Greg was discharged from the hospital yesterday afternoon and we are thrilled that he's home! Before leaving we had the opportunity to discuss his case with Dr. Desai (the head of the heart transplant team) and learned a lot of valuable information.
From Monday - Wednesday the doctors realized that it is not going to be possible to keep Greg at a consistently safe potassium level. Since the only diuretic that is effective on him wastes a lot of potassium, they don't have many options. Even with the PICC line and the high doses he was receiving in the hospital, his potassium level wouldn't stay up. They decided that it would be best to try to maintain him at home with high doses of oral potassium pills since they weren't having much success in the hospital - and we heartily agreed! So Greg actually came home with his potassium at the same level as it was when he went into the hospital Monday. He goes back tomorrow for a blood test to make sure his potassium hasn't continued dropping and then on Tuesday to reevaluate how he's doing.
We also learned that the doctors think Greg's atrial fibrillation has been going on for a while - that he's been having bursts of it (they've actually seen this on his device for months) that kept increasing to the point where he's been in a. fib. constantly since August 1st. This explains why Greg's heart failure symptoms were so variable and hard to predict - and why it took so long for the docs to realize what the problem was. It is not uncommon for someone to develop a. fib. later in life and most people can live an active life while dealing with it. The problem in Greg's case is that his heart depends heavily on his atria to get his blood pumped to the rest of his body - this is because his right ventricle is so blown out that it is ineffective at pumping. But instead of having a good squeeze in his right atrium that helps force blood to and through the right ventricle, his right atrium is quivering (the doc. said to picture of bag of wriggly worms) at an average of 300bpm and is not giving that big pump that his heart needs. So this makes his heart failure symptoms worse, increases the rate of degeneration of his heart, and if left unchecked would result in his other organs failing. Not a pretty picture.
Because it is so serious the first priority is to try to stop the a. fib. We have to wait 1 month before they can do the cardioversion so that the blood thinners have time to get rid of any existing clots and prevent any more from developing (due to him being in a fib for so long). It's too risky to do a cardioversion without waiting for the whole month. Dr. Desai isn't incredibly hopeful that they'll be able to get Greg out of a. fib. He actually said that Greg developing a. fib. is a landmark on the way to transplant - a sign that his condition is getting significantly worse. There are many tactics that they can try to stop the a. fib. and we're hopeful (more so than Dr. Desai seems to be) that they will be effective and buy us more time to wait for the perfect heart. However, if they can't stop the a. fib. we are going to start moving a lot quicker towards transplant and they will accept an o.k. heart instead of waiting for a perfect heart because the longer he's in a. fib. the shorter amount of time they have to transplant him before he's too sick and it's too late.
Greg and I are really hoping and praying that they will be able to stop the a. fib. and put off transplant. Not only do we want to wait for the perfect heart but we also just want to wait as long as possible. Actually getting the transplant and all of the factors that come with it are terrifying and we hope to put it off as long as we can. The doctors agree with us, but are basically saying that we're getting closer to the point where the benefits of the transplant outweigh the risks of the transplant. We know that eventually that's where we're headed - it's just scary. If you pray for us, please pray that we would trust that God has the perfect time chosen and that he is in control. It feels like this thing keeps spiraling out of control but we know that it's not true - the hard part is trusting. Please pray also that we would trust in God's goodness - and for the a. fib. to stop!
Thank you so much for being there for us,