Hello!
Thank you so much for all of your prayers and the encouraging words that you sent us! We arrived back home around 6pm yesterday (Wednesday) evening and were so glad to be back. Greg was dealing with some pain at the site of the catheter (they inserted it in his neck this time) especially when moving around and was exhausted so we took it easy and went to bed early last night.
Greg ended up receiving seven bags of IV potassium supplements during his stay which increased the level of potassium in his blood work to a much safer level. They removed the PICC line (an IV that travels from the upper arm to the superior vena cava so that potent medications are distributed in the blood quickly) through which they were administering the potassium which is great because there was a chance he'd come home with it and have restricted activity.
The heart catheterization was very informative. It showed that Greg's pressures are ok and that they have not gotten significantly worse since April (his last heart cath.). Greg's heart output was low, but the doctors think it is due to one of the booster diuretics he is taking. The booster is also probably the cause of such significant potassium loss. With this new information the doctors made changes to Greg's diuretics that will hopefully increase cardiac output and maintain safe potassium levels. We go to the hospital on Friday morning for a blood test to make sure Greg's potassium level is staying high.
While in the hospital we were given the results of the specialized echocardiogram that was done at Johns Hopkins last month. According to the echo, Greg has right ventricular dysplasia that is consistent with what doctors see in people with ARVD (Arrhythmogenic Right Ventricular Dysplasia). This doesn't change much about the course of treatment for Greg but it's one more piece in the puzzle of determining whether or not Greg does in fact have ARVD. We may be going up to Johns Hopkins again to have a cardiac MRI performed on Greg. In the past this has been impossible because of Greg's defibrillator/pacemaker but Hopkins has found a way to safely perform MRI's on patients with cardiac implants. Not only would this help in the diagnosis of ARVD but it would also help determine how much Greg's heart failure is progressing.
Overall, the doctors feel that Greg is fairly stable right now. His heart failure has slowly gotten worse since it was discovered, but the treatment regimen he is on seems to be preventing it from accelerating dangerously. They will continue to watch him very closely to make sure they know exactly how fast it's progressing and do everything they can to slow it down. We're really thankful that the doctors found and treated Greg's low potassium before he developed any serious ventricular arrhythmias.
Last night we were both struck by how we had gone into "emergency mode" and just got through everything that happened without really processing it. We are definitely learning to take these types of hospital stays in stride- since they are part of waiting for a transplant, and we'll probably have many more of them- which is helpful and shows a lot of God's grace in our lives. But as we were reflecting on it last night we were feeling the strain of living a life where you can be called into the hospital at a moment's notice for a couple of pretty uncomfortable procedures. And we were really fortunate because if Greg had been doing worse than he was, he would have had to stay indefinitely. I guess what I'm trying to say is that the hospital stay went as well as we could have hoped, but it still took a toll on us emotionally. Which is part of the reason we are so thankful for your prayers! We continue to struggle in dealing with waiting for a transplant in so many ways and having your prayers, support, encouragement, etc. is an incredible blessing that really does carry us through. Thank you for caring and for being there for us. We appreciate you.
Love, Greg and Elise