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November 15, 2010 - 5 Weeks in the Hospital and Getting Worse

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 catheterization 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 catheterization 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 catheterizations, the doctors have been treating Greg under the assumption that the drier 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 it's 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. It's 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

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