Updates about Greg

Rejection over!

2012-01-10T16:08:00.001-05:00

We just found out that Greg's biopsy was a 1, which means that he's not rejecting anymore! The lab technician even took the time to write on the report that he looks "soo much better than last time"! Woohoo!! We are so thrilled and thankful!

He'll be on an increased dose of diuretics to help control his blood pressure and reduce some of the fluid he has on him right now, and then he'll be going back in 6 weeks for another biopsy. Since the last round of steroids worked he won't need to be on any long-term dose of steroids and they don't have to change his treatment plan.

Thank you for your prayers! And thank God for healing his heart!!

Good news

2012-01-03T15:48:00.001-05:00

We haven't heard from the transplant coordinator this week, so we're assuming that what she said is true: no news is good news. Which probably means that the rest of the blood tests came back with normal results, and that the scare over Greg's liver was caused by the steroids he was given and not some sort of liver damage or failure. We are VERY glad about this and so thankful to all of you who have been praying that his liver would be fine.

He's been feeling a little better and stronger each day since Saturday. We've done some walking outside and he's needed to stop less often for breaks, so his stamina is improving! Hopefully this is a good sign that he's not still having rejection and that the swelling of his heart from the rejection is going away. He has another biopsy on Monday, so by some time on Tuesday we should have the results. I'll let you know what we find out.

Thank you for your prayers!
Elise

Good news about Greg's liver

2011-12-30T18:52:00.001-05:00

You may have already heard that we had to leave the Radiate conference in Baltimore yesterday due to blood test results that indicated significant damage to Greg's liver. The transplant team wanted Greg to come back immediately so that he could have an ultrasound on his liver this morning and a series of follow-up blood tests to determine what was going on.

So far, we have good news! The ultrasound of his liver was completely normal! Additionally, one of the concerning blood test results was back to normal and the other was significantly improved. We are still waiting to hear the results from the rest of the test (we won't hear until Monday unless there is an emergency) but Greg's transplant coordinator was very relieved at the results so far and thinks that the problem may be reversing itself. It's likely that the steroid treatment he had in the hospital sent his body in to a sort of "shock" that caused his liver to release a bunch of enzymes indicating damage - and that the further he gets from the treatment, the better his liver will be. The other possible causes will hopefully be ruled out as they get the blood test results back.

This is a huge answer to prayer and such a relief - some pretty scary possibilities were running through our minds! Thank you so much to everyone who has been praying for us these past two days.

Greg is still not feeling well - and he actually slept most of today because he is just completely exhausted. His coordinator said that extreme fatigue is one of the side effects of the IV drug he had in the hospital, and that being on so many steroids in such a short period of time would leave him feeling really poorly for a while. She is concerned about his shortness of breath though, because that would not be explained by the steroids.

His next biopsy to check for rejection is January 9th. Hopefully we'll have some great news that his liver is completely fine by Monday!

Thanks,
Elise

Going home today!

2011-12-24T10:29:00.001-05:00

Merry Christmas Eve!

Greg is going home today! He's receiving his last dose of steroids right now so hopefully he'll be home early this afternoon! He's feeling pretty awful, but glad to be getting out of the hospital. We won't know if this treatment was effective until his biopsy in 2 weeks. We're praying that it is! If not, he'll come back to the hospital for another round of treatments.

The great news is that we'll still be able to go to the conference in Baltimore! He's probably not going to be feeling very well (it'll take some time for the swelling of his heart to go down) but he's looking forward to being there with our students.

Thanks for all of your prayers this week! Merry (early) Christmas!
Elise

Still Rejecting

2011-12-22T14:59:00.001-05:00

The hospital just called with the results of the biopsy - as you can tell from the title of this post Greg's still rejecting. He's now at a 2R which is actually a higher level of rejection than before. It seems like the oral anti-rejection drugs didn't do anything to help.

He's getting a shower and then we're heading in to the hospital. He'll be on IV anti-rejection drugs for 3 days and we'll either get home late Christmas Eve or sometime Christmas day.

We're pretty disappointed. Thankfully, Greg's parents and 2 brothers will be able to come to visit us tomorrow through the 26th so we'll have some good company while at the hospital. I'm not sure what to expect as far as how the drugs will make him feel or if we'll have much information to share over the next few days, but I'll try to send out updates if there's anything to share.

Please pray that the drugs will be effective and that Greg's body will respond quickly to them.

Thanks so much,
Elise

Good news/ Bad news

2011-12-21T12:33:00.001-05:00

Greg's biopsy was early this morning and while we don't have the results yet, we did gain some information from the doctors.

Good news first: Greg's heart is begining to innervate, which means that nerves from his body are growing into his new heart. This process will take a couple more years to complete but the doctors were excited to see that it's already begun! It's a really good sign that it started so soon. When it's complete, his heart rate will be controlled by his nervous system again instead of by hormones (such as adrenaline) and the heart's internal "pacemaker". The downside to this happening so soon is that the doctors accidentally hit a nerve during the biopsy which made Greg really dizzy (he's awake during the biopsies), prolonged his procedure, and left him feeling pretty awful afterward.

Now for the bad news: Greg's heart pressures were too high during the biopsy. Essentially this means one of two things: either he's still rejecting, or he's done rejecting but his heart is still recovering from the rejection episode (which would have swollen it, increasing the pressures). This is consistent with how he's been feeling - short of breath and fatigued. We'll hopefully get the results of the biopsy tomorrow afternoon and then the doctors will take into consideration the pressures from today when they make a treatment plan. We're hopeful that he's done rejecting and he won't be admitted to the hospital, but it seems less likely at this point.

Would you please pray with us? This isn't an emergency situation by any means, but it's looking like Greg there are some more steps to take to get Greg through this rejection episode. Thanks so much!

Elise

Rejection Update

2011-12-15T18:02:00.001-05:00

Thank you so much for all of your prayers and encouragement in light of Greg's recent rejection. We've been very blessed by all the support we've received!

This has been an interesting week for us. Greg finished his prednisone treatment yesterday but is still feeling the effects of it. The high doses gave him a lot of side effects and he's extremely worn out and feels pretty awful. However, he was able to participate in most of our ministry activities this week which was a blessing!

Yesterday we met with one of the heart transplant program doctors to discuss the results of Greg's 1 year anniversary tests. For the most part everything looks really good! There are some changes that Greg will be making to address the tests that had less desirable results, and we learned about some measurements Greg can take daily to help watch for signs of rejection in the future. All in all, the appointment was really positive and even with Greg's current rejection status the doctors are please with how he's doing. They reminded us again that everyone experiences rejection at some point and the important things is that we caught it early before damage to his heart could begin.

Greg will have a biopsy next Wednesday to determine if his body is still rejecting his heart. If everything is back to normal (from the prednisone treatments) they won't make any changes to his medications or biopsy schedule and we'll be able to visit his family for Christmas and attend the Radiate conference that he's teaching at! If he's still a level 2 or has increased to a level 3 rejection, he will spend 3 days receiving IV treatments and then will have a biopsy a week later to see if anything has improved. The great news is that the doctors will likely allow him to go to Radiate to teach (maybe just overnight depending on how he's doing) even if he's still rejecting since it's only an hour away and so close to Johns Hopkins (which has a transplant center)! This is a huge answer to prayer!!

On Saturday I will be traveling to see my grandma and Greg's dad (and possibly one of his brothers) will be coming to see Greg. I'll come back on Tuesday in time to get some sleep and go with Greg to his biopsy Monday morning. All of the details have worked out really well and it is so clear to me that God is directing everything related to this situation and answering many of our prayers.

I'll let you know when we find out the results of Greg's next biopsy. Thank you so much for your continued prayers!

Love,
Elise

Rejection

2011-12-09T14:06:00.001-05:00

We just found out that Greg's biopsy showed that he's having a level 2 rejection. Thankfully it was caught early enough that he doesn't have to be admitted to the hospital right away. Starting today he'll be on heavy doses of prednisone for 5 days and then they will repeat the biopsy on the 21st to see if things have improved. If not he will be admitted to the hospital for more intense treatment.

We feel a mix of emotions - the biggest one being surprise. Although in hindsight he was starting to have shortness of breath like he used to before he had his new heart and was dealing with massive heart failure.

Unfortunately the timing of this is really disruptive to our plans for the holidays. We were going to be in Pittsburgh with his family and I was going to fly to Illinois to see my grandmother during that time - now we're trying to figure out how I can still see her but be back in time to be with Greg for his biopsy. Another complication is that he is speaking at the Radiate conference in Baltimore from the 27th-1st but now might not be able to go.

Please pray that the prednisone would quickly stop the rejection, that his biopsy on the 21st would come back with 0 rejection, and that Greg will be able to speak at the conference. We're feeling pretty overwhelmed with all of this - scared, angry, sad... a whole bunch of emotions are flooding in. Please also pray that we'll be able to fix our minds on the truth that God is in control, that this is all a part of his plan, and that we can rest in Him instead of feeling panic.

Thanks so much,
Elise

ONE YEAR ANNIVERSARY!!!

2011-11-25T17:27:00.001-05:00

Today is Greg's One Year Anniversary with his new heart!! Hooray!!! We are so thankful to have made it to such an important landmark! And we are grateful for every one of you who has supported us this year (and many prior years) through prayers, cards, encouragement, hugs, financial help, supporting our families, etc. We certainly have not been on this journey alone, and I don't think we would've made it if we were. You have been a beautiful picture to us of the body of Christ - your kindness toward us has been his "hands and feet" in so many ways.

The month leading up to today has been difficult for us. We both (but Greg most of all) have been dealing with flashbacks of horrible things that happened in the months leading up to the transplant and right after. It's odd how memories can pop up when you least expect them. There were things that I just pushed to the back of my mind once Greg's new heart came because we were just SO overwhelmed by gratitude - and then fear when his condition worsened - and then we were just focused on getting him home and his recovery - and then on returning to ministry. But a lot of experiences that I'd pushed back have been coming back to me and now I'm realizing that I have a lot more to process.

So for a lot of reasons we've felt some dread of today - and some guilt for feeling that dread. It is a day of celebration for sure, but also a reminder of some very hard things. I pray that over the years November 25th becomes more and more associated with the gift of life and not the close call with death.

How are we doing, one year out? Well, it's a mix for sure. There are so many wonderful things to celebrate: we are back in full-time ministry, working with students and staff that we love; we have made new memories and spent holidays with family; Greg's heart is very healthy and he still hasn't experienced any rejection; we are able to have fun again, and to enjoy people and hobbies instead of being completely focused on health 100% of the time; Greg has not been readmitted to the hospital since his transplant; God has provided financially through many people not only for the transplant but also our other needs; we've seen God answer so many prayers, etc. And then there are some tough things: this experience has changed us deeply and we struggle to hope that we can experience good things in this life; we have lived through some horrible things that affect us daily; we are still not sure how to move forward from this experience; neither of us feels back to "normal" yet- but we're also wondering if there is a "normal" or if we have to make a new "normal"; we're living under the shadow of "life expectancy" and not sure how to do that yet unable to ignore it, etc. We have good days and bad days, much like anyone else, but our bad feels exacerbated by this experience.

I'm not sure what to write now that I've shared how we're doing - but I'd love to ask you to keep praying for us.

Most of all, I want to say that Jesus Christ is the only reason we have not been utterly crushed by this experience. If you've seen any good qualities is either of us through this whole experience, it is only by the grace of God. Apart from him we are weak, fickle, hopeless, scared, and completely unable to face tragedy. Yet somehow he gives us what he promised, grace to get through each day - sometimes moment by moment. I really hope that our story of Greg coming so close to death points you to the only One who ever overcame death. He alone is the reason we are able to get out of bed each day. And we cannot wait to be with him forever.

"Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, "Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." Revelation 21:1-4

Still No Rejection

2011-10-30T10:35:00.001-04:00

Hi everyone!

Greg had a biopsy last week and the results showed that he still has not had any rejection of his new heart!!! We are completely blown away by this. The doctors and nurses told us over and over again that we should expect rejection because everyone has it at some point, especially during the first year. And now we are 1 month away from Greg's 1 year anniversary of his new heart and he still has not had any rejection! God is so good!

Next month he will have many different tests done - x-rays, echocardiograms, another biopsy, etc. so that the doctors can have a more in depth understanding of how his heart is doing after 1 whole year. And I am so pleased to say that we have no reason to believe that they will turn up anything that is not going well!

If everything checks out well next month, Greg won't have to have a biopsy for 3 months! They'll continue stretch out the length of time between biopsies and eventually he'll just get them once per year.

Thank you to everyone who has been praying that Greg would be protected from getting sick now that it's flu season. Although I've been dealing with lots of congestion and such off and on, God has clearly been protecting Greg because he hasn't had anything worse than an occasional sore throat!

Love,
Elise

Quick Update

2011-09-09T22:30:00.001-04:00

Hey everyone!

We are very busy with the start of the fall semester at GMU but wanted to stop in and let you know that Greg continues to do well. He recently had another heart biopsy which showed that he still hasn't had any rejection!!! It's really incredible for him to have gone over 9 months with his new heart without facing rejection and we are so grateful! We are both back doing ministry full-time and feel incredibly blessed to be back doing what we love. Greg spoke at our weekly Cru meeting last night. The last time he spoke was a little more than a year ago - shortly before he went into the hospital for 3 months. It's hard to believe that our future looks so hopeful now and looked so bleak then. We are so thankful for all that the Lord has done for us! And we are so incredibly grateful for your love, prayers, and support.

Thank you!
Elise

Post from Greg - Job 1:21b

2011-08-02T14:34:00.001-04:00

Its been a wonderful and horrible 90 minutes.

An hour and a half ago I met a man in the cardiac rehab clinic who goes by the nickname "Lucky" - he's survived the Vietnam War (where he was wounded and received a prosthetic leg), two heart attacks, and was one office wall away from being incinerated when the plane hit the Pentagon on September 11th, 2001.

Ten minutes after that I met a middle school girls who has an LVAD and two other mechanized apparatuses wired and tubed into her body keeping her alive - all the machinery requires a two-sided backpack and a belt to carry around.

An hour after that, I ran into an old friend, Cindy, who is a middle-aged woman waiting for a heart. When Elise and I started going to the transplant support group, everyone shunned us because we were so much younger than anyone else in the program at that time. Maybe its not fair to say they shunned us, but they certainly didn't know what to make of us, and therefore ignored us. Cindy and her husband, Dave, were the only ones who reached out to us. Every time we saw them in support group or clinic, they would encourage us, pray for us, and ask us how we were doing - despite Cindy's own situation and obvious suffering. If you've never spent time with someone on a VAD, it would be hard to imagine what I'm talking about.

I was headed to the elevator in the parking garage when out popped Cindy, all smiles and hugs. She told me she'd actually been looking around the hospital for me for months - the last time we saw each other was at a support group where Elise and I were told that if we had children, I wouldn't be able to hold them or snuggle with them. Cindy spent a great deal of time looking for me to tell me what she finally vocalized this morning - "You and Elise can have babies, Greg - just don't take them to daycare. Don't take them to daycare, and you'll be just fine!"

She asked me if I had gotten a heart, and when I told her that I did this past Thanksgiving she literally squealed and jumped for joy. Such effort for someone on a VAD is almost impossible, and yet here she was clapping and hugging me and congratulating me, as if I had somehow accomplished something. She's an incredibly sweet woman, and has always cared deeply about the outlook on mine and Elise's life.

I asked her how she was doing. She told me she had just left Dr. Desai's office, and that he had sorrowfully informed her that her body has become too dependent on the VAD she has lived with for 5 years, that her antibodies where too screwed up, too depleted. Her prognosis and treatment have been altered accordingly - she will never be offered a heart, and she has at most 5 years to live.

I have no idea what to say. She hadn't even told her husband yet - she still might not have, depending on how long her drive home is. It was only then that I recognized the haunted glint in her eyes that she was trying to mask with a big false smile. I know the look, because I gave to many of you leading up to my surgery - its the look I had when I was convinced I was about to die.

She started crying, and after a wordless embrace I let her go - she needed to be with her loved ones more than anything, and alone if that wasn't possible. I remember.

On the way home, I passed a house where a pile of garbage out front was on fire. Apparently it had spontaneously combusted in this heat, and had spread to the landscaping. I stopped to warn the people in the house, and it turns out they had no idea that the fire had started and was spreading. They were able to use a garden hose to put out the blaze. We couldn't even really communicate - there was a language barrier.

Its two o'clock now. This email started with events 90 minutes ago. And I don't know what to think and feel - I'm still in shock over Cindy. I don't even know why I'm writing this, except that I felt God calling me to write it down and share two verses with you. The first is Job 1:21b - "The Lord gave, and the Lord has taken away - blessed be the name of the Lord". And the second is Acts 17:28a - "In Him (Jesus) we live and move and have our being".

Driving home in the silence of the car today after seeing Cindy, I was struck by how small and petty many of the things we worry about in this life are. The truth is that we are incalculably blessed with the very gift of life itself. Our lives may be filled with trials, or difficulties, or things that leave us feeling exhausted and depleted. But we are alive. We have eyes to see the sun. Lungs that fill with oxygen. The opportunity to love people and be happy in their company. The ability to ascertain that their are greater things in than world than ourselves - that a true God exists, and we have the ability to know Him. To be known by Him. To breathe Him.

Many of you have probably heard of read Dylan Thomas' famous poem in which, regarding death, he advises his readers "Do not go gentle into that good night / Rage, rage against the dieing of the light". But for those found in Christ Jesus, we are ushered into this world in peace, and drift out of it in peace. In thinking about Cindy on the drive home, I put on a song called "Sweet Afton" by Nickel Creek. I felt it reflected Cindy well - in her there is no raging against the storm this life can be. Rather, it seems to me that Cindy regards life like the stream in the song - "Flow gently, sweet river."

God is sovereign over all of our lives, down to the tiniest detail. There is peace to be had in that fact, if peace is indeed what we search for when visiting it.

Results

2011-08-01T17:12:00.001-04:00

Hey everyone,

We got some good news at the clinic! Greg had a blood test to check for rejection (the Allomap test I've explained in previous posts) and it showed that he still hasn't had any rejection! Praise God! The really awesome part is that he is now completely off of Prednisone. Most transplant recipients never come completely off of it so this is really encouraging. And with all the bad side-effects that steroids can have on one's body over time it's a really great thing.

They did end up putting Greg on a low daily dose of diuretic because they think he is retaining some water. We're not sure why that would be the case but the doctors want to see how he does on the daily dose for a while before taking any other steps. For now we're just glad that they are addressing the problem and Greg's enjoying the benefit of having less excess water on him.

Thanks for praying for us!

Love,
Elise

A long overdue update

2011-07-22T18:08:00.001-04:00

Hi everyone,

I have been meaning to write an update for weeks now but to be honest I've enjoyed the "normal" feeling of not writing updates. In so many ways life feels more normal for us than it has in a very long time - we are both back doing ministry with students (including leading a Mason Cru summer Bible study which we love), we visited our families in Pennsylvania, and we even have been able to spend some time relaxing with dear friends. They are all such normal things and yet it had been such a long time since we'd been able to enjoy them! We also celebrated our 4th Anniversary on June 24th and we had a lot to celebrate! Just being able to be together for another anniversary is a miracle and we are so thankful to God for giving Greg a new heart.

Being busy with ministry and not finding the time to sit down to write a blog post has felt great - yet we appreciate your prayers and support so much and we do want to keep you more up to date on how Greg is doing than we have recently.

Overall Greg has been doing really well! Greg's last heart biopsy came back as a zero on the rejection scale - he's gone almost 8 months without any rejection! Praise God! Today was his best "performance" at rehab yet - he spent nearly 40 minutes on cardio machines- but there are still ups and downs. In fact Tuesday's rehab was his worst "performance" yet in rehab - only being able to spend around 15 minutes on cardio. He only has a few more sessions of cardiac rehab left and then he'll be transitioning to keeping up the same exercise routine on his own at home. Thankfully our apartment complex has a small workout facility with most of the machines he's accustomed to and some light weights. We plan to do the workouts together 3x a week so that he's not alone during them.

Greg has had some issues with medication side effects recently. A new medication that the doctors added (a blood pressure medication that they've found protects transplanted hearts from pre-mature arterial disease - which is a common problem) was making him extremely fatigued, causing a lot of back and shoulder pain, and giving him headaches. Thankfully he was able to stop the medication and has had some relief from the symptoms. He's still feeling very worn out though and has decided to scale back on his non-rehab activities for a while in order to give his body some much needed rest. In fact he's asleep right now as I type this which is very atypical for him these days.

Another issue is that he seems to be putting on a lot of extra fluid again. It has been a very frustrating process because the rehab facility and the transplant doctors are not in agreement about what desis causing the weight-gain. Throughout Greg's transplant journey doctors have misdiagnosed his fluid retention as regular weight gain due to the fact that Greg tends to retain water around his organs instead of in his ankles and feet like most doctors assume. We've had some pretty bad experiences with this misdiagnosis in the past so its been tough emotionally feeling like its happening again. Thankfully, Greg was allowed to take one diuretic pill early this week and he dropped 7lbs so it seems pretty clear that there is some water retention happening. Greg has an appointment at the clinic on Monday and we plan on discussing this at length with the doctor and coordinator. There is a possibility that they will be running some more extensive tests to look for fluid in places less obvious than his ankles - which we're really hoping they will do. We'd appreciate your prayers that they would be willing to look into the problem more carefully and that they'd find out what is causing the weight gain and not just make some guesses based on what they think "should" be happening.

I think that about sums up what's been going on lately. I will try to do a better job keeping you up to date as we (hopefully) get some results!

Love,
Elise

Rehab is going well!

2011-05-12T11:29:00.000-04:00

Hi everyone!

Greg is in his third week of cardiac rehab and it's going very well. It's challenging but they are very cautious and have started him out slowly. Eventually, as he gets stronger and more accustomed to his heart, they hope to have him do 45 of cardio (on the treadmill and stationary bike) followed by some light weight training and stretching. That's a long way from where he's at now, but it's exciting to see him making progress each session and feeling good. He's also supposed to exercise on the days he isn't at rehab (he goes on Monday, Tuesday, and Friday) so we've been going on long walks outside on his off days.

On his way to rehab he visited the 3rd floor nurses that took care of him during the months before his transplant and for a week afterward, and they were so excited to see him. They said he was looking really good for being almost 6 months out.

Last week he had another biopsy and it came back with a level 1 rejection, so they didn't need to adjust any of his medications! The best part is that next month he will be able to do the blood test (called Allomap) that checks for rejection instead of going through another biopsy! He also had an echocardiogram, EKG, and chest x-ray last week, and everything came back looking great. His heart is doing really, really well, praise God! While I was in the waiting room during these tests, many different nurses and staff people that know Greg told me that he looks so much better than they've ever seen him - they were so encouraged at the improvement and we were too! It's comforting to hear the people who know what to expect post-transplant say that he's doing well and he's right on schedule with his recovery.

He still has some good days and bad days - and there've been bumps along the road these past few weeks, but all in all he is doing so well and we are so thankful! Thank you for all of your prayers and encouragement - they help a lot, especially on the bad days.

Love,
Elise

First day of Cardiac Rehab - please pray

2011-04-27T07:31:00.001-04:00

Hi everyone!

Today is Greg's first day of cardiac rehab! It's an exciting benchmark but it's also pretty intimidating for Greg and we'd really appreciate your prayers for him today. We'll be there from 2- 5:30pm - getting a tour, and learning about the plan they have for his rehab. After today's initial session he will be going to rehab three times each week for twelve weeks. Not only will they be working on his strength and getting him used to the way his new heart works, they'll also be helping him work through fears he has of getting his heart rate up. For years he wasn't allowed to or able to exercise because of the risk of having a cardiac arrest, so this is a big change and will take some time to get used to.

