Cooke is definitely the 'cath guy.' Rao has been a good resource with regards to my next transplant. She knows people in other Transplant Centers, which it turns out is a lot more important than it should be. I've only met Patel once or twice years ago, but I don't really remember him that well; not much to add there.

I have some medical training and have been curious enough about my care throughout the years to absorb some understanding about what numbers mean/matter, etc. If you don't mind me asking, what are your EF numbers? (these would be percentages) Have you been having edema in your legs and abdomen? Do they have you on any diuretics?

I don't know your level of exhaustion, but when I was waiting I would wear myself out just by shifting my weight in bed. It was pretty bad (my EFs were 7 and 12; heart function got down to 1.4 just before transplant). What really helped me was having them install a "trapeze" over the head of the bed; it's kind of a scaffolding with a triangle hanging down you can grab onto to lift yourself up just enough to scoot back after you've slid down past the point of being comfortable.

Other things you might want to ask about are (a) a humidifier bubbler (they hook it up to an air valve and it keeps your room humidity north of desert dry and (b) breath-right strips, because a stuffy nose + dry, hospital air makes for a rough night of sleep.

Sorry if this comes off as a ramble, but I've passed this stuff on to a LOT of pre-transplant patients and swapped a lot of stories with other recipients over the years. It's all front-loaded in my brain and comes pouring out once the gate opens. 🤷🏽‍♂️