Tuesday morning. Lots of prayers needed today

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

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

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

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

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

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

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

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

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

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

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

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

7am update from Greg's mom

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

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

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!!!

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

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!

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

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

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

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

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

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