The last few weeks have been a roller coaster for us. Greg went off of four of his medications (sleep aids and pain pills) that he's been on for a long time. After he stopped them, his body went through withdrawl which made him really sick and almost landed him in the ER twice. He's still dealing with some lingering withdrawl symptoms but he's feeling much better than he initially did. The exciting part is that he's thinking much clearer and has a lot more energy now that he's off the medications! It's almost like he was in a fog mentally for a long time (his psychiatrist thinks he was being over-medicated) and he's coming out of it! The difficult part is that the sleep aids had some anti-depressant functions and he's having a tough time emotionally - really having to constantly fight to not slip into depression. Last week he saw his therapist for the first time since the transplant and he'll be seeing him weekly from now on, so that has really helped him with the difficult transition off the medications. Would you pray for this? The sudden medication changes have left him emotionally fragile, and we are so reliant on the Lord to give him strength and hope.

Love,
Elise

IT'S GREG'S BIRTHDAY!!

2011-04-12T13:24:00.001-04:00

Hey Everyone!

Today is a really special day - Greg's 26th Birthday! We are so thankful that he is here and able to celebrate - there were many times that we didn't think he'd be alive today! The past for years have been filled with miraculous events that brought Greg to today - we are so blessed.

Thank you for all of your prayers, encouragement, support, and love - Jesus has used you in ways you can't imagine to keep Greg (and me!) going through dark times.

Love,
Elise

P.S. Quick update - Greg is doing well! His Prograf level has been fairly steady so far though we are waiting to hear results from this morning's blood test. He seems to be recuperating well from the difficulties of the last month and is regaining his strength and stamina. Hopefully cardiac rehab will begin next week!

Fantastic News

2011-04-05T11:32:00.001-04:00

Hey Everyone,

Things keep getting better for Greg! He had another biopsy yesterday morning and it came back as a level 1 rejection!!! We are thrilled to hear this because we were a bit nervous with all the medication changes and problems he had this month. With the level 1 rejection he doesn't need any treatment and they are reducing his prednisone dose again, which is always a good thing!

He's continued to feel better and better since the weekend. He's still sleeping a lot, but it's more like 10 or 12 hours instead of 17-19 hours. And when he's awake he's much more alert and has better stamina - able to go up the stairs to our apartment without needing to take breaks. It seems like the incredibly high amount of Prograf in his blood was the culprit that was making him so horribly sick, weak, and exhausted. They've continued to decrease his Prograf because it was still a little too high in his blood work from yesterday - and they'll recheck it next Tuesday.

On Thursday he has an appointment with an Ear/Nose/Throat doctor to follow-up on the dizziness and ringing in his ears. The next goal is for him to start cardiac rehab (it was put on hold due to the Prograf issues but in a week or so his stamina should have improved enough for him to get started).

We are so grateful that the Lord brought us through this bump in the road! Thank you for being there for us throughout it!

Love,
Elise

Prograf Level Update

2011-04-01T14:14:00.001-04:00

Greg's coordinator just called to say that his Prograf level dropped from 36 (Wednesday morning) to 14 this morning! No wonder he was more alert yesterday! It's still too high but just slightly - they want it between 10-12. So he'll continue to hold off on taking Prograf until Saturday evening, at which point he'll start on a lower dose than he was previously taking. They will test his blood again Monday and make any necessary adjustments.

Thankfully Greg has a young, healthy, undamaged liver so his body was able to get rid of the excess Prograf quickly! He's wiped out today and has slept the whole day so far except for going in for the blood test, but I'm interested to see how he's feeling once he wakes up. We'll let you know how things go Monday. Hopefully things will continue to calm down and he'll keep doing better and better!

Love,
Elise

Getting Better =)

2011-03-31T22:03:00.001-04:00

Hey Everyone,
Good news tonight! Today was a much better day for Greg! He's been awake since 3pm and still has some energy left which is incredible - and he's in a lot less pain and hasn't had a headache! It is amazing the change that's taken place in 24 hrs. It definitely seems like the doctors were right about the Prograf level being a big player in him feeling so awful. Tomorrow morning he gets a blood test so they can check the level and determine what to do with his Prograf over the weekend. Then they'll check it again on Monday when he goes in for the biopsy. If his WBCs are too low tomorrow they are going to wait on the shot to give him a break from all these side effects - in that case they'll just give him the shot Monday as well.
Thank you so much for praying for Greg. It's so good to be able to write you with good news again!
Have a great night,
Elise

Possible explanation

2011-03-31T00:18:00.001-04:00

Hey Everyone,

Greg's blood test this morning showed that the level of Prograf in his blood is more than 3 times the desired level. The doctors think that this may explain a lot of his symptoms. After a thorough examination they concluded that he isn't showing signs of any of the serious issues that people can develop, but he is possibly showing some other complications (more testing/examination needs to take place before anything is definitely diagnosed).For now their top priority is waiting for his liver to metabolize the excess Prograf in his blood and then see if any of the symptoms go away once he has an appropriate amount of Prograf. He won't take any Prograf (which he takes 2x/day) until after his blood test Friday morning at which point they'll decide the next course of action regarding Prograf. Despite all of this, his heart seems to be working really, really well! Thank God! It's so crazy that his transplanted heart is thriving, but everything they do to keep it that way is really taking a toll on the rest of Greg's body.

I asked how it was possible for him to suddenly have such a high amount of Prograf in his blood all of a sudden when they didn't change the dose. They explained that as they have changed the other medication's doses (trying to increase WBC production), it has changed the way the drugs are interacting with Prograf, thus changing the rate at which it is metabolized. Also the increased pain medication Greg's needed, especially these past two weeks, can really slow down the way the liver processes Prograf. So, there is a sensible explanation. As they keep saying over and over: it's all a balancing act.

Now it's a matter of getting Greg through to Friday. He is in terrible pain and barely able to stay awake for more than a couple hours at a time. It's very frustrating for him. Would you please pray for him these next two days? Also please pray for me as I try to help Greg through this really hard time.

On Monday morning he will have a biopsy to check for rejection. We are really glad this is happening because all of the decreases in his medication have had us worried that he's developing rejection. Thankfully, rejection is treatable even though it is scary to think about.

In all of these crazy details, we are relying on God's total control over all of them. If you pray for us, please also pray that we would rely on Him more and more for the strength, peace, and healing that we need.

Thanks so much,
Elise

Update

2011-03-29T10:07:00.001-04:00

We just heard from Greg's coordinator. She said that his Prograf (a transplant medication) level was very high when they tested it in the ER. It wasn't tested at the right time (typically they test it before he has his first Prograf dose of the day) but she's wondering if it would show up as too high when tested at the right time. If so, this could explain a lot of the pain he's feeling. We'll be going in first thing tomorrow morning for them to get a more accurate Prograf number. The other issue she is concerned about is how dehydrated he was in the ER. Our goal for today is to keep him well hydrated as we wait for more results tomorrow.

If the issue is just the Prograf and dehydration it will be easily fixed, which we are very thankful for! I'll keep you updated when we get more information.

Thanks for praying!
Elise

Please pray

2011-03-29T09:52:00.000-04:00

Hi Everyone,

We just spoke briefly with Greg and he (and Elise) have just gone through a tough couple of days. He began getting severe migraines (complete with nausea and vomiting) about 48 hours ago. It sounds like he has had 3-4 since Saturday night. Along with that, the pain that he is experiencing in his bones and muscles has continued to get much worse. They called the transplant center "on call" coordinator yesterday and were instructed to go to the ER immediately where it sounds like they spent most of the day. They did a TON of lab work, XRAYS and and CT scan of his brain and nothing definitive showed up. They did say that his WBC count was "better" - though no definite level was given. Dr. Desai gave instructions that he was to be discharged, but that they were to call first thing this morning to set up a time to be seen in the transplant clinic. They made calls requesting to be seen, but never got an answer back, which is extremely unusual for that clinic... and very disturbing when you're feeling so awful. Greg said that it's just frustrating because since he's not running a fever, it seems like no one is really alarmed, but he feels worse and worse every single day. In addition to all the pain, he is extremely fatigued - sleeping as much as 15 hours per day. There are SO many unanswered questions going through their minds (and ours) right now and it would just be a real blessing to have some clarity about what's going on - be reassured that nothing major is wrong - and oh so importantly allow him to have relief of this pain.

If you would please pray for those things and for protection over his new heart- that no rejection would be occurring! - we would be so very grateful. Also please pray for peace for Greg and Elise - that fear would be kept away and they would feel the Lord's presence. Thanks for always interceding on their behalf - we are all so blessed by your presence in our lives.

I hope and pray that you and those you love are well -- again thank you.

Love,

Becky

No WBC Improvement

2011-03-21T18:54:00.000-04:00

Greg had another blood test today and it showed that there was no improvement in his WBCs despite the changes that were made in his medications and the most recent injection. He'll be going back tomorrow to get another injection, and then it'll be back for more blood work a day or so after. In hopes that something will change, the transplant team has instructed Greg to take no Cellcept tonight. This is in addition to no Valcyte - so they are leaving him with very little defense against rejection. We don't feel like we really understand all the adjustments that they are making, but we're both worried that all of these medication decreases are going to end up in rejection at his next biopsy (we don't have an appointment yet but it should be some tie next week). Greg specifically asked me to ask you to pray that his heart would be protected against rejection. If the rejection was significant he'd probably have to be in the hospital for a few days and he's so tired of going to the hospital that it would be even more of a discouragement. Would you also pray for his WBCs to improve? That his body would respond to the shots and just make a whole ton of them? We know that God is in control of all these details and when medicine doesn't work like it should it reminds us that He's the one we need to be relying on.

While he's still feeling incredible bone-soreness, his energy level has significantly improved since early last week which we are very grateful for! Tomorrow's injection could bring that back but we are praying that it won't.

Thank you for continuing to pray for us!
Elise

Slight WBC Improvement

2011-03-17T10:18:00.001-04:00

Hi everyone!

Yesterday Greg returned to the hospital for another injection to help improve his white blood cell count. There has been a slight improvement since the doctors decreased Cellcept (one of his transplant meds) but it wasn't the improvement they were hoping for. At this point decreasing the Cellcept even more is not a viable option because it would put Greg at too great a risk for rejection.

Since something needs to be done, the doctors decided to try eliminating Valcyte - one of his other medications. Valcyte protects Greg against CMV - a virus that 80% of the population (at least where we live) has been exposed to. Like chickenpox/shingles, CMV is a virus that stays in your body once you have it and when you become immunosuppressed the symptoms can pop back up. For most people CMV causes flu like symptoms, but for Greg and other immunosuppressed individuals, it can be far worse. Interestingly, Greg is part of the 20% of the population that has not had CMV, but his donor was part of the 80% that had CMV. So Greg never had CMV, but his heart did! How odd! Typically in cases like this, the transplant recipient would remain on Valcyte for 6 months. However, having such low WBCs leaves Greg susceptible to a whole host of infections, so they've decided to stop the Valcyte (at approx. 3 1/2 months) because Valcyte can decrease WBC production.

Greg will continue getting weekly blood tests to check his WBC count and to see if he is developing CMV. If he develops a low-grade temperature and abdominal discomfort we are supposed to call immediately because that might indicate CMV. The hope is that they'll be able to catch it early enough and knock it out by putting him back on Valcyte if he doesn't start to develop CMV. But the real hope is that his WBCs improve and he doesn't develop CMV at all! In the meantime he needs to be extra-cautious to not be around anyone who is sick and to wash his hands frequently, etc.

Greg is really glad that there will be less injections because they have caused incredible soreness - aches in his bones - and lots of fatigue. He slept 18 hours straight on Sunday and most of the day Monday and Tuesday as well! This is typical for someone receiving the injections - which is part of the reason they want to try stopping the Valcyte.

Would you please pray for Greg? That God would protect him from CMV and that his WBCs would improve? He ended up at the hospital 4 times last week and twice this week already and is feeling really discouraged by that - I know he would really appreciate your prayers in that area as well. I've also been feeling pretty down this week. Please pray that this verse would be true of me, "You keep him in perfect peace whose mind is stayed on You, because he trusts in You" (Isaiah 26:3) - it's easy to feel despair looking at all that is happening in the world, but if I focus on Christ and who he is and what he's doing, he promises peace. What an amazing promise!

Thank you for your prayers,
Elise

WBCs still too low

2011-03-10T19:49:00.001-05:00

Just a quick update:

Greg had his blood test today to see if decreasing his medication would help him produce more white blood cells (WBCs). Unfortunately it didn't work, so he'll be going to the hospital tomorrow and either Monday or Tuesday for injections to hopefully stimulate his WBC production. We still don't know what would happen if that doesn't work - we're just taking it one day and one blood test at a time.

Hopefully you'll hear back from me with some good WBC news early next week!
Elise

Biopsy result and some answers

2011-03-08T15:06:00.001-05:00

Hi Everyone!

It's been a while since I last wrote an update, so I have a lot to catch you up on!

This past month has been pretty tough for Greg - and a bit discouraging. In many ways he feels like he hit a plateau in his recovery - he seemed to be doing better and better for a while but started to have less energy and stamina. Even walking up the 8 stairs to our apartment became pretty difficult for him, leaving him winded. He also seemed to be getting sick over and over again with the same sore throat, achy muscles, stomach aches and other cold/flu symptoms. But most alarming was the fact that he was experiencing so much dizziness and had actually fallen down 5 times in one week.

On Feb. 28th he had a cardiopulmonary stress test and was also able to talk at length to Dr. Desai about how he's been feeling. Dr. Desai was pleased with how the stress test went - and though there is no "good" or "bad" result (they are just finding a base-line to use for his cardiac rehab) it was exciting to see the difference in how he did this year vs. almost exactly 1 year ago (which happened to be the day that Dr. Desai first mentioned the ARVD diagnosis and suggested we go to Johns Hopkins - a significant day for sure!). Dr. Desai suggested that Greg see an ear/nose/throat specialist because the dizziness issue sounded like a problem with his inner ear. Thankfully none of the problems he's experienced are heart-related issues. The first available appointment is April 7th. He also explained that the decreased energy and stamina could be coming from the decreased Prednisone and pain killers. Greg has been on such high doses of both for so long that they have masked how much of a toll the surgery had on his body. Apparently it's common for patients to feel totally wiped out when the Prednisone doses decrease since it is a steroid and gives people extra energy and alertness.

Yesterday, Greg had another biopsy and more blood work. He also had his first Allomap blood test. It's pretty complicated to explain, but transplant doctors are trying to reduce the number of biopsies patients need to have due to the associated risks and pain experienced (Greg doesn't get any pain medication or sedatives during his biopsies - ugh!). They've decreased the number of post-transplant biopsies over the years, but a recent development is the Allomap blood test. It doesn't give a clear yes or no for rejection like a biopsy does, but it gives a % likelihood that the patient is experiencing rejection. If there is a high likelihood of rejection, a biopsy is performed. If there is a low likelihood of rejection, the biopsy is skipped! Yesterday's Allomap test was done to give the doctors a baseline for Greg so that they are better able to interpret his numbers. Hopefully throughout the year he'll have more Allomap's and less biopsies!

His biopsy came back with a level 1 rejection, which means his doses of Prednisone will decrease again! However, his blood tests came back with him having a low white blood cell count. This is probably due to high doses of one of his transplant meds, so they are decreasing the amount Greg takes in hopes that it will restore his WBCs. On Thursday he has to go back to the hospital for another blood test to check to see if there's any improvement in his WBCs. If not, he'll return to the hospital a few hours after the test to get a shot of a medication that should stimulate WBC production. We're unsure what they will do if his WBC count doesn't improve at that point, but we are hopeful that it will.

His low WBC count is likely the cause of why he keeps getting sick over and over again. It's nice to finally have an answer! Greg's transplant coordinator is hoping that his stomach aches will go away in the next few days with the decrease in medication, and that once his WBC count improves, his immune system will be working better and will keep him healthier. As they increase his WBC count there is an increased likelihood that his healthier immune system will try to fight his new heart - so please pray that he doesn't experience rejection.

We are in the process of setting up Greg's first cardiac rehab appointment so that should begin in the next week or two. It's an exciting, but intimidating, step back toward normalcy.

So that's a really long and detailed update, but now you are officially caught up! As Greg faces a lot of new steps in his recovery, we both are grateful for your continued prayers - thank you!

Love,
Elise

Another fantastic biopsy!

2011-02-11T11:39:00.001-05:00

We have a lot to celebrate about since getting the results of Greg's most recent biopsy. He had a rejection level of 1, but it was such a low 1 that it was nearly classified as a 0! The wonderful thing about this is that his prednisone dose is finally below 10 mg/day which is a significant milestone. He has to use a lot of caution (mask on, no crowds, no construction, no sick people...) but he's finally allowed to start venturing outside of our apartment! It's hard to believe that its been nearly 4 months since he's been anywhere aside from our apartment or the hospital. 4 months! And even before he was admitted to the hospital, he wasn't going many places because he was so sick. We are really excited about this big step back to a more normal life for him!

His body is also doing a better job at keeping extra fluid off so his diuretic dose was decreased again, with the goal of him being completely off of it soon. Additionally, he doesn't need to take iron anymore. The doctors think that the iron may be contributing to him feeling so sick some mornings when he takes his medicine, and thankfully the blood tests showed that his hemoglobin is at a safe level again so we can get rid of the iron! If his terrible nausea doesn't go away now that he's off the iron they'll start working to figure out what other meds could possibly be making him sick (there's a lot of them that they can't get rid of that they know have this side effect). I know that Greg would really appreciate your prayers in this area. Some mornings are really really awful for him.

He's still not allowed to drive himself for a few more weeks (until his sternum has fully healed) so we were going to go somewhere today while most people are at work and places are fairly empty. However, he hasn't been feeling well since last night so we'll probably wait another day or so until he has some energy back. The recovery process is a lot like that - he has really good days followed by really bad days (where he's tired, overwhelmed, and in lots of pain, or gets really sick from his meds.) but the bad days are getting fewer and fewer!

Since we've both been feeling a little stir-crazy on his good days, we started some mini home-improvement projects this week (painting some old furniture and such). The amazing thing was watching Greg work up a sweat and get out of breath, with no fear of having a cardiac arrest! He was moving around and doing things that he hasn't been physically able to do for years! It is so wonderful to see him able to do more because of his wonderful new heart. What a blessing! He was absolutely exhausted afterward, but it's going to be so neat watching his stamina increase as he heals more and more.

At the end of the month he has a cardiopulmonary stress test and then he'll begin cardiac rehab, which will be 3x/week for 3 months. The focus of this is to get his body and heart functioning better together (as the heart becomes more innervated) and helping Greg to increase strength and stamina, while getting to know his new heart! It will be very challenging, and is intimidating for Greg to think about right now (he's barely been able to walk up a slight incline without having problems breathing for 2 years) and we'd appreciate your prayers as he prepares for this big step.

So that's our exciting update! Thank you for continuing to pray for us throughout his recovery. We are so grateful for all that God has done this year!

Love,
Elise

Letter from Greg

2011-02-03T20:42:00.001-05:00

One of our ministry partners suggested that we post the prayer letter (we send out a prayer letter each month to the amazing team of people that make our ministry- and life - possible) that Greg wrote recently on our blog. Its the first time Greg has been able to write a letter in quite some time, and I was amazed when he said he felt up to it! The letter focuses on his experience while in the hospital waiting for his new heart - it was encouraging for me to read and I hope it is for you too.

Quick update before the letter: Greg continues to do well! Yesterday was pretty momentous as he took his first walk outside! We walked the length of our parking lot and though he was tired afterward he enjoyed being out in the fresh air! His next biopsy will be a week from yesterday- we'll be sure to let you know the results when we get them.

Here's his letter:

Dear Ministry Team,

This is Greg writing – I survived! I've missed you and talking with you so much, and it's with great joy that I sit here writing my first post-transplant prayer letter! Your prayers have carried me through the "valley of the shadow of death", and God Almighty has given me life again! The joys, the struggles, the adventure – everything that God has laid before me - I'm being given another chance to live it. Life and breath with the ones you love is a sweet, sweet thing, and praise the name of Jesus Christ for His love and mercy and grace towards me! I'm a blessed man.

There's so much I want to catch you up on – and God willing, there will be time and more time to talk about and reflect on the miracle that's happened to me this winter. But for right now, as I was sitting down to write this letter, God put some very specific things on my heart that I'm supposed to share with you. Do you ever get that feeling, where the Holy Spirit is almost nudging you to do or say something? That's how I feel right now, so I want to make sure to use my first new-heart letter to say what He wants me to say. So here we go – please know how much Elise and I love you, and how extremely good it feels to being writing you once again:

All told I spent over two months in the hospital. While I was there, I watched a lot of people die, a lot of families lose someone they loved. It was hard, and sometimes scary. It seemed like every day there was a reminder of how fragile and precious a thing life really is.

I found myself reflecting a lot on one of Jesus' teachings: He said "Are not two sparrows bought and sold for a penny? And yet not one of them will fall to the ground (die) apart from the will of the Father." Jesus finished by saying "So don't be afraid, for you are worth more than many sparrows."

Just like He did in this passage, Jesus frequently employed a teaching device called "lesser to greater" - he would make a point about something small and insignificant, only to turn around and say "Hey, if this is true for something completely unimportant (like a sparrow), how much more so must it be true for bigger, more important, more precious things? (like you and me)".

Jesus used the sparrow passage to teach his disciples that they didn't need to fear when they saw death around them, and the reason they didn't need to fear is because God is the one in control of how long we'll stay in this life and when its time to go. The same goes for all of His creation – never ever has a sparrow or a mouse or a potato bug or even a blade of grass died except for when it was the exact instant that God willed it to die. There's reason and purpose behind everything, even suffering and death.

It became clear that I was supposed to be in the hospital for a reason. Day by day, often in weird ways, I'd make friends with other patients, family members, and nurses. Almost inevitably I would wind up in spiritual conversations with them, even if they weren't Christian (I imagine hospitals are a bit like being a chaplain in the army – you find yourself surrounded by people for whom life has come into focus very, very quickly). There was a huge Muslim family on the floor who lost not only the grandfather and patriarch of the family, but a daughter as well – two separate rooms, one in each of the third-floor units. The only ministry I could do was smile for them and cry with them (there was a huge language barrier), but I like to think that was one of the reasons God had my illness progress when He did.

I got tons of chances to share the Gospel with people as well. Some of my nurses, including Dee and Laura, were very receptive. There was a tech named Anna who had such a tender heart, and she shared her entire spiritual background with me and explained to me why she was afraid of church. I got to talk to her very plainly about the nature of grace and how Jesus' love for her could not be undone. There was the daughter of a dieing Ethiopian man named Lulada who would wander the floors at night when everyone but me and the nurses were asleep. Lulada's entire family was from Ethiopia and members of the Ethiopian Orthodox church – and she was looking for an expression of faith that made more sense to her. We spoke for hours on several occasions, and I got to share the Gospel with her, read the Bible to her, and give her a list of great free resources online that would help her grow in her faith. She even let me pray for her and her family the final night I saw her.

