Friday, December 30, 2011
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!
Saturday, December 24, 2011
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!
Thursday, December 22, 2011
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,
Wednesday, December 21, 2011
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!
Thursday, December 15, 2011
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!
Friday, December 9, 2011
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,
Friday, November 25, 2011
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.
Sunday, October 30, 2011
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!
Friday, September 9, 2011
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.
Tuesday, August 2, 2011
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.
Monday, August 1, 2011
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!
Friday, July 22, 2011
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!
Thursday, May 12, 2011
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.
Wednesday, April 27, 2011
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.
Tuesday, April 12, 2011
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.
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!
Tuesday, April 5, 2011
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!
Friday, April 1, 2011
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!
Thursday, March 31, 2011
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,
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,
Tuesday, March 29, 2011
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!
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.
Monday, March 21, 2011
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!
Thursday, March 17, 2011
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,
Thursday, March 10, 2011
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!
Tuesday, March 8, 2011
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!
Friday, February 11, 2011
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!
Thursday, February 3, 2011
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.
Monday, January 24, 2011
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!
Tuesday, January 11, 2011
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!
Friday, January 7, 2011
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,