Thank you so much for keeping us in your prayers over the last few days! The Lord really took care of us and we have good news, however it was a frustrating and drawn-out time for us. We arrived at home around 3:30 this afternoon, exhausted and glad to be out of the hospital!
The doctors did decide to perform a right heart catheterization on Greg, which took place yesterday around 2pm (after a 3 hour wait in the prep area!). The catheterization went well, and it showed that Greg's heart function has not decreased since his last catheterization on March 4th. It also showed that there isn't excess fluid accumulation around the heart. This was unexpected considering the 10lbs Greg had gained in 1 week. Looking for fluid, the doctors decided to also perform an ultrasound of his abdomen (to look for fluid) and legs, to look for blood clots. Both of the ultrasounds came back negative- which is wonderful, but perplexing. The doctor's only explanation for why Greg would have gained the weight so quickly is that they had made him too dry with diuretics since coming home from the hospital, and for whatever reason, his body decided to retain more water to get back to a good balance over the last two weeks. Since nothing has changed about Greg's diet or fluid-intake, this is strange- it can't possibly be fat tissue or lean muscle weight, but they can't find excess fluid on him (at least with the tests they performed yesterday). It also doesn't explain the increase in his symptoms, but since the numbers they look for are OK the doctors aren't changing his treatment for now. We are to call them first thing on Monday with his weight, and we'll be going in Wednesday for our usual clinic appointment, if they don't decide to see him beforehand. Since Greg's condition hasn't deteriorated, he'll stay a 1B on the transplant list, which is a blessing because it gives them more time to wait for the "perfect" heart instead of rushing to get any heart that will match.
Overnight, Greg did have a long stretch of ventricular tachycardia (the dangerous rhythm of his ventricles that can cause cardiac arrests). It didn't progress to him needing to be shocked by his ICD, but the doctors were concerned about it. This morning they reprogrammed his device so that it will record more v-tach events than it has been (his ICD didn't record this one because his heart rate didn't get high enough, but the heart monitor he was wearing notified the nurses). This will enable them to get a better sense of the amount of vtach Greg's having, and if its increasing the way that his atrial arrhythmias are increasing.
All in all, we feel relieved to know that Greg isn't in serious danger from the increased weight. We are frustrated by the lack of information that was gained, but as they keep telling us, that's just a part of the transplant process. Every patient is different, and Greg's right heart failure is rare and therefore much harder to anticipate, plan for, or treat. The medical staff keeps reminding us that we can trust the doctors- and we do- but even more so we trust that these past few days were part of God's sovereign plan for getting Greg the perfect heart at the perfect time... or for whatever it is that the Lord has planned for us along this journey. As excellent as our doctors are (truly, they are fantastic), its nice to know the God of the universe is the one who is ultimately in control and that He knows precisely what's going on with Greg's heart, because He planned it.
Please pray that we will continue to trust the Lord, that He would give us the grace we need to get through each day, and that He would guide the doctors every step along the way. We are so grateful that you are with us in prayer.