Possibly the most amazing development from my time in the hospital was that my psychiatrist asked me if he could use me as a masterclass for his fellows and students. Any time I wanted, he would bring psychiatrists-to-be to my room, and they would ask things like "What's your worldview?", "How does your faith factor into what you're going through?", and "Would you mind sharing your story with us of how you've come to believe as you do?". I must have shared my entire testimony, conversion story, and the Gospel with at least half a dozen psychiatrists (who are not usually the easiest group to reach, let me tell you.). Since my personal psychiatrist, Dr. Arun Gopal, was in attendance each time, I would vary the content, so that by the end of my stay he had gotten a very complete presentation of Christianity (which was exciting since he comes from a Hindu secularist worldview).

There's more that I can share at length another time - a patient named Helen who all but adopted me and Elise as her grandchildren, a PICC line technician who, despite hating Christianity, spent hours going back and forth with me about the faith (any time he was putting a line in me, I had a captive audience for about an hour)! We're friends now, and joke at each other when I see him around the hospital. The point is that God had a plan – I can see that now.

I guess what I'm trying to say is that even in the blackest times, God is at work in you, and Jesus is still mighty and full of love. I'd also add that even the darkest of times do pass – I was convinced I would die before I made it home, and I was wrong. Hope fled me, but God had other designs. Just like the sparrows, He has a very specific time when he plans to call me Home. Until then, I'm invincible – seriously, think of how many times in the last four years I should have died. I have no right to be alive, except that its not in His plan for me to go yet. And when that time comes, hopefully a long and happy life from now, it'll be the right time. Nobody falls to the ground apart from His will. And I've found that He can be trusted, and that peace can be found in this life, if we look for it in Him.

Both Elise and I love you very, very much.

Greg

Another good biopsy!

2011-01-24T15:12:00.001-05:00

We just heard from the transplant coordinator that Greg's biopsy on Friday came back with a level 1 rejection! We are so glad to have this good news because Greg was pretty sick over the past two weeks. Last Monday we went to the hospital for him to have multiple blood tests and an abdominal x-ray because the doctors were concerned that he may have developed an infection. Thankfully, all the tests came back negative and the doctors determined that he must have been dealing with one of the stomach bugs going around our area. Since he's immunosuppressed, any thing that he catches will make him sicker and keep him sicker longer than it would for most people.

He's feeling much better now though, and he's glad that Friday's biopsy results mean another decrease in the amount of prednisone he takes each day. The trouble he was having with seeing things and confusion at night has completely gone away - a huge answer to prayer! On Thursday we'll go back to the hospital for more blood work and for an echocardiogram and EKG (standard procedures that are done at 8 weeks past transplant).

We'll keep you posted as things develop, but for the most part no news is good news! We're at a point in his recovery where we'll be going to the hospital less and having less tests done, but he's not yet ready to start rehab, so it's mostly a waiting game - waiting on his strength to return and his immune system to build up so that its safe for him to spend time outside of our home (something that he is increasingly eager for!).

Thanks for continuing to pray for us during his recovery!
Love,
Elise

Biopsy result

2011-01-11T17:53:00.001-05:00

Hi everyone,

We got good news on Greg's latest biopsy! He had level 1 rejection which doesn't require any additional treatment and the doctors were able to decrease his prednisone dose again. Thank you for praying for this!

Unfortunately, we've both been feeling pretty crummy and exhausted over the past few days. We think we might've caught some sort of stomach bug (or rather I must've caught it while grocery shopping and passed it to him). We're watching Greg carefully to make sure he doesn't develop a fever and so far so good. On Thursday he has a clinic appointment so they will be able to check him out thoroughly to make sure he doesn't need any treatment. In the meantime we're resting and staying hydrated as best as we can.

Greg will be having a stress test the last week of February, the results of which they'll use to determine if he's ready to begin cardiac rehab. Once he starts he'll have rehab a few times each week for 3 months. The physical therapy he had at home was just to get him to the point where he was able to be safe and independent at home - strengthening his legs so that he could climb stairs and get in and out of chairs on his own. Due to the fact that the nerves still need to grow back from his body to his new heart (which typically begins by 3 months post transplant), the doctors don't want him getting his heart rate elevated from exercise until he learns to work with his new heart in rehab.

In the meantime, the biggest concerns continue to be if he will develop rejection or an infection. The first year, but especially the first three months, is the most dangerous time for rejection. Its awesome that he hasn't had any significant rejection yet, we are praising God for that, but it doesn't necessarily mean he won't have any in the future. Almost every patient develops some rejection - some people have lots and some people only have a small amount. Even if he does have rejection, its not something to panic about. As long as it is treated promptly (and they do the biopsies to catch it early on) it should not damage the heart.

Would you please pray that our stomach-related symptoms would go away and that we'd have some energy? I (Elise) am trying to incorporate some normalcy into our lives again (For example, I went to the dentist today! It sounds silly but it was a big step towards normal life for me.) but feeling sick makes taking care of Greg more tiring and I don't feel like I have anything left over.

Thanks so much for your prayers and encouragement!

Love,
Elise

Progress!

2011-01-07T13:25:00.001-05:00

Hi Everyone!

I'm excited to share with you that as of this week Greg has officially "graduated" from at-home nursing and physical therapy! He reached the goals that they had set for his recovery and did so much sooner than they expected! It is truly amazing to see how much stronger he is now than when he first came home - its like he is a totally different person.

This morning we went to the hospital for another biopsy. We don't know the results yet and won't hear from the doctor until Monday unless there is an emergency issue (such as severe rejection- level 3) that they need to treat immediately. However we would be surprised if that was the case because Greg is doing so well. His incisions have healed very nicely, his swelling is significantly less everywhere, his heart sounds great and his blood pressure and temperature continue to stay within the safe zone. All in all his recovery is going so well. Depending on his blood work and biopsy results they may decrease his steroid doses again which would be wonderful. He is still having the same mental side effects each night from the steroids so another decrease would be really helpful.

One of our favorite nurses, Bernadette, took care of Greg this morning and she couldn't believe how strong he is. It wasn't too long ago that she and 3 other nurses had to help Greg get from the wheelchair into our car - but today he walked right in and out of the hospital on his own power!

I'll let you know when we hear the results from today's hospital visit - but I wanted to share with you the exciting news of Greg's progress!

Happy New Year,
Elise

Biopsy result - low rejection!

2010-12-27T14:50:00.001-05:00

Hi everyone,

Merry Christmas! We hope that you had a wonderful time celebrating Christ's birth with family and friends. As you can imagine, Christmas was even more meaningful for us this year. We never thought that Greg would be home for Christmas this year- there were times when we even wondered if he'd be here at all. But God continues to pour out blessings upon us and Greg was home and feeling good on Christmas! What an incredible gift to be given a second chance at life!

Last Thursday Greg had another biopsy to check for rejection. We were worried that the biopsy would show level 2 or 3 rejection because then he would've been admitted to the hospital for treatment on Christmas Eve. However, the hospital didn't call us until today and we were told that the biopsy showed level 1 rejection! Level 1 is a safe level that does not require treatment and enables the doctors to decrease Greg's prednisone doses. Its amazing that after having his heart for a full month, Greg hasn't had any significant rejection!

We're grateful that his prednisone doses are decreasing because it has the worst side effects of all of his medications. Greg is still having a lot of confusion at night, waking up not knowing where he is or what's happening, and seeing things that aren't there. We are figuring out some ways to deal with the side effects better (such as making sure I stay in the same room with him as soon as the confusion begins) but it is very difficult for him. Please pray that the prednisone doses would continue to decrease and that the side effects would decrease even faster.

Greg continues to get stronger each day, though some days feel like set backs. Through his hard work at physical therapy, he is now able to walk up and down a flight of stairs without assistance (amazing!). He spends less time sleeping each day and is gaining more and more independence by being able to dress himself, make some of his own food, etc. He's also breathing easier because the diuretics he is on have taken off significant amounts of the extra fluid. He still has a lot of visible swelling but it is finally going down!

It'll still be 2 more months until Greg is allowed to leave the apartment for anything other than doctor's appointments or to have visitors other than the at-home nurse and physical therapist. Since his prednisone levels are still high he is very immunosuppressed and it is too risky to expose him to anyone or anything that is not absolutely necessary. His immediate family was going to visit us for Christmas but couldn't come because one of them ended up getting sick on Christmas morning. We're hoping that they'll be able to come down for New Years, but we have to make sure there is no chance that any of them are sick or have been around anyone who is sick! We'll push back our Christmas celebration with them as long as is necessary - this is a really special Christmas for his whole family and we want to celebrate... safely! Aside from their visit, we are under strict orders to keep all other visitors away for now.

As you can see, Greg's recovery is going better than we ever imagined it would. We know we have a long road ahead of us but it is so encouraging to see Greg getting stronger and stronger instead of sicker and sicker. His new heart is a precious miracle and a reminder to us that we have a good and loving Father in Heaven.

Love,
Elise

End of the week update

2010-12-17T15:36:00.001-05:00

Hi Everyone,

I wanted to give you all an update at the end of Greg's first week home and 3 weeks (yesterday) of having a new heart. As you know from our message earlier this week and Elise's blog update, it's been a difficult week. She did a great job of explaining how things REALLY were early in the week and once again, you can view that at www.gregboros.blogspot.com (even if you don't want to write anything back to them.)

He had an "emergency" visit to the clinic on Tuesday due to increased swelling, difficulty breathing, uncontrolled pain, ? wound infection. Those concerns were all addressed and thankfully, he has been feeling much better since then. He was placed on Bumex (a diuretic) and he said that it felt as though some of the swelling in his abdomen had gone down, which allowed him to breathe more freely. Despite that, the swelling in his feet and legs has continued to increase, along with his weight. I was fearful that his kidneys were failing again, but he explained to us last night that his kidneys are functioning pretty well!

Both of these things are of great concern and we would so much appreciate your prayers that both areas would heal completely without further intervention. Greg still remains anemic and the doctors feel that is related to his kidney function still not being what it should be. They've instructed him to eat a diet high in protein which will stimulate the kidney production of a hormone that will increase his red blood cell production. He said that Elise has been making DELICIOUS food for him to accomodate that "order" and that his appetite is returning! The PT/ OT have been working with him and he is now able to walk the steps, using phone books to decrease how high the step is.

We had a wonderful conversation with him last night and were delighted to hear that his voice is gaining strength again! He sounded stronger and more clear in thought than the last time we spoke and that is such an encouragement. He said that the days this week have been filled with medical appts at home and the hospital, but it seems that he is receiving great home care and that he and Elise are being SO supported by the Mason CRU staff with getting in and out of the apartment/ groceries/ prescriptions, etc. They and we are very grateful!

He was delighted to tell us that they had finally decorated their Christmas tree on Wednesday night and that it was just wonderful to sit and look at how beautifully it turned out despite the fact that they hadn't "labored" over the light, tinsel and ornament placement as they usually would. Another example of Christmas "magic"! He has made it a goal to take a shower and accomplish two "goals" each day - along with the breathing and exercises that he is required to do. He sounded so motivated and proud of the progress they are making, despite total exhaustion for both of them.

His next "outing" will be to see the surgeon for a follow-up visit on Monday, which is extremely well timed, due to the concern about wound infection. They went and had another chest xray done yesterday in preparation for that visit so it will be great to hear what Dr. Spear has to say.

That's all I know for now, but will update you as I hear anything more. Thank you so much for continuing to care and pray - God's attention and answers to your prayers is so amazing to us all. Have a blessed pre-Christmas weekend! I know how busy this time of year is, but remember to take a break and marvel at how God knew our need and provided a Savior for us 2010 years ago and continues to be with us each and every day in all of our needs.

We love and appreciate you all so much!

Becky

End of week update

2010-12-17T13:14:00.001-05:00

Hey Everyone!

I've been meaning to write an update of how things went this week and was just sitting down to write one when I received this update from Greg's mom (included below). She does a great job explaining how this week went and I'm very grateful because I'm feeling pretty worn out right now and didn't really feel up to writing. As you'll see in her update Greg has improved so much this week - its been really encouraging to see him getting stronger each day now that his pain is under control. There are some prayer concerns below but all in all we feel so blessed and encouraged by how things are going. It amazes me that he has had a new heart for 3 weeks already - in some ways the last few months seem completely surreal. Though he has a long way to go physically, most of the time (when he's not dealing with the steroid side effects) he is able to think more clearly than he has in over a year - its awesome to see his brain working with adequate oxygen!! Thank you for continuing to pray for us. We appreciate you a lot.

Love,
Elise

Hi Everyone,

He was seen for his regularly scheduled appt. in the clinic yesterday and they did increase his diuretics a bit, but he believes that the swelling is from the steroids. The change in pain meds has resulted in much better pain control, allowing him to exercise more effectively and breathe more deeply, which was essential for his recovery. He still has some lung expansion issues, but he is definitely headed in the right direction in that department. The area at the top of his chest incision appears to be looking better, but there is an area midway down that is causing some real concern for infection right now. He said that it has grown from about a dime size to a half dollar size in the past couple of days. The doctors are aware of it have increased his antibiotics and keeping close tabs on him. If this area opens up, they may need to "clean it out" and it would have to be packed on a daily basis, allowing it to heal from the inside out. Another issue that has developed is something called a lymphocele where he was punctured so many times between the heart/ lung bypass machine and dialysis catheters. If this does not go away, they might need to open it (allowing it to drain) and their plan would be to place something called a "wound vac" to it which is a sponge like application connected to a motor of sorts that draws the drainage out and allows it to heal. Both of these things are of great concern and we would so much appreciate your prayers that both areas would heal completely without further intervention. Greg still remains anemic and the doctors feel that is related to his kidney function still not being what it should be. They've instructed him to eat a diet high in protein which will stimulate the kidney production of a hormone that will increase his red blood cell production. He said that Elise has been making DELICIOUS food for him to accommodate that "order" and that his appetite is returning! The PT/ OT have been working with him and he is now able to walk the steps, using phone books to decrease how high the step is.

We had a wonderful conversation with him last night and were delighted to hear that his voice is gaining strength again! He sounded stronger and more clear in thought than the last time we spoke and that is such an encouragement. He said that the days this week have been filled with medical appointments at home and the hospital, but it seems that he is receiving great home care and that he and Elise are being SO supported by the Mason Cru staff with getting in and out of the apartment/ groceries/ prescriptions, etc. They and we are very grateful!

He was delighted to tell us that they had finally decorated their Christmas tree on Wednesday night and that it was just wonderful to sit and look at how beautifully it turned out. Another example of Christmas "magic"! He has made it a goal to take a shower and accomplish two "goals" each day - along with the breathing and exercises that he is required to do. He sounded so motivated and proud of the progress they are making, despite total exhaustion for both of them.

We love and appreciate you all so much!

Becky

Ups and downs

2010-12-14T17:16:00.001-05:00

Hey everyone,

I have been extremely busy taking care of Greg since he came home on Friday and this is my first chance to write an update! Greg is doing OK. He had a great first night and day home on Friday night and Saturday but pushed it too hard and ended up completely exhausted by Saturday evening. From Sunday through this morning Greg has experience increased swelling (concentrated in his legs and abdomen), difficulty breathing, pain, fatigue, and incision pain/redness/oozing. Last night was a really tough night for Greg and by this morning it was clear that we needed to call the transplant team and tell them what was going on. This whole experience has been such a steep learning curve for both of us - we were pretty accustomed to dealing with the heart failure related symptoms he had and monitoring them to make sure he didn't go down hill quickly without the doctors being aware. But this is completely different. Not only are we looking for very different symptoms but we're also adjusting to a new heart that has changed the way a lot of his body systems and other organs function. We're also having to keep track of all the signs of rejection and infection which require immediate medical attention- but can be subtle and hard to recognize. All in all we've both felt very confused this week at home and unsure of what we're doing and how he's doing.

Last night Greg and I were discussing how different this experience is from his sternotomy last year (when they opened up his chest with the plan of removing the pericardium around his heart but closed him up instead, realizing he needed a transplant not the removal of his pericardium). Last year's recovery was hard - this is so much harder. He is significantly weaker, having MUCH more pain, unable to go from sitting to standing without help, having trouble breathing, etc. But on top of all that he's also dealing with the side effects of his medications - and is very confused, sees and hears things that aren't there, doesn't know where he is when he wakes up, and a bunch of other unpleasant, unsettling things. These are classic side effects of his medications, but knowing that doesn't make them any easier to deal with. Please pray for him as the mental confusion is in many ways even harder to deal with than the pain.

This morning the transplant doctors decided Greg needed to come to the hospital to be seen by them. Wow was that an ordeal. He had to tackle going down the stairs for the first time, go out into the cold which made it really hard to breathe, and then get into a wheelchair at the hospital - after which a volunteer promptly dropped him because she wasn't properly trained on helping to lift someone out of a wheelchair. Greg had terrible pain and a big scare during that ordeal but thankfully we were already in the transplant clinic and the wonderful women who work at the front desk came running over and helped us get him back in the wheelchair.

After a lot of blood work and a long exam and discussion with the doctors, we felt much better about everything. They changed his medications so that he's on diuretics to get rid of the 20+ lbs of fluid in his legs and abdomen, on a new pain-management schedule to help control the pain so that he's better able to move, cough, and breathe, and on additional doses of his transplant meds to help fight off an infection that he has. They checked his incision and don't think that it is infected - though it is possible that an infection is in the beginning stages. They did some blood work to check for infection - we don't have the results yet. They also did an xray to check his lungs and make sure they don't have too much fluid on them (we're waiting for results), and they examined his chest for instability in the sternum. The doctors considered checking Greg into a rehabilitation facility but Greg asked to be sent home instead and to see if the new medications will enable him to recuperate enough to stay out of rehab. Assuming his test results come back okay, tomorrow a nurse and the occupational therapist will be coming to check on him and then we'll be back at the hospital on Thursday morning for Greg's weekly transplant clinic appointment. The nurse will likely come back on Thursday and Friday as well, and on Friday Greg is getting another chest x-ray - this time for his follow-up appointment with the surgeon who did his transplant. With the home nursing, PT, and OT, Greg has very demanding days and the extra trip to the hospital and next Monday's surgeon visit are probably going to wear him out. Please pray for strength, healing, and any infections or complications to stay away.

In the midst of all of this, we have been so blessed by our wonderful Cru staff team - they have been helping out since our families both went back home last week. I would be totally stuck without them and am so grateful for their help! Greg is not at a point where I can leave him alone for more than a walk to the mailbox, so they are filling prescriptions, picking up groceries, etc. - what a blessing! It is comforting to know that I'm not alone and that there are many people around who are willing to help in any way possible. Getting Greg back home today would have been impossible without help - and I am grateful for friends who have servants hearts!! When we got back from the hospital this afternoon there was a large package at our door and it turned out to be a care package from a wonderful group of ladies in State College. This care package made Greg's day. After watching him experience so much pain, frustration, and disappointment over the past few days and especially this morning, it was great to see a little bit of a spark in his eyes. We both felt unbelievably loved and supported - and as I sit here typing this I'm once again struck by how much all of you care about us. Thank you for being a part of all of the ups and downs he's going through. There will surely be many more of them to come but we are blessed to have a new heart, great medical care, and your love and support.

Thanks so much for praying for us,
Elise

Greg is home and doing well

2010-12-11T17:47:00.002-05:00

Hi Everyone,

Just a quick note to let you know that Greg did in fact get home late yesterday afternoon and is doing well! I just spoke to him and he just enjoyed his first FULL shower in a couple weeks and he said it was wonderful (although exhausting!) He said that he slept in late today - in his new lift chair which he said is incredible. He and Elise are enjoying some "down time" today and they are managing all the medications and medical needs well so far. He did not mention any of the home care services starting yet so I guess that will happen in the next couple days.

When we spoke with him last night, he said that it was awesome to be back home with Elise, where it was peaceful and quiet and he could enjoy "dimmed lighting"... and get to see Hope (their cat!)

Last evening, Smitty, his mom and I totally enjoyed attending a benefit concert that was held for him by the "Circle of Friends" vocal/ bell choir group held at English Lutheran Church in Zelienople. It was such a blessing to be there and be put totally in the Christmas spirit through absolutely beautiful music. We are so grateful for the effort that was made on behalf of Greg and Elise and the generosity of those attending was just amazing. When we called Greg after the concert and told him the amount of money that was raised on their behalf, he was stunned because it was almost precisely the amount that they had to spend to get the lift chair and pay for the ambulance service to take him home from the hospital. ANOTHER example of how God just continues to provide and meet needs over and over again. THANK YOU to anyone involved in last night for being the blessing that you were to him and Elise and to us... we are so grateful.

And last night was just the latest in an ongoing series of physical, emotional and spiritual blessings that you have provided over this year. For every way that you've ministered to ANY of us, please know how much we appreciate you. Last night felt like the final scene in "It's a Wonderful Life"... our little town surrounding us in a time of need. Although I don't wish trial or tragedy on any of you, I do hope that at some point in your life, you'll be blessed to feel such an outpouring of support and love.

I hope you have a great rest of the weekend!

Love,

Becky

Greg is going home!

2010-12-10T21:33:00.002-05:00

Hello to all,

Greg just called and said that he is being discharged! The cardiac biopsy showed a level 1 rejection, which is permissable. I'm not certain, but from what I remember hearing back in January when they were doing the inital transplant teaching, I think I remember them saying that they want to see a low degree of rejection since they then know that they haven't completely wiped out his immune system. They seek to walk a fine line of keeping him immune suppressed and also allowing him to be able to have SOME degree of reaction to a foreign body in his system. So, perhaps this is it? Regardless, it is acceptable for him to go home and he does not have to undergo a biopsy next week since he has had two good biopsies. He will have an appt at the transplant clinic though and will have lab work done.

He sounded exhausted when he called. The day has been FULL thus far and he still needs to get home! The therapist came this morning and worked with him to successfully be able to stand up out of the chair, but, since the chair he has at home is even lower, Elise went this afternoon and bought a lift chair/ recliner which will be awesome for him. Some of the CRU staff are going to pick it up at deliver it to their apartment this afternoon - how wonderful!

He failed his step training, so he will be taken home by a professional wheelchair/ ambulance service who will carry him into the apartment. He sounded a bit breathless on the phone, so I hope his discharge at this time is a wise thing, but we can only depend on the wisdom of the doctors who have directed him so excellently all this time. He will receive services from visiting nurses, physical therapists, and occupational therapists, so hopefully all will go well and he will recover even faster in the quiet and peace of their home.

I asked Greg about his blood count and chest xray and he hurredly said that they were fine. He was just kind of exhausted and couldn't talk any more, so I hope that all is stable in those areas also and trust that they must be for him to be getting discharged.

As Elise mentioned in her blog post last night, although they are so looking forward to being home together after two months, there is a certain degree of anxiety associated with discharge from the hospital and the safety of having staff there any time they need help. Will you please pray for a smooth transition home today - that Greg would experience physical, emotional and mental peace through the whole thing and that Elise would also feel comfortable and confident in him being there? Also, please pray that the home health professionals assigned to them would be clinically excellent, kind, compassionate and efficient?

We continue to trust that this is God's perfect plan and timing for him to be released today and I pray that it is a sweet, wonderful homecoming for them both.

I'll let you know as I hear any more! As always, thank you for your prayers!

Love,

Becky

Prayers needed for Friday- possibly going home!

2010-12-10T01:25:00.001-05:00

Hi everyone!

This is the first time I've written in a while and I want to start out by saying THANK YOU! I still cannot believe that we are on the other side of Greg's transplant - what an amazing gift - and each of you have had a huge role in helping us to get to where we are. Especially as we prepare to leave the hospital and all of the friends we've made there (you know you've been there too long when you're worried about missing the woman who cleans your husband's hospital room!) it is so comforting to know that you are rallying around us still. We are over the big hurdle but we still have quite a journey ahead of us and we would appreciate your continued prayers. Hasn't it been amazing watching God answer so many prayers this year and especially these past two months? I have a lot to think about and process but I know that God has shown himself to me in ways I never expected. One thing that has been so incredible is hearing Greg's phenomenally intelligent transplant doctor tell us over and over again that he has NO idea how or why the body can heal the way it does after a transplant. And he has NO idea how Greg's electrical conduction didn't completely deteriorate while waiting for transplant based on the condition they found his heart in during the surgery. It has become very apparent that medicine (even the most advanced medicine) cannot explain everything that happens. God has been at work in Greg's body in an unmistakable way. Incredible!

But it is late and I have some prayer requests I'd like to share with you before I go to sleep. They are still hoping to discharge Greg from the hospital tomorrow but it'll depend on a few things: 1. We are waiting for the results of the heart biopsy Greg had today. If he has a 0 or 1 on the rejection scale he can go home. If he has a 2 or 3 on the rejection scale he'll need to stay in the hospital for 3 or more days to get IV steroids. 2. Greg's chest x-ray did not look very good today and his red blood cell count continues to fluctuate and not go up the way they'd like it to. The surgeons are concerned that Greg may have some internal bleeding around his heart. They will be doing a echocardiogram tomorrow to determine if he has internal bleeding. I'm not sure what they'd need to do to fix it but it would mean more days in the hospital. 3. Greg must be able to go up stairs and take a (sitting) shower before he can go home. His physical therapy appointments kept getting rescheduled this week so he has not done either of these things yet. PT will be working with Greg first thing in the morning to see if he's physically strong enough to go home.

As you can tell tomorrow is going to be a really strenuous day for Greg even if he doesn't end up going home. Please pray:

For a good result on the biopsy - a 0 or 1 on the rejection scale!
That Greg's echo will look good and that he is not bleeding internally.
That Greg will have the stamina and balance to go up stairs and shower and that PT would not drain him of all energy.
That the doctors will make a wise decision and not send Greg home before he is strong enough to face the challenges of being home (climbing stairs to get inside, low chairs, a tub, etc.). We would rather he stay in the hospital for an extra day or so than come home and realize that he wasn't ready to come home.
For us as we transition to Greg being home. It may sound odd but since Greg has lived in the hospital for the last 2 months it is going to be a huge change for both of us when he comes home. We are so excited for him to be home - but it's also hard to leave the safety and comfort of the hospital. I find that I am nervous about taking care of him and he is concerned about adjusting to not having a nurse nearby in case any problem arises. Thankfully we will be having a nurse come to our apartment (for a week or so) to check on Greg and also a physical therapist will be coming to make sure Greg is progressing physically. We have a lot to process and we need to figure out a whole new way of life - new medicines, new routines, new concerns (immunosuppression), etc.

I will do my best to keep you updated on his recovery - I'm not sure how often I'll be posting because there is a lot I need to do to take care of Greg - but I hope to be able to let you know how things are going.

Thank you so much,
Elise

Second Post Transplant Heart Cath/ Biopsy Done - waiting for results

2010-12-09T21:32:00.001-05:00

Hi Everyone,

I'm writing this from home in PA - it's great to be back, but it's hard to know that Greg is still struggling in VA. We know that he is definitely on the road to recovery but it's hard leaving him while he's still not feeling too great. However, as he and I prayed last night - we need to remember that God is STILL completely aware of what's going on and not one single thing is going to happen that he's not in control of. It makes it so much easier to be at peace knowing that.

Yesterday, after walking the two laps, he was EXTREMELY fatigued for the rest of the day - perhaps just too much at once? He did walk one lap twice more throughout the day, even though it was hard and he was exhausted. By bedtime last night, he was just feeling drained physically and emotionally. The toll of this two month hospital stay, the huge surgery and the extremely high dose steroids has all landed on him. He is desperate to be able to go home and yet concerned because he doesn't feel strong enough/ independent enough right at this moment. And due to repeated interruptions by every doctor, therapist, nurse, social worker and well meaning hospital personnel who have grown attached to him and have heard that he's going home soon, he's just not getting rest.

Today, he had his heart cath/ biopsy and Dr. DeSai said everything looked good. The biopsy results will be back tomorrow. They are graded on a scale of 0-3 - if he has a 0 or 1, he will be permitted to go home and if it's a 2 or 3, he will have to stay through the weekend and receive extra steroids. They also removed the dialysis catheter from his chest today. As a result of both of those procedures, he was "bedbound" for part of the day and wasn't able to participate in the physical/ occupational therapy that he needs in order to be ready to go home. The therapist plans to be there bright and early in the morning to work with him in anticipation of possible discharge.

There is a little bit of concern because his blood count dropped a little again today and is at a level where he could be feeling fatigued as well. Dr. DeSai didn't feel that there is danger of him bleeding anywhere and they're hoping that as his kidneys return to normal, their part in promoting red blood cell production will pick up again. Please pray that his blood count rises mightily and that he gets the energy that he so badly needs.

Another concern is the side effects of the steroids. I didn't realize until last night how much he is dealing with in that regard -- seeing things/ confusion, etc. It's so disconcerting and frightening, even if you KNOW that there is a logical reason for what you're experiencing. It's troubling him alot and so if you'd please pray that he would have sweet, amazing, God-filled "steroid experiences" instead, we'd be so grateful. There is nothing that any of us can do to make those effects go away and he will have to continute to endure them for about three months until he reaches his daily dose of about 10mg/ day for a life time maintenance dose. That gets adjusted any time there is rejection.

Elise's mom, Rosemary, will be leaving to go back to State College tomorrow, so Elise and Greg will be on their own again - fortunately with the CRU Staff "family" ready in the wings to help as needed. They are such a blessing and we are so grateful that they are there. We are so grateful to the Newman's who hosted all/ parts of our family during this two week stay - what a blessing!

Also, thanks to ALL of you who have helped us and them in so many ways during this time. You are an incredible, amazing group of people and we are SO blessed to know you. Thank you for caring and continuing to pray and encourage. I'll let you know tomorrow when we hear any more news about the biopsy/ discharge.

Love to you all,

Becky

Greg just walked TWO laps around the unit

2010-12-09T07:19:00.000-05:00

Hi Everyone!

I'm on my way to get some lunch, but just wanted to stop and give the "daily update" that you all are so kind to care about :)

Just a little while ago, Greg walked TWO laps around the nursing unit with just a couple quick rests along the way! Yesterday, he walked one lap, two times! He is in pain and is fatigued but is so motivated to get up and get moving :) He still seems to be on track for discharge on Friday, as far as we know. Today, they are supposed to take the dialysis catheter out of his chest, but I'm not sure when they'll do that. He also needs to have the pacer wires removed. It was exciting to see that as he walked, his heart was able to respond to the activity and raised from 76 to 82! Isn't it amazing that less than two weeks after implant, it's getting in rhythm with his body? Just amazing! The rhythm remains steady and solid without any IV medication assistance! Tomorrow, he will have his second biopsy, so please pray or more good results. They've been backing off on his steroids, which is wonderful, and is allowing his blood sugars to remain in good control without alot of insulin.

Elise is excitedly preparing for his homecoming on Friday! They will be able to decorate a Christmas tree (has to be artificial this year, but that's OK!) and just enjoy being home together after him being in the hospital for 2 months!

I'm planning to head back to PA tomorrow morning, knowing that he is definitely on the right track! There will ups and downs for sure in the future, but the outlook is SO wonderful and he and Elise are SO ready to get on with life. THANK YOU for all the cards, packages, emails, texts and calls that continue to come in.... this has definitely been a season of miracles and blessings!

I won't be sending emails as frequently since I won't be here, but will keep you updated on big things as they happen. Elise usually posts updates on the blog, so don't forget to sign up for the automatic emails that come from that when she posts. Again, that address is www.gregboros.blogspot.com

I hope you're having a great "over the hump day".... I feel like we are REALLY over the hump!

Love and thanks to all,

Becky

Hopefully going home Friday!

2010-12-07T14:16:00.002-05:00

Good Morning!

It's about 1:15pm on Tuesday, and I just left Greg's room after getting to sit in on extensive discharge teaching from MaryBeth, who is the post-transplant coordinator. It sounds like they are planning to discharge Greg on Friday, if everything continues to go well. Isn't that amazing? :) He has been in the hospital for almost 2 solid months and now he will finally return home WITH A NEW, STRONG, HEALTHY HEART in his chest- in time to celebrate Christmas! It feels like the "play" button on their lives is finally going to get pushed again, rather than the "pause" that has controlled 2010 -- just waiting for a heart. What a liberating feeling! He brought tears to my eyes last night when he told me that he is starting to feel "curious" about things again and anxious to learn about new things. He said that for so long, he just couldn't focus and didn't want to learn anything new-- how exciting to have his mind starting to wake up again as a result of increased blood flow to his brain!

Elise and I didn't really get a chance to talk to him for too long before MaryBeth came in, but we did find out that he had a relatively good night and feels a little more rested this morning. The kidney specialist also came in and said that his kidney function is continuing to improve and that he will not need further dialysis!! The dialysis catheter in his chest will be removed! YEAH!!!

They did an EKG this morning which will probably determine if they can remove the external pacemaker wires that are still in his chest - that is looking good too! His next cardiac biopsy will be on Thursday and if it shows no/ extremely minimal rejection again, they won't do one for two weeks, but otherwise he will have a repeat in one week. His medications/ steroids will be adjusted according to the results of those biopsies.

And more good news is that so far, his blood sugars have been pretty much under control and since they are in the process of decreasing his steroids, it's possible that he won't even have to be checking his blood sugars at home, as he had initially been told that he would.

They are ordering visiting nurses to come and see him a few times a week for a week or two, to monitor his incisions and his overall condition. If needed, they can also order home physical therapy. After three months, they will do a stress test, and he will then start cardiac rehab. Until then, he is encouraged to continue to move and walk as tolerated at home. Cardiac rehab will bring more intense, monitored exercise and weight lifting to strengthen his muscles.

It sounds like alot more things become possible after that three month mark - of course all dependent on his status at that point. It's just exciting to hear how many things he WILL be able to do and so much to look forward to. SO AMAZING!!

That's it for now! Just wanted to give you today's update - as always, thank you for your prayers - know that they are being answered!

Love to you all,

Becky

Prayer needed for pain relief and increased blood count- otherwise doing well

2010-12-07T14:16:00.001-05:00

Hi,

It's 4PM Monday as I write this from the hospital library. Greg is doing well, but is extremely fatigued and having alot of pain today.

As you know, prayers were again answered and the Steelers won last night ! He thoroughly enjoyed the game and joined in cheering and trying to wave his Terrible Towel and definitely raised his heart rate! Maybe a little too much cheering?? After we left, he used the bathroom and while doing so heard a "pop", followed by a ton of bleeding from one of his chest tube sites. He had bled quite a bit before the bleeding was controlled and today, his blood count is down alot. For those of you who are my medical friends, his hemoglobin is down around 7.5. It has been low as a result of his renal failure, but it did get even lower. At this point, they are not transfusing him, but will instead give him some other medications to help increase his blood count. The whole experience was quite frightening to him and exhausting, so by the time he got to bed, he was pretty spent and in alot of pain.

This morning, Ruth, the physical therapist came to see him and since she is very "motivated" on behalf of her patients, she had him get up and walk 75 feet down the hall, stopping at each nurses charting station where there was a stool - getting up and down- and then returning to his room where she put him through the litany of other exercises that she has him do. He said he was trembling inside from pain and exhaustion by the time she was done with him, but that she announced in her Brittish accent that he had done "BRILLIANTLY"! You have to hear him say it, to appreciate her tone :)

He finally had fallen asleep after all this and was awakend by the surgical physician's assistant and since he didn't wake up in a completely alert state, she feared that his blood gasses were bad and ordered that his pain meds be stopped. Needless to say, that made him feel really upset, understandably. He questioned it and so she ordered that they draw blood gasses on him, which is quite painful. Fortunately, they were OK, except for his oxygen level being a little low. This also is understandable because he was not breathing deeply since he had unresolved pain! In the end, Dr. DeSai came in and offered a plan for pain relief that should work and when I left his room a little while ago, he was anxiously waiting for his first dose.

He had been told earlier in the day that he was going to receive dialysis today, but it had not been started yet when I left the room. His weight is up a bit, but he is not short of breath! His kidneys are working, but just not quite good enough yet. He said that he feels bloated in his abdomen and legs, but it's not overly evident.

He is continuing to be a true "Braveheart" and I told him today that I'm so proud of him for trying so hard to get better and for being so courageous. He said that he doesn't feel brave inside but I am continually amazed at how he takes so much in stride (politely and gratefully) - I don't think I'd be such a good patient.

That's about all I know for now -- if you'd please pray for good pain management that would allow for maximum deep breathing/ coughing and for an increased blood count that would provide more energy, we would be grateful.

Hope you're all having a good Monday! Please know how much you are appreciated!

Love,

Becky

Biopsy showed no rejection! Praise God!

2010-12-05T21:56:00.001-05:00

Hello Again!

I'm SO happy to write this note! It seems that we've been your doorsteps so many times when there is a crisis, but today, I'm here to share a definite answer to your prayers! NO REJECTION on heart biopsy! Isn't that amazing, after all the setbacks of this past week? And that's not all... they almost have the Isuprel IV drip taken down and his heart rate has been in the high 80's/ low 90 beats per minute. Dr. DeSai had explained to us that they're not sure how/ why but that Greg's nerves (that had been severed from his old heart) would "find their way" into his new heart and eventually innervate it to allow his heart rate to be normal. That seems to be happening very quickly and even without therapeutic levels of some of the medications on board that should help that to happen. This whole week has been an amazing testimony of answered prayers for his preservation and restoration in so many ways. We are in awe of it all.

More good news... this morning, there was some concern about his lung status and so he was taken to the XRAY department for full front/ back/ side chest xrays and those results showed that there is not a problem! He still needs to continue to do the breathing exercises that they want him to do (that hurt and make him cough!), but he is not needing to wear any supplemental oxygen right now!

And MORE good news... his kidneys appear to still be 'waking up" with his renal lab values heading in the right direction. The renal doctor came in today and ordered some diuretics for him, but they are not going to do dialysis on him today. The hope is that he will continue to improve in that department and that he would not need any further dialysis.

The doctor said that if a bed was available, he would be transferred to the step-down unit today. Then, if he remains stable, kidneys progress, and he gets on with his physical therapy, he should be headed home fairly soon!! YEAH!!!! He will be in the hospital 7 weeks tomorrow, so you can only imagine how anxious he and Elise are to have him back at home :)

He had a wonderful visit with his Aunt Ellen and the twins this weekend and now is looking forward to watching the Steeler game with Smitty tonight! Do you think they could win just for him??? That would be the perfect end to the perfect weekend! :)

He didn't mention anything about "Greg Radio" today, so I'm not sure how bad that is right now, but the blessing is that since he showed no rejection, they can back off on the steroids a little I think!

That's it for now - I hope you can sense a wave of encouragement and relief coming from Fairfax, VA when you read this. Thanks for helping us to get through this week! We hope that you're all well and enjoying these special days and weeks before Christmas! Know that we love and appreciate you all!

Becky

Smitty will be headed back to Zelie for the week and will return here next

An awesome evening last night. Kidneys starting to work

2010-12-05T05:58:00.003-05:00

Good Morning!

And I can say that after a wonderful late evening visit with Greg last night. Ellen got to town with the boys and we enjoyed a brief late evening visit, during which Greg looked better than I've seen him all week. We continue to marvel at the fact that there is color in his cheeks and last night we saw his usual smile, along with his eyes looking alot more "normal" than I've seen them all week. He is extremely exhausted and has so much discomforthat especially in his chest from coughing intentionally and unintentionally. I can only imagine how much he hurts. But we are so proud of him because he realizes what he has to do in order to get better and is SO ready to do the hard work.

The big news is that after his dialysis yesterday (I think I heard that they took 3 liters of fluid off him), he stood up and passed almost 3/4 liter of urine ON HIS OWN!!! Isn't that incredible!!! It would seem that his kidney are waking up, just as we have been praying.... God is so good to answer our/ your prayers over and over again!

More big news... as of 10PM, that were weaning off his Isuprel IV drip which has helped with the connectivity of his heart and helped with the conduction/ rhythm of his heart. Even though they were at a level of medication very close to being completely off, he was maintaining a heart rate of about 80 beats/ minute. NO PACEMAKER! Please pray that his new heart would continue to get grafted into his body and function like it had always been there! Obviously, no news on the biopsy yet, but we'll let you know when there is.

The high dose steroids that he is receiving are causing him some difficulty sleeping, some vivid disturbing dreams and constant music playing in his head!

He told us that "Greg Radio Station" has been playing continually since yesterday afternoon and was attempting to sing along with Mercy Me song that was playing as we were visitionng. He made us laugh because he said that you'd think if you were going have your own radio station, it would only play music you like, but he was disappointed with some of the selections!! We smiled but obviously, this is difficult for him so please pray that it goes away quickly. The Post Transplant Nurse Practioner, Mary Ann, said that it would as the steroids get tapered down. He has alot of side effects of steroids yet to endure like tremendous bloating, weight gain, mood swings, etc. so please be praying in advance that these would be as gentle as possible.

Mary Ann did some teaching with them yesterday and made him VERY happy when she told him that he could be camping in 3-6 months and that although he would have to wear a mask while chopping/ collecting wood because of possible molds, that he could take the mask off while sitting at a camp fire.... he was ELATED!!! They also discussed the second honeymoon plans and she said that they can't leave the country for a year and even then they prefer they avoid the Caribean as was planned because if he had a problem, he would wind up in a Mexican hospital which wouldn't be good. He asked about Hawaii and she said that would be GREAT since they have a transplant program there... so I think that is the dream destination!!!

He is eating some solid food and just to obvserve swallowing precautions (clearing his throat/ coughing after each swallow). They said that his vocal folds are not closing properly (hence the voice disruption) which is also making him more prone to aspiration pneumonia, which would NOT be a good thing with his immune system suppressed. His voice seems a little bit stronger and so our prayer is that this would "right itself" also.

By the end of the day, we're hoping that he will be moved to the 3rd floor "presidential suite" again! :) The nurses have been faithfully coming to visit him and can't wait to have him back! That makes him feel really good :) And speaking of visits, Bill, the OR nurse whol prayed with us in the preop area and also in the OR during surgery, has come each day to visit Greg and pray with us and him. Another angel that we've encountered through this saga.

I hope your day is a good one! Happy Weekend!!

I'll let you know later how today goes.

With a happy heart,

Becky

Heart Biopsy/Cath Done Today

2010-12-03T15:35:00.002-05:00

Hi Everyone,

I am actually writing from Smitty's computer and therefore am able to send this message to everyone on our "updated list". In case this doesn't happen again soon, please know that each time I write, it is posted on the blog at gregboros.blogspot.com On that website, you can sign up to receive all the email updates sent to you automatically, and you can leave comments if you care to. Or, you can always respond back to sboros@zoominternet.net and we'll get your messages on Smitty's Blackberry.

SO... the important news is the Greg was taken to the cath lab late this morning for his first heart biopsy/ cath, which seems to have gone well. We won't know the results of the biopsy possibly til Monday, but please keep praying for NO REJECTION! It is likely that there will be some rejection since that's a common occurrence in the beginning, so we need to not get discouraged if it is in fact there. The doctor said that the pressures are a little high in his heart still, which indicates that he will need dialysis today again. He said that the heart looks good and that the cardiac output is 2 1/2 times what his old heart was. He also said that with time, the nerves to the heart that regulate the rate/ response to exercise, etc just kind of "find their way" to the new heart and make it regulate appropriately. Isn't the human body an amazing testimony of God's ability?

We heard earlier in the day that Greg has a little bit of "collapse" at the base of the left lung. This is NOT uncommon and can be resolved by increased coughing/ deep breathing/ sitting up in the chair/ moving around, etc. All these things have been almost impossible for him to do because of everything he has been dealing with since surgery, but he is ready and WANTS to get better! Dr. DeSai did say that the reintubation/ being put on the ventilator caused him a real set back and it sounded like he COULD possibly be in the hospital up to a couple weeks more, but as with everything, I'm sure he could get out sooner with some good days in a row. It sounds like he will definitely be out, but please be praying HOME FOR CHRISTMAS!!! That means an awful lot to both him and Elise.

I'm hoping that they will allow him to eat a little bit of food today since his procedure will be over and his intestinal tract is working!!

They also were making some changes to his pain medications today that will hopefully help him to be able to move a bit more freely, along with coughing and deep breathing more effectively. Despite the tremendous pain he has been in, he has been a CHAMPION at making himself do all the things that are necessary to help him recover. I told him that he has given a new definition to "BRAVEHEART" - one of his favorite movies!

There is a chance that he will be transferred back to the step down unit (hopefully the presidential suite - room 305) again today, but if not, then tomorrow. All the nurses from up there have been coming down regularly to see him and cheer him on and can't wait to have him back again. The VAST majority of the are an awesome group of caregivers.

Smitty's sister, Ellen, is bringing Tim and Nate down for a visit this weekend and they should get here this evening. Please pray for safe travel for them and for a wonderful visit for the boys. Greg is SO exhausted that the visit will have a different "tone" than usual when they are together, but it will just be good for Tim and Nate to see him!.. and also Ellen!

That's all I know for now - hope you're all well and enjoying your Friday!

As always, thanks for your prayers!

Love,

Becky

December 1. Kind of a tough day

2010-12-01T21:58:00.000-05:00

Hi,

Today has been kind of tough. Although Greg is stable in terms of staying off the ventilator, and is gradually waking up, he is still in a state of "fog" and agitation - surely caused by the massive surgery he had, all the drugs he had, and having NO idea where two days of the week went. He looked at the calendar today and whispered "it can't POSSIBLY be December 1st". I tried to recount all of what has happened, like we all have many times, but he is just so restless and uncomfortable that it's just not sinking in.

We've had some issues today trying to get the staff to give at least a small dose of some kind of pain medication and he finally did get an Ultram at 5:30PM, but had had nothing all day. I completely understand the need for him to breathe properly, but it breaks my heart to see him SO uncomfortable from his incisions, tubes, catheters and just being in bed for five days. I'm praying that a "middle ground" solution to his discomfort will emerge tonight. He still has not had all of his specialized attachments removed, and so he can't get out of bed yet, although they did place his bed in a chair postion.

He is scheduled for a "short run" dialysis tomorrow - today they took off 2500cc in three hours and he had quite a bit of pain afterwards. the surgeon did talk to Elise tonight and told her to not be discouraged. He said that he has had patients that were on dialysis for six months after cardiac surgery and then all of a sudden, their kidneys started working! We're praying that his kidney function gets restored quickly!

He is also scheduled for his first cardiac biopsy for tomorrow, if he's able to hold still, which seems doubtful at this point but we'll pray that it happens since this is the test that shows if he is having any rejection of his new heart.

He does seem to be swallowing better tonight and actually was allowed to have some applesauce and a few bits of ice cream and did well with it. I am a little concerned about his voice - we're hearing nothing but whispers so far and I'm hopeful that it will quickly resolve and that no vocal chord injury occurred during the second intubation/ ventilator experience. Greg has a beautiful, strong voice that he uses ALOT and we're trusting that it will return to normal.

So, if you'd pray that he would have excellent, knowledgeable, kind nursing care tonight and that he would have relief of his discomfort and get some good, restorative sleep, we would be grateful for him and us!

I hope you all had a good day today and that you and yours sleep well tonight!

Blessings to you all,

Becky

Wed am update. Pray for comfort, clarity and deep breaths

2010-12-01T08:14:00.002-05:00

Good Morning,

Well, yesterday was an extremely "sleepy" day. Greg had been so heavily medicated while he was on the ventilator again to keep him calm and comfortable that even after they turned the medications off yesterday, it took hours before he even began to wake up. The removed the breathing tube/ ventilator close to 2PM and in all honesty, I was afraid that he wasn't ready but I was wrong! He initially did so well, maintaining a high oxygen concentration on just minimal oxygen through his nose. After about three hours, his oxygen level dropped significantly and they had to put a face mask on him too,but through the night, they were able to remove that and currently he is again only on a low flow through his nose, It's very important that he gets awake and clear enough to breathe deeply and effectively in order to prevent pneumonia or any other lung complications.

Just as big an issue today is his mental status - the medications, procedures and ventilator for past two days has left him in a spot of confusion about what is going on. He knows very well how uncomfortable he is and that he feels awful, but is having a tough time putting it all together. He has minutes where he is very clear, like this morning when he was asking when he could take a shower, but earlier, he thought Elise was a gummy bear! Yes, he makes us smile even now! Please pray that the effects of the medications would clear his body/ mind so that he would not be frightened or confused about what is going on. It's difficult for the nurses to properly medicate him for his pain because his respirations get depressed by the pain meds and it also causes further confusion. I can only imagine how much he hurts as a result of everything and I pray that his medications can get properly organized as he clears mentally.

Another concern for today is swallowing - they have ordered a "swallow test" to make sure he is not going to aspirate what he takes by mouth into his lungs, since he has choked on a few mothfuls of watersince yesterday. His anti-rejection meds are due soon, so we just don't want there to be any delay to those.

They are changing his dialysis today from continuous to intermittent, and they have removed the Swan Ganz catheter into his heart. If they wind up taking out some other "lines", they will be able to get him up to the chair, which would be a good thing! So, If you'd pray along those lines as well, we'd be grateful.

Smitty arrived safely yesterday and it's such a blessing to have him here. Rosemary is still here too and her presence has been a real comfort to Elise. Elise and I are hanging in there -- pretty tired but glad that we have each other to provide Greg the support he needs while having a chance to catch a little nap here and there. We sort of feel like Tom Hanks in the move "The Terminal", where he lives in the airport -- the third floor lounge has become "home" for now!

That's it for now - I hope that you all have great days today and that you're supported by people who care with all the tough things in your lives, as we are. We know that God is in control of every detail of the day to come and we trust that it is all for good.

Love to you all,
Becky

Greg is off the ventilator Praise God

2010-12-01T08:12:00.000-05:00

Thank you for your faithful prayers today and ALL the notes of encouragement! As usual, God has answered our prayers and as of 1:50PM, Greg is off the ventilator! He is still extremely sleepy and in all honesty, I was afraid that they were removing the breathing tube/ ventilator too soon, but, his nurse felt confident that it was the right time and I believe she was right :) Although he has not spoken to us yet, he did smile when he saw me and when he saw Elise -- such a sweet confirmation that our Greg was still with us! I would imagine that he's not speaking because he remains really sleepy, plus his throat is probably very sore. Smitty just got here a little bit ago and he definitely turned his head toward Smitty when he heard his voice.

Elise and I remarked that his color is really good - actually better than before surgery! We trust that he has in fact received the perfect heart!

His kidneys haven't changed much in terms of output, but as the kidney doctor just reminded us, they have taken SO much fluid off, that his kidneys haven't had to put very much out. They are now cutting back on the rate of fluid taken off and beginning tomorrow, he will be on intermittent, rather than continuous, dialysis which will allow him a little more freedom of movement.

We were told today that the autopsy on his own heart did in fact support the ARVD diagnosis, which is no real surprise, but comforting nonetheless that we know for sure what was wrong. We were told that when they actually removed his heart from his chest, it was in even worse shape than what they had imagined and that his life was truly in danger. We're SO grateful for God's provision at just the right time.

We are hoping for a quiet rest of the evening - with him gradually waking up more and having NO memory of this recent time on the ventilator. His nurse did a FANTASTIC job of caring for him and getting him through this experience in a non-traumatic way. We're very grateful!

That's it for now - we will update in the morning! THANK YOU FOR EVERY KINDNESS AND ENCOURAGEMENT THAT YOU HAVE PROVIDED FOR US... I can't imagine getting through this alone.

Love to you all,

Becky

Tuesday morning. Lots of prayers needed today

2010-11-30T09:57:00.000-05:00

Good Morning Everyone,

Greg had an uneventful day and night for the most part. They have been focusing on getting fluid off of him and it has been successful. As of this morning, they have removed about 7000 cc (7 liters) of fluid from his body. Unfortunately, his kidneys haven't really started working too well yet - only about 2 tsp of urine/ hour. Please pray today that they "wake up" strong and healthy. There is some concern that he might have some degree of kidney damage after all this, due to the extremely high doses of diuretics he needed to keep him alive preoperatively and the situation he is in now. It's our prayer that the damage would be very mild, and not affect his daily life, and from what we've been told, we have every reason to believe that will be the case.

His new heart is dealing with all this fluid volume very well apparently. They have had his temporary pacemaker on continuously, so I haven't seen too much of his own rhythm. They did do an EKG this morning and an echocardiogram yesterday and I'm anxious to hear from the doctor about both of those. They have had no problems maintaining very good blood pressure while removing large quantities of fluid from his body thru dialysis, so that's a good sign. He was supposed to have his first cardiac biopsy on Thursday or Friday, but from what they said, that depends on if they're able to move him to the transplant biopsy lab. He is connected to MANY big, intricate machines/ connections which make it pretty much impossible to take him anywhere. The doctor who is the head of the cardiac ICU told me this morning that since he is not showing any signs of rejection, he doesn't believe that it would be a problem to wait to do the biopsy, but that will obviously be a topic of discussion with the transplant team.

His lungs seem to be functioning well and are not congested, which is a huge praise. Today, they are planning to attempt weaning him off the ventilator again and that is where we need HUGE prayers. They will have to stop giving him all the sedation in order for him to be awake enough to breathe on his own and that time in between being sedated and getting the breathing tube/ ventilator off is a really frightening time to him. Please pray that it goes smoothly and quickly and that he is able to breathe well on his own once he is taken off. This is a huge area that we need prayer for today.

A praise for today is that his "gut" seems to be waking up a little and they are hearing what's called bowel sounds, meaning that the tube feeding he is receiving is actually moving through his stomach/ intestinal tract, allowing him to receive some much needed nutrition. He has not really had anything of substance to eat since last Wednesday and this is so important to aide in his healing. The fact that he is on high dose steroids makes it harder to heal as well, so nutrition is really important.

I'd also ask for prayer for Smitty today as he travels back down to be with me. It will be SO good to have him here again. Plans are being made for Tim and Nate to be brought back down again this weekend too. Please keep them in your prayers - they both have difficult academic weeks this week and with all this travel and constant worry about Greg, I'm sure it's hard to concentrate.

Elise and I are doing OK - we have gotten some sleep the past two nights while Greg was sedated so heavily, so that helps. Her mom, Rosemary, has been here all week too which is so nice for Elise. Today feels like it will have some challenges so please just pray that we are strong and optimistic and that we can remember the sweet feelings of blessing from Thursday. The same God who orchestrated all of that is in charge of today and all that it holds and we can trust that He will carry Greg and us through!

Thank you again for your sweet notes of encouragement and your prayers. You make a difference in our lives on a daily basis. I will let you know later how things are going.

With sincere appreciation and love,

Becky

Monday morning update - things are going better

2010-11-29T09:33:00.001-05:00

Good Morning,

It's now almost 9AM and Greg had a good night. The good news is that as of the shift change, they had taken about 2500 cc of fluid off Greg through dialysis. They experienced no problems with the dialysis catheter through the night. At this point, his kidneys are not yet producing any appreciable amount of urine, but they believe that once they get this virtual "pool" of water out of his system, his own kidneys will be able to handle normal function. The doctors/ staff have all reassured us many times that this is not uncommon to have happen and that there is/ was nothing to indicate that dialysis would be a long term thing for Greg. Getting the fluid off his body has had a really beneficial effect on his heart and the numbers are showing much less fluid pressure in his new heart, which continues to do a fantastic job, despite all the strain it is under.

The temporary pacemaker is working properly, which is also a blessing since they really want his heart beating at a rate higher than it's normal rate, to help it graft into his body and to also help move some fluid away. He obviously remains on the ventilator, and we think he will be through the day, into tomorrow. His chest xray this morning showed much better expansion of his lungs and his blood gases are now excellent.

They think that they might remove his chest tubes today, since they are not draining any significant amount of fluid. Please pray that would happen, since he is heavily sedated right now and having them removed in the past has been kind of traumatic for him. It would be ONE sweet thing to wake up to!

The staff is doing an excellent job of keeping him sedated right now. The amount of drugs that Greg requires to be sedated is vastly larger than most people. They have him on a continuous drip of a medication that usually totally knocks people out and allows them NO memory of what has happened. However, we know from past experience that he has vivid memory/ nightmares related to time spent on ventilators. The staff has taken that experience seriously and are supplementing his regular sedation with pain medication and other meds to further sedate him, since he does wake up when the suction/ turn him. Since he is going to be on the ventilator through tomorrow, there is no need to restrict the amount of sedation he gets right now, but when they get closer to getting him off the ventilator, they have to bring him back to consciousness, which is a really difficult thing for him to go through. They are being thoughtful already about how they can further manage his medications during that time period to make it as easy as possible for him to transition safely off the ventilator.

We realized that another benefit to him being on the ventilator is that they have been able to put a warming blanket on him that he normally could not tolerate. As a result of being on dialysis, his body temperature has been cooled ALOT and it is beneficial for him to be kept at a normal body temperature.

Elise and I are hanging in there as well -- thank you for the prayers said on our behalf as well. We each got some real sleep last night since Greg was sedated, was being excellently cared for and wouldn't benefit from us being at his bedside. It helps so much to have some sleep. We have made a decision to remind ourselves each time that we feel discouraged that the biggest thing to focus on is that Greg has a new, strong, healthy heart in his chest and that this is a just a "wrinkle"in the healing process. We trust that him having to go on the ventilator was the BEST thing for the situation overall .

Thank you for all the notes of encouragement- it brought joy to my heart to read them this morning. And thank you for continuing to pray us through this journey.

I'll send a note later today with an update.

Love,
Becky

Greg's current mailing address

2010-11-28T19:21:00.001-05:00

Hi again,

I was just asked where people can send cards and realized I never gave you his new room number. It'll be a while until he's awake but I know he'll be encouraged to wake up from the ventilator and get to hear the messages in the cards that are sent.

Here it is:
Greg Boros
CVICU Room 216
Inova Fairfax Hospital
Falls Church, VA 22042

Thanks so much,
Elise

Greg is going back on the ventilator

2010-11-28T19:11:00.001-05:00

Hi everyone,
We just got some hard news that Becky explains in the email below. Today has been so hard but we're trusting that this is the right decision. Thanks for praying.
Love,
Elise

Becky's email:

Hi again - another troubling occurrence in a difficult day. They just did blood gases on Greg and found that he was extremely acidotic , which is hard to explain but is related to all the kidney issues that he is having. The doctors have determined that in order to protect Greg's new heart, and to keep him from having a respiratory arrest eventually, it's necessary to reintubate him and put him on the ventilator for 24-48 hours. During that time, he will be kept sedated completely, while they do dialysis and get the fluid off of him and hopefully allow his kidneys to begin working. This is a really smart and necessary plan and we are grateful that they are so attentive, but it feels like a real blow right now.

Please pray that he will have NO memory of this intubation and that his "sedated time" will just be a restorative time for him. Also, please pray that his heart will remain strong and safe and that his kidneys will "wake up" and be as strong as they ever have been. We would also really appreciate your prayers for us -- we are kind of running on empty today and this is kind of tough.

Thanks for being there as always.

Dialysis catheter failed, inserted new one

2010-11-28T15:49:00.001-05:00

Hi again,

Dialysis was started this morning and worked well for a little over one hour- they were able to remove about 140 cc of fluid from Greg (almost 5ounces) and then the dialysis catheter that was placed in his groin kinked inside of him somehow and would not work. Most of the day since then has been spent in repeated attempts to insert another catheter. They attempted multiple times before finally getting one in the right groin above the site where they had him attached to the heart/ lung bypass machine. They finally got to restart the dialysis about 20 minutes ago and so far, so good. Greg is extremely sedated due to the pain of his surgery and the extreme discomfort that this awful swelling is causing, along with the understandable anxiety of having to lay flat for so long while these attempts were made to get the catheter in. His lungs have fluid in them too and so it's very hard for him to breathe laying down.

Thank you for your prayers today-they've made a difference. Please pray that nothing will happen that will cause an interruption in his dialysis. He truly needs it right now.Also please pray that his kidneys would start working; that he would not develop pneumonia as a result of his inability to move/ breathe properly and of course that his heart would not show signs of rejection secondary to the interruption of anti-rejection meds.

I continue to think of and pray for his donor's family and would ask that you join me in that prayer. We are so grateful for their amazing gift and grieve for their loss.

Thanks for caring and praying!

Love,
Becky

Greg starting dialysis this morning - please pray

2010-11-28T09:23:00.001-05:00

Hi everyone,

Thank you so much for all of your encouragement and rejoicing over the past few days! We truly had a Thanksgiving miracle. Its still hard to wrap my mind around the fact that Greg has a new heart! A NEW HEART!! Good riddance old heart and all your issues... we are moving forward and not looking back!

As Becky has mentioned in recent blog posts there have been some complications over the past few days. His first day post-transplant was incredible, but since then he's really been struggling. Yesterday was his worst day so far. Horrible pain being the biggest issue. The pain is not only from the surgery site but also from the extreme bloating he is dealing with because his kidneys are not functioning properly. It has gotten to be so bad that they are starting dialysis today to get the extra fluid off of him before it starts to effect his other organs. The nurse just showed us the chest x-ray of Greg right before the transplant, right after the transplant, and this morning. The amount of fluid he has built up was staggering. And its obvious just looking at him - his joints and extremities are extremely swollen. Its interesting because it shows that his new heart is working well - his old heart couldn't pump the fluid to the extremities which is why his liver and abdomen held all of the fluid. His new heart is successfully pumping the fluid everywhere, which is great! The downside though is that Greg hurts everywhere.

The docs are hopeful that once they remove a lot of the extra fluid that Greg's kidneys will "wake up" and start working effectively. There's no indicator at this point that he's experiencing any sort of kidney failure. Kidney issues are actually one of the major complications of heart transplants so while we are surprised and disheartened by this turn of events, the doctors are hopeful that this too will pass in time. Not sure if it'll be days or weeks, but he will probably have full kidney function again.

So, please pray with us for the dialysis to go well! It has been scary for Greg realizing that he needs dialysis. Its one of those scary medical words you hope you'll never have to experience. Thankfully the nurses and doctors have been excellent at explaining everything and making Greg as peaceful as possible. As I type this he is sleeping and his nurse is finishing all the prep needed to get the dialysis machine to work.

Please pray:
For the dialysis to be effective
For Greg's kidneys to work at 100% capacity again
For relief from pain and confusion for Greg

We are continually praising God for the miracle of Greg's heart. I still can't believe how incredible it is!
Love,
Elise

Some bumps in the road

2010-11-27T16:59:00.002-05:00

Hi Everyone,

After an incredible day of EVERYTHING going so spendidly, we've hit a few bumps in the road that of course can be expected but are hard to go through nonetheless.

A total praise is that Greg's new heart is AWESOME!! We have heard from multiple people involved in the transplant process that is was "the perfect heart" and promises to be awesome for Greg. Unfortunately, he is now in the process of beginning high dose steroids and anti-rejection meds that have really unpleasant side effects. Yesterday, he suffered from severe shaking and tremors after the initial steroids and then later experienced some confusion, anxiety, and a host of other unpleasant symptoms. He is going to be on extremely high doses of steroids initially that will then be weaned down, but I THINK that we have about three months to get through before he is at a maintenance dose.

During the night last night, his temporary external pacemaker developed some problems, which also caused alot of disruption to his rest and discomfort. Fortunately, his new heart is beating SO beautifully at about 80 beats/ minute, but they had hoped to pace him at about 110 beats/ minute through tomorrow, in order to promote the function/ ?bonding of the new heart. The doctors all conferred and don't see this NOT working properly as a real problem. Seeing his new heart monitor tracing is a real thrill for me, every time I look at it. His heart had been SO sick and the conduction through it SO disturbed that looking at the monitor tracing always broke MY heart. It's hard to believe that the tracing under the name GREGORY BOROS on the monitor in the hall is really his!

Another issue that is being dealt with today is alot of extra fluid that hehas on board right now. As a result of the surgery and the fact that he TOTALLY enjoyed not having a fluid restriction yesterday after getting off the ventilator, he has about 5 extra liters of fluid on him today. They explained to me that they usually don't like to give transplant patients diuretics, since their own kidneys have to get used to the increased blood flow to them , which allows them to "auto-diurese". However, the doctor believes that even though Greg's kidneys are healthy, they are used to an incredibly HUGE amount of diuretics and so today, they have administered a moderate dose of Bumex (and ? Zaroxolyn) to him. Hopefully that will be effective.

Another concern is the fact that his right leg is numb below the knee. The surgeon explained that the catheter (which is very large in diameter) that allowed them to connect Greg to the heart/ lung bypass machine was inserted through his right groin. There is a nerve right there that gets alot of pressure put on it during surgery which can often cause these symptoms. They anticipate the symptoms being gone within one week hopefully and should not be of consequence unless unless he starts to lose the use/ mobility of his foot, which he has not.

He is also feeling overwhelmingly fatigued today and achy -- he described it as "having been beaten with a bat". That, along with the confusion about what's real and what's not and thoughts not feeling organized or clear are really troubling to him. It's a tough day today.

If you would pray for the concerns mentioned above, we would be SO grateful!

We are all doing fine. Elise continues to be incredibly faithful and strong - - able to console and comfort him when no one else can. She and I are taking turns being there with him pretty much all the time. He feels better when he knows that one of us are there and the nurses have been MOST understanding in allowing us to be present. We believe that he is getting incredibly good nursing and medical care!

Smitty just left to drive Tim and Nate back to their respective colleges and then will stay at home for tonight. We're unsure if he'll return to VA immediately, or spend a little time at home getting some work done before returning. In Greg's current condition, he (and the twins) hasn't been able to be in the room with Greg and therefore it makes sense to try and keep track of life. It's EXTREMELY difficult for the boys and Smitty to leave and if you'd please pray for them too, we'd be grateful. Tim and Nate have their first experience with college finals coming up and this added stress makes it very difficult to focus. Additionally, Tim is going to be transferring to PITT starting next semester and there is alot to handle with that move as well. Please keep praying for us!!

I can't begin to thank you all enough for the texts and emails of encouragement over recent days. They have been a real source of comfort. Just so you understand our communication "logistics" now, I am sending this from the hospital library to my sister, Linda, who is forwarding it out to all of you.

OK!! That's it for now. I'm headed back to give Elise a long -deserved break. I left today for the first time and got a shower and clean clothes (YAY!!!) and she's going to enjoy that same luxury and some fresh air.

Thanks for praying us through this -- we're more grateful than you know!

Love,
Becky

Update from Greg's mom

2010-11-27T11:23:00.001-05:00

Hi everyone! Just wanted you to have a final update of the day. He actually sat up in the chair for two hours! And he ate some clear liquids and crackers tonight. No nausea! At this moment, he has no oxygen on at all and he is 94 percent saturated. Still having a lot of trouble coughing mucous up. Very sore throat as a result. Also having some confusion sometimes-- related to medicine and anesthesia. The other concern would be fluids. He has quite a bit extra on board. If you would please pray for those things, I would be grateful. We are hoping on a good night! Talk to you tomorrow.

Love,

Becky

Evening update

2010-11-26T19:29:00.002-05:00

I just got an update from Tim Boros that I'd like to pass on to you. . .

Dr. Spear just visited Greg and told him that his cardiac output is excellent. In fact he claimed it's twice as much as his own. We aren't sure if that's quite true, but in any case it was cheering news.

Since the surgery Greg has had Swan Chest tubes in to drain blood from his upper chest cavity. Fortunately he's not really bleeding, so the tubes are coming out tomorrow.

Also he's been coughing up a lot of mucous and in a good bit of discomfort, but he's on percocet and drifting back to sleep. All in all things are going very well and we hope he'll get restful sleep tonight with his new healthy heart.

Late Afternoon update on Greg

2010-11-26T17:50:00.002-05:00

Hi!

Well your prayers continue to be answered directly. Greg was successfully taken off the ventilator this morning. He is breathing well on his own with only oxygen via nasal cannula. His chest tubes are draining only a moderate amount and it was predicted that he would have bleeding problems from this area. His new heart is pumping well and he is off most of the IV drips that were needed to support his blood pressure. He was given his first dose of MEGA steroids which was really hard on him...still tremoring now. And believe it or not, in one hour they will be getting him out of bed to eat his clear liquid dinner. Please pray for strength as he does this. I'll post again later tonight to let you know how it goes. Thank you again for praying!

Becky

More good news

2010-11-26T16:17:00.003-05:00

Greg's brother Tim texted this update a short while ago:

We just saw Greg for a longer period of time. . . his nurse literally said to him "We're gunna have to kick you out of here if you dont stop doing so good!! We take care of sick people, not great looking people with perfect hearts!!" He looks soooo good, and they just said he was off of fluid restriction. . . He's allowed to drink as much as he can handle. He's so, so, so much more comfortable now. God is good. Praise Jesus.

Greg is breathing on his own

2010-11-26T09:55:00.001-05:00

Greg just got extubated and is now breathing on his own. Cardiac function is very good!

7am update from Greg's mom

2010-11-26T09:53:00.002-05:00

Good morning! Greg has gotten thru the night well. We were all allowed to see him at 4am and he was completely sedated but looked better than we anticipated. Elise and I then went back at 5 and he opened his eyes immediately when he heard her voice. Since then we have been in and out a couple times. They are being kind to us and allowing us to stay there and comfort him. They tried to wean him off the ventilator a little while ago but his blood gases weren't good enough. This is a really anxious uncomfortable time for him. His heart function numbers are looking really good! Please keep praying for peace and comfort for him and strength for us. We are pretty exhausted and want to help him through this. Thank you for your love and prayers!

Things are going well

2010-11-26T07:25:00.002-05:00

Below are a couple of overnight texts from Greg's brother Tim. Praise God that everything went so well and please keep praying.

2:12am
surgeon just came up..... said weve got "an incredible heart" in greg. surgery went great. its all over now.... hes going to be under heavy anesthetic for 3 hrs. we can see him in an hour. its extremely rare but 2% of transplants have bleeding after that can lead to a need to operate further. they think thats even MORE highly unlikely w greg cause everything went so good, but theyre still going to be monitoring that as well as any irregular beats its all over, surgerys done. went so so great.

4:07am
just got to go in and see him! looks really really good. external pacemaker and tube doing breathing for him.me nate dad are gunna sleep now. his nurses were all so nice, professional. he looks really good man. scary w the tube, from now on only 2 ppl allowed in at once. short visits as frequent as we want, a but they need to keep a good eye on his vitals and just watch. critical that they watch. but they said hes doing very well.

Greg is out of the OR and doing well

2010-11-26T03:26:00.001-05:00

At 2am the surgeon came to the waiting room to tell us that the surgery was done! He said that Greg was doing great. They put him on some "booster" drugs to help his new heart because the heart traveled a long distance to get to Greg and needed a little "boost". We're not sure what that means really but the surgeon said that this happens sometimes. One of the OR nurses also visited us and told us that Greg's new heart is "beautiful" and that Greg did great. The surgeon, the nurse, and everyone who has seen this heart all rave that it is in amazing condition. We're so excited!

Greg is now in the CVICU and we're waiting for them to get him all situated before we can go see him. They are monitoring Greg for bleeding and stray heart beats - and if they develop into a problem Greg may need to go back to the OR. We are hopeful and praying that this will not be the case!

Greg will be under anesthesia for a big portion of today and possibly getting off the ventilator late today- it all depends on how he does.

We'll keep you posted,

Elise

GREG'S NEW HEART IS BEATING!!!

2010-11-26T01:45:00.001-05:00

Hello everyone!

We got some great news at 1am. Greg's new heart is in a BEATING ON ITS OWN!!! Praise God!! It'll be an hour or so until they get the bleeding controlled and have his chest closed back up. Greg is doing great and we cannot wait to see him and tell him that this long ordeal is finally over!

It is hard to wrap our minds around the fact that Greg is getting a new chance at life. What an amazing God we have that gave Greg a second heart.

Thanks for being here with us! We'll keep you updated as he comes out of the OR and heads into the ICU.

Love,

Elise

Greg is getting a new heart

2010-11-25T22:24:00.005-05:00

As I type this Greg is under anesthesia awaiting the imminent arrival of his new heart. The doctors believe it's perfect for him. But let me start at the beginning of the day and get you up to speed.

Early this morning while Greg was still asleep his doctors contacted his family to tell them that a heart had become available that they believed would be perfect for Greg. They decided to let him sleep a bit before waking him and beginning to prep him for surgery.

Throughout the day Greg took various medications and gave a lot of blood, and had his central line replaced, all standard pre-op procedures. The surgery which was thought to take place at 2:00 was moved back to 4:00 and then 6:00. The last big step was to give a final visual inspection of the donor heart. On paper it was believed to be perfect and at 6:45pm the doctors evaluated it and concluded it was perfect for Greg. At that time Greg was anesthetized. His brother Tim tells me that Greg was singing "Rock of Ages" as he fell asleep and that his family continued to sing it after he was under.

At this moment they are awaiting the arrival of the new heart. It should be any minute at which point the transplant will commence. Because of scar tissue from Greg's previous open heart surgeries this operation will be more complicated than normal and will take several hours. All should be done by early morning Friday.

Greg and Elise did great today and had a wonderful day. The family was all together and actually had a really pleasant day. Becky seems really thankful for how everything has proceeded. They have the best team of doctors and great nursing staff including at least one believer who prayed with them.

We should have word of how the surgery went in the morning.

Greg is not able to have visitors, but would love to continue to get cards. You can send them to:

Greg Boros

INOVA Fairfax Hospital

CTU Room 305

3300 Gallows Road

Falls Church, VA 22042.

Finally, I just got a text from Greg's brother saying the heart is in Northern Virginia, so it really is imminent.

Please continue to pray for Greg, Elise, and their families. Elise specifically asks that you pray that Greg won't be awake for long while intubated, nor frightened for whatever length he has to endure that. While intubated they hope the staff will allow them to be with him to calm and reassure him. In his previous open heart surgery that was a particularly horrific experience that he doesn't want to repeat.

Prayers Answered!

2010-11-18T10:57:00.001-05:00

Greg is doing SO much better than he was on Tuesday! In the last 24 hours he has lost over 6 liters of fluid!!! The diuretic combination is working so well and he was able to walk around the hallway a little bit yesterday. He's also breathing much easier and hasn't been using the oxygen (except at night). We're hoping that some more extra fluid comes off today - it makes such a difference in how he feels! The trick now is to get off the fluid but not take so much off that his cardiac function decreases. The next few days could be interesting as they try to find the right balance but we're just so grateful that he's doing so much better already! Thank you for praying for him - our prayers were answered!

Love,
Elise

Greg is fluid overloaded and struggling to breathe

2010-11-17T09:53:00.001-05:00

Greg's mom, Becky, sent an email update to a group of friends this morning that I decided to post on the blog. Yesterday was an extremely difficult day and her email explains what happened. I've added a short update at the bottom as well.

Here's Becky's email:

I'm on your "prayer doorstep" again. The past two days have been extremely difficult for Greg due to an almost 25 pound weight gain in the past week. Yesterday, his weight was up to 242# and he simply can't breathe. I've spoken to him at lunch time the past two days and he has been having difficulty even talking because he is so short of breath. He has been wearing oxygen continuously, but the "burden" of all this fluid in his abdomen is making him feel like he just can't get a breath. As I last explained, they now know that they have to keep an uncomfortable amount of fluid on him, for the good of his kidneys and other organs, but his heart status changes so quickly and often that it's difficult to stay on that fine line of what's best/ what's tolerable.As of last evening, the doctors have decided that they want to take 15# pounds off over one week. They believe that a slow adjustment to his fluid status is best so as to not place his kidneys in danger. They've adjusted his diuretics toward that goal and now Greg just has to survive these days of transition.

To make matters worse, he has been experiencing really severe headaches from one of the meds used to increase his cardiac output and as a result, they've had to stop that medication. I don't know how much of an effect that will have on the overall picture. Yesterday's nursing care sounded like it was about the worst that he has had during this admission and it came at a really tough time as well. Thankfully, a special nurse, Lia, came and offered reassurance at a necessary time.

Please pray for easy breathing today and for good cardiac output that will carry some of this fluid away. Please pray for peace, comfort and strength for both Greg and Elise... it's a tough, tough time. And if you'd pray for Smitty and me too I'd appreciate it -- it's so very hard to not be near him to offer comfort and to be completely helpless to "fix" anything. It's just another one of those times that I realize that we are complete powerless over anything that really matters in this life - we continue to trust God for Greg's preservation and for the perfect heart to hopefully come soon, but ultimately within His perfect timing.

With love and true appreciation,

Becky

Update from Elise:

We are hopeful that the Greg's excess fluid will be coming off of him soon. The doctors have restarted his booster diuretic which has been effective in the past. Greg will get his second dose this morning, so hopefully by early afternoon he'll have some relief from the fluid and be able to breathe easier. Today is the first time since he left the CCU on Friday that he hasn't put on 3-4lbs of water overnight. He's maintained his weight from yesterday - and we're praying that by tomorrow morning he'll be down a few pounds. As Becky mentioned, the doctors did discontinue the medication that was causing his terrible headaches. He's been on a strong pain killer since yesterday afternoon that is keeping the headaches in check until the drug is completely out of his system. Greg is still on oxygen continually and it makes a significant difference in his ability to breathe.

The care that Greg received yesterday was truly atrocious. I spent a significant portion of yesterday morning calling the heart transplant clinic and the nurses station on Greg's floor trying to get someone in the room to care for him. When I got to the hospital in the early afternoon I got to experience first hand how negligent his nurse was - and also had the chance to make it clear to her that it wasn't acceptable. Greg simply was in too much pain to be able to make phone calls or walk to the nurses station to complain to her superiors. We are so grateful for Lia, one of the nurses on the floor who saw the situation and kept checking in on Greg even though he wasn't her patient.

Greg had a pretty fitful night due to breathing issues but is now sleeping soundly. Hopefully this will continue!

One bright spot yesterday afternoon was a HUGE stack of cards and packages that Greg received. The 2 women who delivered the mail asked for Greg's autograph because they thought he must be a celebrity to get so much mail! He explained that no, he isn't a celebrity, he just has an incredible group of people behind him! It took about 3 hours to go through the mail. I read him the cards and opened the packages for him - and he really enjoyed it. Thank you for taking both of our minds off of the situation and for blessing us with a good ending to an awful day!

Love,

Elise

Week 5 Update

2010-11-15T16:31:00.001-05:00

Hey Everyone,

A lot has happened since I last updated the blog - and while stuff was happening I didn't feel up to updating. But I'll try to catch you guys up on what has happened recently with Greg.
* *scroll down for a list of praises and prayer requests**

Because he was feeling so horrible at the beginning of last week, the doctors scheduled another heart catherization on last Wednesday. They wanted to see if the medications that they had Greg on were actually improving his heart function. They also decided that they would use a Swan Ganz (a type of catheter which goes through the neck to the heart and lungs) catheter so that they could monitor Greg's heart and lung function over a few days. For this Greg needed to be moved from his bigger room on the 3rd floor to a room in the CCU where he could receive a higher degree of monitoring and care.

During Greg's heart catherization and the subsequent 2 day stay in the CCU, the doctors determined that the medications they had Greg on were not actually helping his heart. Probably the most important piece of information they learned is how much fluid Greg needs to have on him for his heart to have optimal function. Because of his prior catherizations, the doctors have been treating Greg under the assumption that the dryer Greg is (the less excess fluid he has accumulating in his body), the better his heart functions - this is why they had him on fluid restrictions and lots of diuretics. This certainly was the case before (you might remember the docs. getting over 40lbs of fluid off of Greg last spring and him feeling MUCH better afterward), but they found that as Greg's heart failure has worsened, his ability to tolerate being "dry" has decreased. Now his heart function severely decreases if he's too wet or too dry (which explains why Greg was doing so poorly over the last week or so despite being on extremely high diuretic doses). The doctors spent time finding the amount of fluid Greg's heart needs to be able to pump most effectively. Unfortunately the amount of fluid Greg needs to have on him makes it extremely difficult for him to move around and makes him very short of breath and tired.

The good news is that with the extra fluid all of Greg's organs are functioning much better. They didn't tell us this until afterward, but Greg's kidney and liver numbers were so bad last week that the transplant team doubted an anesthesiologist would be comfortable letting Greg go into surgery. Apparently his numbers have improved so much since they decreased his diuretics and increased the amount of fluid he's carrying that they believe an anesthesiologist would not hesitate to let Greg be operated on. This is a HUGE praise since Greg might need to be in surgery at any time! They also converted Greg from a blood thinner that he was taking orally to a continuous IV diuretic which will also make it much safer to operate on Greg.

All in all, we are in a much better position than we were in last week. Greg's heart is pumping more effectively, his organs are healthier, and he's safer to operate on! But all of the good results also came with the price of Greg having 2 very miserable, painful days in the CCU, and him being very uncomfortable now. Over the last few days Greg put on way too much fluid so the doctors are adjusting his medications again. There's a very fine line between too much and too little fluid for him - so its going to be a continual process of trying to keep him at the right spot.

Some praises from last week:
- Greg's nausea and extreme exhaustion have gone away since he was taken off of many of his medications
- The doctors have a much better understanding of how to help Greg's heart function as well as possible
- Greg had a really good visit with his parents and one of his brothers over the weekend and I had a great visit with one of my brothers. We really needed some outside emotional support and they came at the right time
- I have a new psychiatrist who is helping me adjust some of my medications so that I can better deal with the stress of this time
- Greg is back on the 3rd floor and in room 305 (the big one!)
- We continue to receive daily encouragement, financial help, emotional support, and so many other things we need through the mail each day. Thank you to every one of you who are going so far out of your way to love us and care for us - we are so blessed!

Prayer requests:
- That the doctors would be able to make Greg more comfortable. The extra fluid he has to keep on is really taking a toll on him. The difficulty he has breathing is especially hard to deal with. Please pray that they'd be able to keep him at a fluid level where he is able to walk around a little each day and to breathe more easily.
- For Greg's painful headaches to stop (they are especially bad when he wakes up in the morning)
- That the perfect heart would come soon.
- For peaceful sleep for both of us. We're both having all kinds of awful dreams each night and we're waking up feeling stressed and exhausted. Sleep has been especially difficult for Greg this week.
- For emotional and physical resilience as we begin Greg's 5th week in the hospital. We are both feeling so weary and... so many other things that I'm not sure I can even put into words Its just been a really, really long month and going into the holiday season with him in the hospital is tough in a lot of ways. We're trying to make the best of the situation but it is hard.

Thank you for sticking with us in this long waiting process - you are such an encouragement to us.

Love,
Elise

Update and Visiting Guidelines

2010-11-09T13:33:00.001-05:00

UPDATE

Things have really gone downhill since I last updated the blog. Most notably, Greg's heart failure symptoms have become significantly worse over the last week. He's also dealing with extreme nausea and fatigue. Multiple days in a row over the weekend and start of this week he didn't even have the energy to walk in the hallway, let alone go outside. Yesterday evening I was able to get a wheelchair and pushed him outside so he could get a breath of fresh air. He barely had the energy to get in and out of the wheelchair.

While he was feeling stir crazy earlier in his hospital stay, now he's just feeling weary. This is the start of his 4th full week in the hospital and let me tell you- no matter how nice the hospital is or how big the hospital room is, hospitals are not meant to be long-term living quarters. It is very hard on him emotionally to be there - and on top of it to feel so constantly sick and exhausted. I really can't adequately describe how down hill he's gone in the last week. He actually fell sound asleep during the Steelers game last night - and if you know Greg well, that's hard to believe.

The doctors are trying to tweak his medications to hopefully get rid of the nausea. We may have figured out one of the drugs that's making him feel sick so by tomorrow some changes will take place, hopefully for the better. They are also carefully watching the rest of Greg's organs and though they seem to be taxed by the heart failure, they are not showing any signs of permanent damage yet and we're praying this will continue to be the case.

Visiting Guidelines

Greg has decided that it would be best for him not to receive visitors at this point in his hospital stay. Like I said above he has absolutely no energy and is finding it extremely difficult to keep his thoughts straight and keep any sort of conversation going. By the time the doctors, psychiatrists, and nurses have all done their rounds each day he is completely wiped out emotionally and physically. Most of the time when I'm in the room with him he's resting or sleeping and I'm napping, reading, or working on something quietly. Its just too much for him to have active company.

Many dear friends have expressed a desire to come see Greg - and we so appreciate your love and support of him. Greg LOVES people - and if he was feeling any better visitors would be a huge encouragement to him! He's just at a point where he's too sick for it to be beneficial. We also have to worry about him catching any sort of sickness from anyone - especially since its flu season. Already visitors are limited to anyone who has a flu shot and has not had a cold or been taking care of anyone with a cold for a couple weeks. It would be such a shame to wait all this time for a heart and then for Greg to be fighting an infection, flu, cold, etc. and not be safe to operate on! We have had some family members (healthy, with flu shots) visit on the weekends, but even then he can only have them see him for short durations. Unfortunately, after surgery visitors will be even more limited for quite some time because he will be immune-suppressed. However, the hope is that one day in that not-too-far future Greg will be healthy again and be able to spend time with all the people he loves and everyone who has been so encouraging and so supportive of us!

If you are interested in visiting Greg, please email me first or speak with me on the phone first. If he's feeling up to a visitor and you meet the "guidelines" then we'd love to have you come (and know that we may have to cancel last minute because of his ever-changing condition). But its getting harder and harder for him when he has surprise visitors come - sometimes he's just not up to it (well, lots of times now). If I do ask you not to visit, please know that its not because we don't appreciate you but its because we need to put Greg's health first right now and since I'm the one who is closest to him and there the most, I'm the one who is in the position of making sure what he wants is what happens and that he gets the rest he needs.

How can you help?

The best thing that you can do for Greg right now is PRAY! Pray that his new heart comes soon. Pray that he'd have the energy to go outside. Pray that I would be able to stay positive and encouraging when I am with him. Pray for his terrible symptoms to lessen and for him to spend less time feeling so awfully sick. Pray that Greg would feel Jesus closer than he ever has before. Pray that the limited time he does have with family would be sweet and encouraging.

The second best thing you can do? Send cards!! I've been reading the cards to him each day (he was reading them himself but has been too tired to lately) and he enjoys laying on the cot with his eyes closed and listening to the jokes, messages, prayers, and well wishes. It truly is a source of strength - for both of us.

We are so grateful for the way you are walking this long road beside us. We love you.

Love,
Elise

Please Pray

2010-11-04T01:30:00.001-04:00

Hey everyone,

Its pretty late and I'm exhausted but I wanted to ask for prayers. Greg had a really tough night after a couple tough days.

Being in the hospital is getting harder for Greg. He's too sick to go home, but each day drags on and on for him - time has never passed so slowly it seems. Its tough because his body prevents him from having the freedom his mind wants. He's stir crazy, but absolutely exhausted at the same time. Most of all the hospital is starting to feel like a prison. Today he went to the hospital courtyard for 5-10 minutes with me and it was the first fresh air he'd had in 2 days. We're talking with the nurses about some possible options of them accompanying him outside occasionally so he can breathe deep and get fresh air. They can't monitor him if he's outside so he'll need to have a nurse with him to make sure he's safe. Thankfully the nurses are so great and they really care about Greg - they actually offered to come up with a way for him to go outside (not just in the courtyard but actually out front of the hospital), it never even occurred to us to ask!

Please pray:
- That Greg will be able to spend more time outside and that the nurses will be available to go with him.
- For Greg's nausea and headaches to go away (they are probably the side effect of one of his medications).
- For peace instead of anxiety and rest instead of restlessness.
- For me as I try to figure out how best to be here for Greg. Particularly that I'd come up with some sort of routine that would help me stay rested and enable me to be with Greg during the toughest times of the day.
- And as always, that his new heart would come soon! We can't wait to be on the other side of this and for him to be back home!

Praises:
- The nurses are fantastic and we love them. We are so blessed.
- Greg had a great spiritual conversation with a psychiatry student today! Its really great to see God using him to reach people even now.
- They are increasing the frequency at which Greg can get medicine to help with anxiety! This is going to make a huge difference!
- I was able to buy a cot to sleep on. Its now set up in Greg's hospital room so I have the option to stay over at night if I'm too tired to drive home (and without killing my back trying to sleep in a chair), and he has a great place to rest and take naps. He feels like the cot makes the room more homey and he finds the cot to be a lot more comfortable than his bed too. We are so grateful to those of you who made this possible!
- Greg received 68 cards in the hospital mail yesterday and more at our apartment! It was amazing!

Thank you for praying!

Love,
Elise

New Room Number

2010-11-01T15:32:00.001-04:00

Hello,

We continue to wait on a new heart for Greg and are getting through
day by day. Being stuck in the hospital is difficult for Greg and
with the indefinite time-line he feels like he's never going to get
out! I'll admit it feels like that to me too.

Greg has not been feeling well over the past few days. He's extremely
fatigued and uncomfortable. Although the doctors adjusted his
medications a bit before the weekend they don't seem to be making a
big difference. He did lose some of the water weight but its already
starting to come back. He was told this morning that even if they
were able to get all of the water off, Greg still wouldn't be able to
leave the hospital. While his heart does OK when he's in bed or
sitting still, even walking slowly taxes it too much. And if they
took him off the extremely high doses of diuretics he can get through
the IV and put him back on oral medications at home, he would just
balloon up.

A highlight of the weekend was that Greg was able to switch to a
bigger hospital room - its the biggest one in the unit he's in! It
has a separate sitting room attached to it so he has more places to
sit and more space to move around in. This has been a huge blessing
and we are really grateful that the nurses were so sweet to switch
him. Since the room is more isolated than the regular rooms, it is
often used post-transplant. Maybe Greg will be back in here with his
new heart! My sister and brother-in-law also came to visit and it was
so nice to have some company - I am very thankful for them!

Here is the updated address with his new room #:

Greg Boros
INOVA Fairfax Hospital
CTU - Room 305
3300 Gallows Road
Falls Church, VA 22042

Thanks for your continued encouragement and prayers!

Love,
Elise

address correction

2010-10-27T09:44:00.001-04:00

Correction:
Greg Boros
INOVA Fairfax Hospital
CTU - Room 314
3300 Gallows Road
Falls Church, VA 22042

In hospital and moving up the list

2010-10-26T19:28:00.001-04:00

Hello everyone,

We found out yesterday that Greg is officially a 1A on the heart transplant list. This means that he's at the top - not necessarily #1, but in the highest category. This also means that he's too sick to leave the hospital. None of the diuretics are working on him - his heart simply isn't functioning well enough to pump the blood to his kidneys so the diuretics are working on dry kidneys while he's holding lots of fluid in his heart. They also are unable to keep his potassium levels high enough, or even steady, despite the massive amounts of potassium he's getting in his IV and by mouth each day. The doctors are trying a new medication to see if it will help his cardiac output but again they aren't hopeful it'll make a significant difference. At this point it looks like Greg will be staying in the hospital until he receives his new heart.

Two weeks from yesterday they will reevaluate Greg (if he hasn't been transplanted yet) to see if he still qualifies as a 1A. They will continue doing this every two weeks until he gets his new heart. We are at the point where they don't have any other things to try to keep his heart functioning- only a new heart will do. We are hoping and praying that he gets his new heart before he starts feeling even worse and before his heart starts functioning even less.

Please Pray:
For a new heart!!
That the new medication will increase Greg's heart function.
For Greg's fluid level to decrease and his potassium level to increase.
For both of us emotionally. Greg has been in the hospital for over 1 week already and he could be there for a significant amount of time. Its a tough place to be and we are trying to stay upbeat and really get him "settled in" but he misses being home (and fresh air and freedom... etc.) and I miss him being home!
That I would stay healthy. I felt pretty sick over the weekend but thankfully Greg's parents were here to be with Greg so I could get some rest. Now that they are home I'm trying to balance getting enough rest, spending time with Greg, being at the hospital for when the doctors are there, and taking care of stuff at home (including our super lonely kitty!). Its exhausting and I need to stay healthy so that I can take care of Greg before and after the transplant.

Praises:
Greg is sleeping better at night!
I am adjusting better to being home with him in the hospital. Its hard to sleep because I'm anxiously awaiting any call from the hospital, but I'm doing much better at this than I had been.
Greg had a good weekend with his parents and even dropped a little water weight (he's back up again now) over the weekend so he felt a little better.

I'll keep you updated as things progress over the next two weeks.

Greg has been so encouraged by the cards we've received in the mail this week! They are a bright spot in his pretty dull and difficult days. If you'd like to send a card to Greg, you can send it to or home address or directly to his hospital room:

Greg Boros
INOVA Fairfax Hospital
CTU - Room 314
300 Gallows Road
Falls Church, VA 22042

Love,
Elise

P.S. Just a quick note about flowers/plants: Greg can't be around any flowers or plants post- transplant because of risk of infection from bacteria in the water and soil. If you are interested in sending flowers or plants, please keep this in mind!

Things are not improving

2010-10-22T13:47:00.000-04:00

Another quick update:

Things have not gone well since Greg came to the hospital on Monday. He's actually put on more fluid and they can't seem to get it off of him. The doctors explained that the diuretics squeeze fluid out at the kidneys - but his kidneys are dry as a bone. The problem is that his heart is not able to pump enough blood to the kidneys for the diuretics to work. Between not being able to get fluid off of him, having trouble finding an ant-iarrhythmic medication that will work and not cause a dangerous reaction, and the recent heart catherization results, and everything else that has happened in the last 2 months, it is clear that Greg's heart is degenerating faster and faster.

As of last night they have decided to bump Greg up to a 1A status on the transplant list. The regional transplant board will have to approve the new status, but the doctors think that'll happen very easily. They are all really concerned about Greg and don't want to be in a "too late" situation. Once he's officially a 1A he should be getting heart offers and if a good one comes his way, they will take it. We could be looking at a transplant within a couple weeks - or months- even days really is possible. There are risks of getting a transplant but at this point the risk of Greg's own heart in his chest is so much greater than a transplanted heart.

We just heard this news this morning and it is tough. We are very scared. We know that a transplant is a blessing and a miracle, yet it is terrifying at the same time.

At this point we don't know when Greg will be leaving the hospital, or if he'll be able to before the transplant. They just added a PICC line this morning to better control his potassium and he needs to lose 20 lbs of water weight before he can go home. He wants to go home so badly, and I miss having him home so much! But we are trying to be patient, to trust the doctors, and ultimately and most importantly to trust that Jesus is taking care of us - even when it doesn't look that way on the surface.

Greg's parents are coming down for the weekend - and we are especially grateful to have family coming after this emotional morning.

PLEASE PRAY:
- for the diuretics to work
- for Greg to be able to come home
- for us both to get sleep
- for me at night - I'm really having a hard time emotionally when I get home late leaving Greg in the hospital
- for a successful transplant
- for us to be able to live life again! I looked through some pictures from last fall this morning and it seems like a different lifetime ago that we could do things as simple as carve a pumpkin or go to the Natural History Museum. Greg has been sick for so long and we really want to make sweet memories with each other, our friends, and our families again.
- that we would feel Jesus' presence with us at every moment and know that we are never outside of his care.

Love,
Elise

Still in Hospital

2010-10-20T12:57:00.001-04:00

Just a quick update:

Greg is still in the hospital. The diuretics don't seem to be working well, in fact they've only been able to get 1/2 lb off of him since Monday. They're also having some difficulty finding an anti-arrhythmic that will work for him. The one that they initially tried seemed to be having a negative effect on their ability to get fluid off of him. Tomorrow they will start another drug, one that is very commonly used post-transplant. This one has very bad side effects when used long-term. The hope is that they will be able to take him off of it before the side effects begin to cause problems. He will be very closely monitored while on this medication. At this point it looks like Greg will be in the hospital until Friday at the earliest. We're hoping and praying that he'll be able to come home soon, but the doctors really want to try to get the fluid under control or at the very least figure out why it isn't responding and what the next steps are. Please pray for good sleep for both of us. Its been a difficult week.

Love,
Elise

Back to the Hospital

2010-10-18T14:17:00.001-04:00

Hello,

Greg had an appointment this morning and the doctors decided to admit him to the hospital. His weight has spiked over the past week and the excess water is effecting him to the point where he can barely think straight, he is utterly exhausted, and he's having trouble breathing. He will be in the hospital until at least Wednesday so that they can use IV diuretics to take off the excess water and so that they can start him on the new medication I mentioned in my last post. It does appear that his heart is going in and out of atrial flutter - hopefully the new medication will fix that.

Greg is actually really glad to be going to the hospital this time - which shows how truly miserable he feels! We're at home right now waiting for the call from the hospital that there is a bed open for him. Greg fell asleep immediately after we got home from the appointment this morning and I'm hoping he'll continue getting good rest at the hospital too. Hopefully by the end of the week he'll be able to come home with a lot less water on board and feeling much better! Please pray that this medication would be really effective at preventing arrhythmias in Greg's heart. If the doctors cannot get his arrhythmias controlled they are going to need to put Greg on the "fast track" to transplant - and they, and we, don't want that. Also please pray that Greg and I would have a supernatural level of peace that is above our circumstances. To start the new medication they must take Greg off of one that has really been our safety blanket for nearly 2 years and his heart seems to be so dependent on it to be safe. We trust that the doctors know what they are doing but its difficult to have that sense of security taken away.

When we got home from the appointment this morning I checked the mail and we had a flood of cards from so many of you reminding us of God's love and that you care for and are praying for us. I can't even begin to express how much of a boost that was for us! We were feeling really down about having to go back to the hospital again and hearing more difficult news, and then to get such encouragement in the mail was awesome. Thank you so much. Every card we receive feels like a much-needed hug!

Love,
Elise

End of week update

2010-10-15T17:12:00.001-04:00

Hello everyone!

Well, after Monday's cardioversion going so well we were expecting Greg to feel great, but unfortunately that didn't happen. On Tuesday he slept for 16 hours straight and then felt completely exhausted when he woke up and again on Wednesday. He also gained nearly 5lbs of water weight in two days so we were concerned that he might've gone back into atrial fibrillation. However, we did get great news Wednesday that Greg's heart is still in a normal rhythm and that his potassium level was higher than when he'd left the hospital Monday! The doctors thought that Greg might've caught one of the many stomach bugs going around and that it was probably wiping him out.

This morning he had an appointment with the arrhythmia doctors. During the appointment we found out the Greg had some atrial flutter on Tuesday which is probably a more accurate explanation for why he was so exhausted. Atrial flutter is a less serious atrial arrhythmia than atrial fibrillation, though it can also cause blood clots and strokes. Greg already developed atrial flutter once last spring and they performed an atrial ablation (where they cauterize the neural pathway that is causing the arrhythmia) that fixed it. This atrial flutter could be caused by the same pathway or it could be caused from something else. If he continues to experience atrial flutter they will do another atrial ablation on him to stop it. We also learned that once someone develops atrial fibrillation they are extremely likely to go back into it, even after a successful cardioversion because it isn't a permanent fix. It is one more symptom of Greg's heart getting so stretched out with fluid. The doctors are going to be watching Greg very carefully for any signs (increased weight gain, fatigue, shortness of breath) that he is bath in atrial fib. This is kind of difficult because those are the symptoms he has from heart failure in general so its not easy to distinguish between them. But the doctors will be seeing him very often (including this Monday) to watch for any changes. If he does go back into atrial fib they will perform another cardioversion. The doctor explained that they will treat any atrial arrhythmias very aggressively because Greg's heart depends on his right atrium for the majority of its function since his right ventricle is in such bad shape.

Finally, we learned that they are going to be adjusting Greg's medications. He needs to be on a medication that helps prevent atrial arrhythmias as well as ventricular arrhythmias. The medication they will use is really potent and Greg will need to be admitted to the hospital for a few days for monitoring when they put him on it. At this point the plan is to wait until Greg is being admitted for other reasons (like low potassium, a heart catherization, or ablation) to minimize his trips to the hospital (which is so considerate of the doctors!) but again it'll depend on how things go.

So, this week didn't turn out as great as we had hoped, but we're learning a lot about atrial arrhythmias and we feel confident that Greg is getting really good care from his doctors. We are so blessed to live close to a hospital that is able to care for him with such excellence! God sure knew what he was doing when he brought us to Northern Virginia!

Thank you for continuing to pray for us, and for the many encouraging notes and cards we received this week! We are both really exhausted, emotionally as well as physically, from this journey and its a boost the know that you all care so much for us. I have been feeling particularly drained lately and appreciate the encouragement I've received more than I can express on this blog! I'm hoping that nothing very exciting will happen next week and that you won't be hearing from me (no news is good news!), but I will keep you posted if anything major happens.

Love,
Elise

Cardioversion successful and Greg's talk available online!

2010-10-11T20:29:00.001-04:00

Hey Everyone,

Greg's cardioversion was a huge success today! The doctor didn't find any blood clots during the TEE so they proceeded directly to the cardioversion. Greg's heart converted from atrial fibrillation to a normal (safe!) rhythm on the third attempt and it stayed that way! This is a HUGE answer to prayer!!! The doctors anticipate that Greg's heart failure symptoms will decrease, his body will respond better to the diuretics, and his heart function will degenerate slower! And if his heart stays in the normal rhythm (there is a possibility it will convert back to atrial fibrillation) they will have more time to wait for the perfect heart! We are thrilled with the results!

Greg will go to the hospital on Wednesday for an EKG (so they can make sure his heart hasn't converted back to atrial fibrillation) and blood tests to check his potassium level and to monitor the amount of blood thinners he is taking. His potassium level was really low today but they allowed him to come home anyway (yay!) and we are hoping that it will increase over the next two days (they have stopped the potassium-leaching diuretics for now) so that he can continue to stay out of the hospital. Thank you so very much for praying for us today! Our prayers were answered!

I also wanted to let you know that the message Greg gave at Cru this past Thursday is now posted on the Mason Cru website (www.masoncru.com - click on the media link). He spoke about suffering- told through the lens of what Greg has experienced and learned this year while waiting for his transplant. You can also access it directly at http://www.masoncru.com/Talks/Cru_Talk_10.7.10.mp3. I just listened to it for the first time (I didn't go to Cru because I felt like it would be too emotional for me to hear him speak about the last year) and it was incredible.

Thank you again for keeping us in your prayers. We'll let you know how things go this week.

Love,
Elise

Cardioversion scheduled for Monday

2010-10-10T21:50:00.001-04:00

Hi everyone!

Just a quick update asking for your prayers for tomorrow. Greg's doctors decided that they need to do the cardioversion as soon as possible instead of waiting a couple of weeks. Greg hasn't been responding to the diuretics and they think that the atrial fibrillation is making them less effective. On Friday we were told that the cardioversion is scheduled for tomorrow (Monday) and Greg was put on an aggressive diuretic regimen over the weekend to try to get some of the fluid off. The more excess fluid he is retaining the less likely the cardioversion will effectively get his heart out of atrial fibrillation and into a normal rhythm.

Greg did lose over 6 lbs this weekend (a HUGE answer to prayer) and we're hopeful that he'll be below the 210lb cut off tomorrow morning. If not, they'll admit him to the hospital so that he can get IV diuretics for a few days and then do the cardioversion once his weight is below 210lb. At this point it looks like he will be below 210lb tomorrow. If so, we are supposed to arrive at the hospital at 1pm. I'm not sure what time they'll actually be doing the TEE (to check for blood clots in his heart before doing the cardioversion) and cardioversion but we would both appreciate your prayers tomorrow afternoon!

I'll try to keep you posted as things progress this week. Thanks for praying!

Love,
Elise

Greg is home, and what's coming next

2010-09-30T11:15:00.001-04:00

Hello!

Greg was discharged from the hospital yesterday afternoon and we are thrilled that he's home! Before leaving we had the opportunity to discuss his case with Dr. Desai (the head of the heart transplant team) and learned a lot of valuable information. From Monday - Wednesday the doctors realized that it is not going to be possible to keep Greg at a consistently safe potassium level. Since the only diuretic that is effective on him wastes a lot of potassium, they don't have many options. Even with the picc line and the high doses he was receiving in the hospital, his potassium level wouldn't stay up. They decided that it would be best to try to maintain him at home with high doses of oral potassium pills since they weren't having much success in the hospital - and we heartily agreed! So Greg actually came home with his potassium at the same level as it was when he went in to the hospital Monday. He goes back tomorrow for a blood test to make sure his potassium hasn't continued dropping and then on Tuesday to reevaluate how he's doing.

We also learned that the doctors think Greg's atrial fibrillation has been going on for a while - that he's been having bursts of it (they've actually seen this on his device for months) that kept increasing to the point where he's been in a. fib. constantly since August 1st. This explains why Greg's heart failure symptoms were so variable and hard to predict - and why it took so long for the docs to realize what the problem was. It is not uncommon for someone to develop a. fib. later in life and most people can live an active life while dealing with it. The problem in Greg's case is that his heart depends heavily on his atria to get his blood pumped to the rest of his body - this is because his right ventricle is so blown out that it is ineffective at pumping. But instead of having a good squeeze in his right atrium that helps force blood to and through the right ventricle, his right atrium is quivering (the doc. said to picture of bag of wriggly worms) at an average of 300bpm and is not giving that big pump that his heart needs. So this makes his heart failure symptoms worse, increases the rate of degeneration of his heart, and if left unchecked would result in his other organs failing. Not a pretty picture.

Because it is so serious the first priority is to try to stop the a. fib. We have to wait 1 month before they can do the cardioversion so that the blood thinners have time to get rid of any existing clots and prevent any more from developing (due to him being in a fib for so long). Its too risky to do a cardioversion without waiting for the whole month. Dr. Desai isn't incredibly hopefull that they'll be able to get Greg out of a. fib. He actually said that Greg developing a. fib. is a landmark on the way to transplant - a sign that his condition is getting significantly worse. There are many tactics that they can try to stop the a. fib. and we're hopeful (more so than Dr. Desai seems to be) that they will be effective and buy us more time to wait for the perfect heart. However, if they can't stop the a. fib. we are going to start moving a lot quicker towards transplant and they will accept an o.k. heart instead of waiting for a perfect heart because the longer he's in a. fib. the shorter amount of time they have to transplant him before he's too sick and its too late.

Greg and I are really hoping and praying that they will be able to stop the a. fib. and put off transplant. Not only do we want to wait for the perfect heart but we also just want to wait as long as possible. Actually getting the transplant and all of the factors that come with it are terrifying and we hope to put if off as long as we can. The doctors agree with us, but are basically saying that we're getting closer to the point where the benefits of the transplant outweigh the risks of the transplant. We know that eventually that's where we're headed - its just scary. If you pray for us, please pray that we would trust that God has the perfect time chosen and that he is in control. It feels like this thing keeps spiraling out of control but we know that its not true - the hard part is trusting. Please pray also that we would trust in God's goodness - and for the a. fib. to stop!

Thank you so much for being there for us,
Elise

In the hospital

2010-09-29T10:26:00.001-04:00

Hello Everyone,

Just as the doctors predicted Greg was admitted to the hospital Monday afternoon because his potassium level was too low. They've been having problems getting his potassium up while keeping his heart failure under control. He's also still in atrial fibrillation - averaging 300 bpm in his atria but they can't address that issue until his potassium and fluid are stabilized. Its Wednesday morning right now and we're waiting for the doctor to do his rounds and hopefully let us know of a plan that will get Greg out of the hospital! Thankfully we had the date wrong for when he's speaking at Cru - he's actually scheduled to speak NEXT Thursday (Oct. 7) so hopefully this hospital stay won't interfere! We'll let you know if we find out any significant information today.

Thanks for praying,
Elise

Update on Greg

2010-09-24T00:57:00.001-04:00

Hello everyone!

The last few weeks have been pretty eventful with Greg's health and we wanted to catch you up and ask you to pray for us.

Over the past month and a half Greg's body has become increasingly less responsive to the diuretics that the doctors are using to control his heart failure. As his weight has crept up due to the increased amount of water he's retaining, his symptoms have also increased. There is a diuretic that is very effective at keeping the water off of Greg but the doctors have been very hesitant to use it because it causes him to lose potassium - which increases his risk of arrhythmias (and has resulted in him staying overnight in the hospital in the past).

A week and a half ago during Greg's visit to the heart transplant clinic, the doctors realized that Greg has been in constant atrial fibrillation since the beginning of August (they detected this by downloading information off of his ICD/pacemaker). Atrial fibrillation is an arrhythmia problem in which the atria and beating so fast that they are not effective at pumping blood into the ventricles. This can cause blood to pool in the heart and eventually lead to blood clots, putting the patient at risk of stroke. With Greg's atrial fibrillation going undetected for so long and his heart failure being severe, Greg is at a high risk of having a stroke. The doctors immediately decided to schedule a heart catheterization for today so that they could gather more information on Greg's current heart function and determine how to proceed. At this point the doctors are unsure if Greg developed atrial fibrillation (much like he had developed atrial flutter in March 2009) due to ARVD and the progressive nature of the disease which then caused him to retain fluid or if Greg was retaining more fluid which caused the atrial fibrillation. These processes are very complicated and Greg's heart has so many different issues that there could be a variety of factors involved.

During today's heart catheterization, the doctors found that Greg's heart failure is very severe at this point - almost identical to what it was last November-December when he was first diagnosed and before they began to treat him. Again, this is evidence that his ARVD is progressing because Greg is being extensively treated for heart failure and it is becoming increasingly ineffective. His heart is in such bad shape that they decided they cannot allow him to continue to carry so much fluid and are going to aggresively diurese him again to remove the 17 or so pounds of fluid that he is currently carrying. Greg is really looking forward to getting the extra fluid off - he has been having a lot of trouble breathing (especially at night and hasn't been able to sleep in bed because its so flat that he ends up gasping for breath), his exercise tolerance has decreased dramatically, his appetite nearly disappeared, and his energy really bottomed out. The past two weeks have been almost identical to last fall and they have been awful for him. The doctors will be using the diuretic that is effective at removing water but also removes potassium because it is the only diuretic that he can take from home that will work on him. Unfortunately this probably means he will spend at least one night in the hospital this or next week so that his potassium levels can be brought back into a safe zone - though we are praying that he will be able to stay at home! Staying in the hospital is always a bummer, but it would be worth it to get the water off and prevent more arrhythmias!

Greg started a blood thinner tonight that will hopefully prevent blood clots from forming. It is a tricky drug to administer and Greg will have to frequently have blood drawn to make sure he's at a safe level where he won't develop clots but also won't be at risk of complications from bleeding. Once Greg is back down to a "dry weight" at which his heart can function properly (and hopefully his symptoms are significantly lessened), the doctors will address the atrial fibrillation. First they will perform a special echocardiogram to make sure that there are no blood clots sitting in his heart. Then they will use his defibrillator to attempt to shock his heart back into a safe rhythm. If this isn't successful they will begin to explore different medications that can help with atrial arrhythmias. The doctors told us that even if the atrial fibrillation is fixed it could only be temporary and they will be constantly looking for any signs that it has returned. Unfortunately this is something that one would expect to see as a heart degenerates. It isn't what we hoped for, but it is one of the complications that can happen in a situation like Greg's.

This next week will be pretty full with blood tests and appointments to make sure Greg is safe and doesn't need to be admitted to the hospital for potassium or IV diuretics, and it looks like we'll be spending more time at the hospital than we have in a while. This is disappointing (the semester is in full swing now and we are so glad to be on campus doing ministry) but we are grateful that they finally understand why Greg's symptoms have gotten so much worse over the past month and we are hopeful that they will be able to use the information gained today to get things under control.

At this point Greg will continue to be a 1B exception on the heart transplant list. He is still not at the top of the list and may not be for quite a few months. There is such a huge need for organ transplants throughout the country and there are never enough for all of the people who need them. So we're still waiting, and we're praying that we'll be able to put off the transplant for a long time (transplant is a huge ordeal to go through and is a very scary thing) - though with Greg's condition worsening it feels unlikely sometimes.

Greg is scheduled to speak at the large-group Cru meeting this coming Thursday and he is really looking forward to the opportunity. The doctors were wonderful about scheduling appointments to make it less likely that Greg would be admitted to the hospital on Thursday but that is a possibility depending on how the week goes. Please pray with us that Greg will be healthy enough to not be admitted and that he'll be able to speak at Cru - it is something that he is very passionate about (and gifted in!) and it would be really encouraging to him. He's actually planning to share his story and what he's learned this year about Jesus being with us when we suffer.

On a more personal note, we continue to grow in our ability to handle everything that's being thrown at us. This year has been so overwhelming and so difficult, yet somehow Jesus has sustained us day-by-day and minute-by-minute. We constantly fight depression and despair and the lack of hope caused by disappointment after disappointment. Yet looking back to when the heart transplant "chapter" began, we can see how we've grown emotionally and spiritually over the past 8 months - though there is so far to go and each new issue with Greg's health brings new struggles. We would really appreciate your prayers for us - that we would have strength and hope, and that we would really know and believe deep, deep down that Jesus will never leave us or forsake us (Hebrews 13:5). Thank you so much for your continued prayers and support on our behalf.

Love,
Elise

Back Home

2010-07-08T10:20:00.001-04:00

Hello!

Thank you so much for all of your prayers and the encouraging words that you sent us! We arrived back home around 6pm yesterday (Wednesday) evening and were so glad to be back. Greg was dealing with some pain at the site of the catheter (they inserted it in his neck this time) especially when moving around and was exhausted so we took it easy and went to bed early last night.

Greg ended up receiving seven bags of IV potassium supplements during his stay which increased the level of potassium in his blood work to a much safer level. They removed the PICC line (an IV that travels from the upper arm to the superior vena cava so that potent medications are distributed in the blood quickly) through which they were administering the potassium which is great because there was a chance he'd come home with it in and have restricted activity.

The heart catheterization was very informative. It showed that Greg's pressures are ok and that they have not gotten significantly worse since April (his last heart cath.). Greg's heart output was low, but the doctors think it is due to one of the booster diuretics he is taking. The booster is also probably the cause of such significant potassium loss. With this new information the doctors made changes to Greg's diuretics that will hopefully increase cardiac output and maintain safe potassium levels. We go to the hospital on Friday morning for a blood test to make sure Greg's potassium level is staying high.

While in the hospital we were given the results of the specialized echocardiogram that was done at Johns Hopkins last month. According to the echo, Greg has right ventricular dysplasia that is consistent with what doctors see in people with ARVD (arrhythmogenic right ventricular dysplasia). This doesn't change much about the course of treatment for Greg but its one more piece in the puzzle of determining whether or not Greg does in fact have ARVD. We may be going up to Johns Hopkins again to have a cardiac MRI performed on Greg. In the past this has been impossible because of Greg's defibrillator/pacemaker but Hopkins has found a way to safely perform MRI's on patients with cardiac implants. Not only would this help in the diagnoses of ARVD but it would also help determine how much Greg's heart failure is progressing.

Overall, the doctors feel that Greg is fairly stable right now. His heart failure has slowly gotten worse since it was discovered, but the treatment regimen he is on seems to be preventing is from accelerating dangerously. They will continue to watch him very closely to make sure they know exactly how fast its progressing and do everything they can to slow it down. We're really thankful that the doctors found and treated Greg's low potassium before he developed any serious ventricular arrhythmias.

Last night we were both struck by how we had gone into "emergency mode" and just got through everything that happened without really processing it. We are definitely learning to take these types of hospital stays in stride- since they are part of waiting for a transplant, and we'll probably have many more of them- which is helpful and shows a lot of God's grace in our lives. But as we were reflecting on it last night we were feeling the strain of living a life where you can be called into the hospital at a moments notice for a couple of pretty uncomfortable procedures. And we were really fortunate because if Greg had been doing worse than he was, he would have had to stay indefinitely. I guess what I'm trying to say is that the hospital stay went as well as we could have hoped, but it still took a toll on us emotionally. Which is part of the reason we are so thankful for your prayers! We continue to struggle in dealing with waiting for a transplant in so many ways and having your prayers, support, encouragement, etc. is an incredible blessing that really does carry us through. Thank you for caring and for being there for us. We appreciate you.

Love,
Greg and Elise

Greg is in the hospital

2010-07-07T10:25:00.001-04:00

Hello!

Yesterday was a pretty crazy day for Greg. We arrived at the hospital around 9am for his bi-weekly heart transplant clinic appointment. Every time Greg goes they draw blood to check a lot of numbers (such as electrolytes, liver function, etc.) so see how he's really doing (just looking at him or examining him from the outside doesn't give very clear information). Greg also needed to have two samples of blood taken for various medical trials that he's agreed to participate in- they will hopefully help future heart failure patients to experience less organ-rejection and to diagnose ARVD easier. Because of hospital protocols, it took a few extra hours to get all the blood drawn and we finished barely in time to grab something to eat at the heart healthy cafe upstairs before going to the transplant support group.

The support group was very informative but overwhelming. The topic was medications and doctors visits post-transplant, and included a lot of information on living with immuno-suppression. We have lots to remember and process from that time.
As we got home and were unlocking the door to our apartment, we received a phone call from the heart clinic. They had the numbers back from Greg's blood test and his potassium level was dangerously low. Because low potassium can contribute to dangerous arrhythmia's (and Greg's ventricular tachycardia has been more frequent lately) they wanted to admit him to the hospital overnight so that he could have IV potassium. The doctors also decided it was best to have a heart catheterization performed on Wednesday (today). Greg was due to have one some time this month, and they decided that while he was in the hospital they should go ahead with it. The heart cath. is the best way to measure his heart function (how much blood is going out and in, how much pressure is building up in his lungs, etc.) and to determine how his heart failure has progressed since April (which is when he had his last heart cath.).

Its now Wednesday morning and Greg has had 4 IV bags of Potassium so far and will receive 2 more this morning. Greg won't be allowed to go home until the potassium level in his blood is safe, and we're really hoping that these 6 doses will be enough. The heart catheterization is scheduled for noon.

Please pray for Greg. Because he's had the procedure so many times, he has become less sensitive to some of the anesthesia they use during the cath. and is therefore fully awake during the procedure. While it isn't very painful, it is scary and extremely uncomfortable for him. Please pray that they'll be able to play the Christian music station for him (he says that's always calming when they can find it on the radio- he just focuses on the songs during the procedure and it helps him relax) and that the surgeon would do a good, quick, and safe job. Please also pray for Greg to get some good rest while we're here. He feels stir-crazy and really wishes that we were home where he could do his laps, swim in the pool to cool off, etc. but if he can sleep he might be able to catch up on some much needed rest!

Another thing that happened over the past few days is that we were rear-ended while driving on I-70E (a major road that connects to the DC beltway). Our car has a bunch of scrapes on the bumper but no other visible problems. However this happened before (our first week after moving to Northern Virginia!) and there was substantial damage that wasn't visible from the outside. I haven't had a chance to call insurance yet but we did get a police report on the accident so we know that we'll be covered in case things are worse than they look. Please pray that I (Elise) would be able to balance the things I need to do and prioritize them well. Its easy to run myself into the ground when Greg's in the hospital and I'm trying to figure out a way to balance being with and taking care of him, checking on our cat, etc. Also please pray for "Christy" (not her real name) who rear ended us. She's going through a difficult time right now and is a single mother who is having a hard time making ends meet. Our hearts really broke for her and I've been thinking and praying for her a lot since the accident.

Thanks for your continued prayers on our behalf. We'll let you know what we find out from the heart catheterization as soon as we're able.

With love and gratitude,
Greg and Elise

Appointment at Johns Hopkins

2010-06-08T16:44:00.001-04:00

Hello everyone!

We wanted to update you on Greg's condition and tell you about the appointment that Greg had at Johns Hopkins. Sometimes its difficult to communicate the changes in Greg's condition or the steps that the doctors are taking because, just like with most other diseases, the transplant "world" seems to have its own language and way of doing things. Therefore, this post is going to be our best attempt at catching you up on Greg's health!

Yesterday we went to Johns Hopkins Hospital in Baltimore, MD for an appointment with Dr. Russell who is in charge of the transplant program. The main purpose of this appointment was to get a second opinion and to have Dr. Russell help Greg's doctors decide on the next steps to take while awaiting the transplant. This was our second time traveling to Johns Hopkins- we first went there in April to meet with Dr. Calkins who is the doctor who is in charge of the Arrhythmogenic Right Ventricular Dysplasia (ARVD) program. As we mentioned in an earlier post, Greg's doctors at the INOVA hospital (our home hospital) had come to the conclusion that ARVD was the most likely cause for Greg's heart issues. During our first appointment at Hopkins, we met with a genetic counselor and they took a sample of Greg's blood so they could perform genetic testing.

We've been anxiously awaiting the test results for the past few months and finally got them yesterday. Greg's blood came back negative for ARVD. However, this doesn't mean that Greg does not have ARVD. Currently, geneticists have only isolated 5 genes that are linked to ARVD. While Greg does not have a mutation of any of these 5 genes, there could be other genes with mutations that code for ARVD that have not been discovered yet. In fact, the doctors have found that 50% of the patients who test negative for ARVD actually do have ARVD. At the same time, everyone who tests positive for ARVD does in fact have the disease. Getting a negative on the test doesn't give the doctors any new information to work with but getting a positive would. If Greg had tested positive, his immediate family would also undergo genetic testing to determine if they had the same genetic mutations as Greg- but because he tested negative they will not be tested. Greg will be giving a blood sample that will be used in research for the purpose of discovering more genes that are associated with ARVD.

While the genetic counselor was not able to give us helpful information, Dr. Russell certainly was. He is an expert at heart transplants and works closely with Dr. Calkins. Johns Hopkins is world-renowned for their clinical and educational excellence, and the transplant program is no exception. Because of the caliber of Johns Hopkins and Dr. Russell, we were extremely interested to hear his opinion on Greg's heart. After examining Greg and going through the details of Greg's medical history, Dr. Russell confirmed that every decision the doctors at INOVA have made thus far regarding Greg's heart have been correct. According to Dr. Russell, Greg's has all the symptoms that are typical of a patient with severe heart failure and Dr. Russell affirmed the excellence of the doctors at INOVA, the transplant program, the post-transplant care that INOVA provides. We felt tremendously relieved after meeting with Dr. Russell. Knowing that he, an expert in the transplant field, is in agreement with Greg's doctors and hearing him recommend that Greg continue to be treated at INOVA instead of switching to Hopkins was very comforting. We are very grateful that we were able to meet with him!!

Moving forward, Dr. Russell suggested that Greg's doctors adjust his "dry weight" so that Greg is more comfortable. This would require them to increase his diuretics. They would continue to increase the diuretics until Greg's kidneys show signs of distress (one of the biggest risks of treating transplant patients is their other organs failing while waiting for the transplant). If this doesn't cause drastic drops in Greg's blood pressure or damage to Greg's kidneys, they may be able to keep Greg more comfortable while waiting for his heart. The doctors have been keeping some extra water on Greg to protect his kidneys and help his heart pump more effectively- but the trade off is that Greg's symptoms (abdominal pain and swelling, fatigue, decreased exercise tolerance, and increased shortness of breath) have increased. At the same time, we know that Greg is fortunate to be doing as well as he is. So many people are confined to the hospital while they await transplant and we have been so blessed that Greg has been stable enough to be home and return to work during this time.

While at Hopkins a specialized echocardiogram was done on Greg's right ventricle. This is part of the ARVD diagnosis process and will help the doctors determine if Greg's heart function is decreasing at an accelerating pace. If so, it will put more emphasis on getting a heart quickly instead of waiting for the perfect heart. We are hopeful that the input from Dr. Russell as well as the echocardiogram results will help Greg's doctors make the best decisions regarding his care, and we are so grateful for the chance to meet with Dr. Russell. Not only was it obvious that he is an excellent physician, but he was extremely kind to and supportive of us. What a blessing!

We both continue to meet with our counselors weekly and have really benefited from the chance to work through the issues that we are facing with someone who knows how to help people through traumatic situations. While Greg and I are walking down the same road together, we carry different burdens and are facing different trials, and because of this we are very blessed to have individual counseling sessions. Each day is still a struggle in many ways, but the Lord continues to be faithful and gives us enough grace to get us through each day (even when we think that we won't!).

Thank you for your continued prayers and support along this journey. We love you and are incredibly grateful for your presence in our lives!

Love,
Elise

Fundraiser Thank you!

2010-04-22T20:32:00.001-04:00

Hello!

We've been meaning to sit down and thank each of you who took part in the fundraiser for everything you did and are doing to help us- but we never seem to find the right words. And how could we? What you've done for us is beyond anything that we can even comprehend, and there are no words to adequately express our gratitude. We were shocked, humbled, overjoyed, and brought to tears when we heard how much you had raised for us - currently the total is at an unbelievable $31,400!! We never imagined that we would be the recipients of so much generosity- it is truly mind boggling.

So many of you spent hours making baskets, putting together auction items, cooking and serving food, counting money, making sure that the technology was working, etc., and we are so thankful for the sacrifices you made to help the fundraiser be a success. Through you, we have seen Jesus at work - you have literally been his hands and feet. Through you we have experienced God's love. And because of you we have a fresh and expanded understanding of God's grace - that he has and does give us more than we could ever deserve, that his love for us is unending, that he is with us every step of the way, and that his grace doesn't demand that we perform in order to receive blessing.

As you can see, the fundraiser was not just a monetary blessing for us (though it definitely was that!) but it was also a spiritual blessing for us. You have encouraged us to press forward, to keep going in the midst of this trial, and to remember that God is for us, with us, and knows all of our needs.

Your generosity has lifted a tremendous burden from our shoulders. It is such a relief to know that our needs are provided for ahead of time!

Below is an article that was published on the Pittsburgh Christian Living Examiner by a woman who attended the fundraiser. We are grateful for her support of us and this chance to publicly thank so many of you. We are truly blessed. These words feel so insufficient- but please know how much you mean to us.

Love,
Greg and Elise

Follow up report on the Greg Boros fundraiser sponsored by his brother Nathan Boros' senior project

April 16, 10:17 AMPittsburgh Christian Living ExaminerCarol Hamilton

Nathan Boros by the display he made about his brother, Greg Boros

Photo by Tim Boros, Nate's twin brother

Nathan Boros is indeed his brother's keeper. For his Seneca Valley High School senior project, Nate chose to help his elder brother, Greg Boros. Greg, who turned twenty-five on April 12th, needs a heart transplant.

Nate organized a spaghetti dinner and silent auction on April 11, 2010 at the Harmony-Zelienople Methodist Church. Over 540 people attended the event. Nate is thrilled to report today that thirty thousand dollars have been raised so far.

Nate wrote, "The community support and love has been made so tangible in how they have given to me and my family. The emotional and spiritual boost that comes from an event like last Sunday may prove to be more valuable than the actual money itself. God has been so so good to my family and I and it has been through the people of this community that are being His hands and feet."

At the dinner, volunteers bustled, serving salad, home made bread and rolls, beverages, spaghetti with meatballs, and dessert to the guests. The church hall overflowed with people and a line stretched up the steps from 4:30 to well after seven as people waited to be seated.

Sadly, Greg and Elise couldn't be physically feel the hugs and love that flowed from the guests. Greg had to have a right heart catheterization on April 8th. The catheterization showed that there isn't excess fluid accumulation around Greg's heart and the function has not decreased since his last catheterization on March 4th. However, Greg's doctors insisted he stay in the Virginia area and not travel to Pennsylvania for the weekend.

He and Elise did join in the fun via web cam. A large screen at the front of the room allowed the guests to see and hear Greg as he shared some of the lessons he's learned along the way, especially by reading about the trials the apostle Paul faced in his ministry. Greg thanked the crowd of well-wishers, telling them they were his anchor.

At least he and Elise could get a glimpse of the people in the jam-packed room from a web cam that scanned the many faces. Hopefully the couple in Virginia could see the expressions of love and care as it generated to them.

The web cam crew also showed Greg and Elise the tables full of gift baskets and prizes for the silent auction and people got a chance to chat personally via computer.

If you would like to make a tax-deductible donation to help with Greg's medical bills, please send a check payable to "HZUMC MISSIONS" with Greg Boros in the memo line to: Harmony-Zelienople Methodist Church, 285 Evans Road, Zelienople, Pa 16063. The church will administrator these funds to Greg and Elise.

In closing, Nate writes, "If you have caught a glimpse of Greg and Elise's heart for sharing their faith please consider becoming a part of their ministry support team as they serve at George Mason University through Campus Crusade for Christ (CRU). I encourage you to research CRU and what it is that Greg and Elise do everyday in helping young people come to know Jesus. To become monthly supporters of Greg and Elise, please see their profile through CRU's website. You can learn more about the mission of CRU at www.ccri.org. Greg an be contacted directly with questions at greg.boros@uscm.org."

Greg's blog details his medical journey:
http://gregboros.blogspot.com

For information about the dinner and the silent auction:
http://gregborosbenefit.weebly.com

Home from the hospital!

2010-04-09T17:12:00.001-04:00

Hello!

Thank you so much for keeping us in your prayers over the last few days! The Lord really took care of us and we have good news, however it was a frustrating and drawn-out time for us. We arrived at home around 3:30 this afternoon, exhausted and glad to be out of the hospital!

The doctors did decide to perform a right heart catheterization on Greg, which took place yesterday around 2pm (after a 3 hour wait in the prep area!). The catheterization went well, and it showed that Greg's heart function has not decreased since his last catheterization on March 4th. It also showed that there isn't excess fluid accumulation around the heart. This was unexpected considering the 10lbs Greg had gained in 1 week. Looking for fluid, the doctors decided to also perform an ultrasound of his abdomen (to look for fluid) and legs, to look for blood clots. Both of the ultrasounds came back negative- which is wonderful, but perplexing. The doctor's only explanation for why Greg would have gained the weight so quickly is that they had made him too dry with diuretics since coming home from the hospital, and for whatever reason, his body decided to retain more water to get back to a good balance over the last two weeks. Since nothing has changed about Greg's diet or fluid-intake, this is strange- it can't possibly be fat tissue or lean muscle weight, but they can't find excess fluid on him (at least with the tests they performed yesterday). It also doesn't explain the increase in his symptoms, but since the numbers they look for are OK the doctors aren't changing his treatment for now. We are to call them first thing on Monday with his weight, and we'll be going in Wednesday for our usual clinic appointment, if they don't decide to see him beforehand. Since Greg's condition hasn't deteriorated, he'll stay a 1B on the transplant list, which is a blessing because it gives them more time to wait for the "perfect" heart instead of rushing to get any heart that will match.

Overnight, Greg did have a long stretch of ventricular tachycardia (the dangerous rhythm of his ventricles that can cause cardiac arrests). It didn't progress to him needing to be shocked by his ICD, but the doctors were concerned about it. This morning they reprogrammed his device so that it will record more v-tach events than it has been (his ICD didn't record this one because his heart rate didn't get high enough, but the heart monitor he was wearing notified the nurses). This will enable them to get a better sense of the amount of vtach Greg's having, and if its increasing the way that his atrial arrhythmias are increasing.

All in all, we feel relieved to know that Greg isn't in serious danger from the increased weight. We are frustrated by the lack of information that was gained, but as they keep telling us, that's just a part of the transplant process. Every patient is different, and Greg's right heart failure is rare and therefore much harder to anticipate, plan for, or treat. The medical staff keeps reminding us that we can trust the doctors- and we do- but even more so we trust that these past few days were part of God's sovereign plan for getting Greg the perfect heart at the perfect time... or for whatever it is that the Lord has planned for us along this journey. As excellent as our doctors are (truly, they are fantastic), its nice to know the God of the universe is the one who is ultimately in control and that He knows precisely what's going on with Greg's heart, because He planned it.

Please pray that we will continue to trust the Lord, that He would give us the grace we need to get through each day, and that He would guide the doctors every step along the way. We are so grateful that you are with us in prayer.

Love,
Elise

In the hospital

2010-04-08T08:59:00.001-04:00

Hello everyone,

Yesterday afternoon, Greg was admitted to the hospital by his heart-transplant doctors. Over the past two weeks Greg had been gaining water-weight very quickly, despite his doctors doubling his doses of diuretics. Along with the water-weight has come increased symptoms (fatigue, bloating, loss of appetite, soreness throughout his body, etc.) and he's felt worse and worse as the week has progressed. We went to the heart transplant clinic for an "emergency appointment" on Monday, after he gained 3 lbs over Saturday night. At that time, the doctors said they couldn't do anything yet and to wait and see if he continued to put on more water weight as the week progressed. He did, and by yesterday morning they deemed it necessary for him to be admitted to the hospital.

He was seen by Dr. Desai (the head of the transplant program) who decided to give him a dose of IV diuretics last night and one this morning to see if the stronger dose would help. If by this morning Greg lost all the excess fluid and all his symptoms disappeared, it would be a sign that he wasn't responding to the diuretics at home and they would give him an additional "booster" drug to help keep the water off, and send him home. If the IV diuretics didn't work- they would do another right heart catheterization today to see what's actually going on in his heart.

We haven't seen the doctors yet this morning, but so far Greg has gained another ounce of weight, instead of losing the amount necessary. We're still waiting to see if the second IV diuretic has been effective, but it seems unlikely at this point. Most likely, Greg will be getting a right heart catheterization and remaining in the hospital for another night as they try to determine what's causing the increased water-retention.

The doctors tell us that this is a normal part of waiting for a heart- any time there's a drastic change in how a patient is doing, they are admitted to the hospital so that the doctors can do everything possible to keep them as comfortable and strong as they can be while waiting for their new heart. We'll probably be back here again many times before Greg receives his heart- and its a blessing that we live so close to the hospital!

While in some ways it feels like a relief for me to be here (it takes the pressure off of me trying to determine when to call the doctor, and watching him to make sure his symptoms aren't changing, etc.), Greg is very anxious to go home.

Please pray for wisdom and insight for the doctors as they try to figure out what's happening in Greg's body, and for peace and patience for us as we "hit" this new bump in the road. Our prayer is that Greg will just need a different medication and that his heart failure isn't getting worse. Yet, we know that God is in control of every detail in Greg's body and in the process of waiting for and getting a heart, and that above all we need to pray for His will to be done (even when that's hard to do).

We'll keep you updated as we get more information.

Thank you for walking this road with us,
Elise

Post from Greg - Matthew 11:1-6

2010-03-24T00:30:00.001-04:00

Each month Elise and I send a prayer letter/update to a special group of people who have partnered with us financially in the ministry here at Mason, in the effort of seeing the gospel spread to every GMU student. As I was writing this month's letter, I realized that there were portions of it that I really wanted to share here on the blog. Below are those portions - please know how much Elise and I love you and appreciate your tenderness, care, and prayers. There are many times we'd feel lost if it weren't for you and what God does through you...

...The first thing I wanted to share is that Elise and I are OK. I know that there have been some people who have been worried lately, especially by our blog posts. I want you to know that part of the plan for the blog is for us to be completely transparent with anyone who cares to read it – even in dark moments. This is really intentional on our part, because we want people to know that it's OK to be a Christian and for life to be awful – it's possible to lose all your faith in life while keeping all your faith in Jesus. Many of our days, thoughts, and emotions are dark, hopeless, and confusing (and as one person recently pointed out to me, Elise and I aren't suffering perfectly - no one ever has or will since Jesus). But what we want is for people to know that it is OK to not be OK - you can be a Christian and still be adrift in the darkness. It doesn't make you a bad Christian, doesn't mean God loves you any less, doesn't mean that you're a bad or weak person, or that you don't believe deeply enough, or that you need to have more faith. The truth of the matter is that some people are called to suffer in this life (which is one of the many dramatic lessons of Hebrews 11 - some people are called to glorify God with the life they live, while others are called to glorify Him with the death they die).

One of the simple truths of being a Christian is that God demands we be perfect, but He doesn't expect us to be perfect, because He knows we're not perfect, which is why He gave and gave up His perfect Son. The apostle Peter backslid into sin by capitulating to Jewish dietary law, and had to be called out on it in front of everyone by Paul (Galatians 2:11). John the Baptist, the greatest mere man to ever live (Jesus declared John "the greatest of those born of women" in Matthew 11:11) – anyway, that John the Baptist spent his last days rotting in prison, and finally had his head cut off and served to a dancing girl on a silver platter. And before he met his end, he sent a messenger to Jesus, his cousin, whose coming he'd spent years proclaiming, asking "Are you the Messiah, or do we wait for another?"

Have you ever thought about the implications of John's question? The simple truth of it is that John's life had degenerated into a horrible mess, that mess didn't fit his picture of what life was supposed to look like, and in a weak moment he doubted the divinity and power of Christ. Because after all, if cousin Jesus is in fact the conquering, reclaiming messiah foretold by the entire Old Testament, then what the heck am I doing in a prison cell??

Now here's why I bring it up: Whatever measure Jesus was using for "greatness", he declared John the greatest of our species. And if the greatest mere man to ever live doubted Christ during a storm in life, and if God intentionally had that doubting recorded in His holy book, then I think its safe to say that there's a place in Jesus' kingdom for those who are adrift in darkness and can't find the way out. By the grace of God, neither Elise nor I have ever doubted Jesus for a second. But we have spent much time in the valley of despair – and that's OK. It's OK with God, and it needs to be OK with His children as well. Check out Psalm 23 – nowhere does it promise that God won't lead us into "the valley of the shadow of death" – it does, however, promise us that He will "be with us" in it. Elise and I want you to know He can and will use this season (or new reality) in our lives just like He did our old season when we were experiencing victory. I feel total freedom to share even our dark moments on the blog, simply because I feel totally free in the Gospel to be what I am. We're light-years from being perfect, we need God to be working on us constantly to make us holier and less sinful and more in love with Him – but it's OK to ask God to meet you where you're at. And in the meantime, He's using our defeat for His victory.

Here's an example of what I mean: One of the countless emails we've received in the wake of our blog posts was from a young woman in college who has suffered from clinical depression for years and has recently been thinking about killing herself. A friend referred her to one of the blog posts, and God used it to call her into an awareness of His love – she wrote us saying that what God said to her through that post has forever changed her life, she's no longer suicidal, and Christ is now her treasure. If that were the only good that came of the entirety of what God has planned for Elise and I to go through, we would do it in a heartbeat. It's an honor that Jesus would use our stupid little post in such a way, and it's an honor to be connected to that young woman's life...

... I'm running out of space to write, but I want to share one more story of victory that came about even in this season of defeat: The other day, Matt Bedker (one of my disciples) came to our apartment to visit. Matt is an original "Monday Thinger" - do you remember that? "The Monday Thing" was the group that Elise and I put together last year to explore matters of faith and spirituality with non-Christians. Anyway, last spring, The Monday Thing played a part in Matt coming to know Jesus, and on spring break last year he actually took the plunge and placed his faith in Christ. I love him so dearly, and it's been wonderful to watch his faith grow by leaps and bounds the past year. When he showed up here last week, he informed me that it was the one-year anniversary of his becoming a Christian.

In one year, Elise and I and you and all the rest of the team have gotten to watch Matt go from being in a very dark and very Christ-less place to being a man whose faith is incredibly deep and mature, and only becoming more so. And oh by the way, do you want to know why he was sitting in my living room during spring break, instead of down at Panama City Beach with the rest of the Cru movement? He didn't have the money to go to Florida, because he's currently raising support, because he applied and was accepted to Cru's East Asia Summer Project for this coming summer. One year after becoming a Christian, Matt's giving up spring break so he can spend six weeks sharing the gospel 24/7 in a country where Christianity is so repressed I can't even tell you which one it is. Can you believe that?

Matt is yet another story that could only be possible through Jesus. Life can be (and is) torture, but it's also mercy. And awe. And love. And those are realities that are OK experience at the same time.

-Greg

Post from Greg – Jeremiah 29:11

2010-03-10T12:13:00.001-05:00

I felt like I was going crazy last night and went outside for some fresh air around midnight. Jesus brought a song to mind that I've really loved for a long time, and I wanted to share the lyrics with you:

I take my refuge in the palm of Your hand
I take my comfort in Your perfect plan
I take my sorrow and lay it down at Your feet
I take my refuge where I can be free

I take my shelter in the shade of Your wings
I take my pleasure in the hope that You bring
I take my weakness to the foot of the cross
I take my refuge where I can get lost

In You, Oh Lord, In You, my God
When there's no where to turn
And there's nothing that's true
I find my peace here in You

Right now I don't know if one bit of this song can be said truly about my spiritual walk. Its all stuff that I know is true in my head, but I have a really, really hard time knowing it's true in my heart.

When I posted yesterday, I was writing in desperation. Please forgive me for that desperation, and know that I've asked God to forgive me too.

Jeremiah 29:11 says, "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Sometimes I don't believe a word of it. But it's all true. And I need to believe it - I want to believe it.

-Greg