Man. I'm so sorry to hear that. Genetics are a testament to life's unfairness. How many doctors have you got pitted against one another?
That's a hell of a thing, and I'm not really sure what can be said. I am glad to hear that you're not at a transplant level of severity yet, at least. Have you thought about having your case to referred to like Mayo or someplace like that?
I always kind of assumed that was the case to be honest.
FWIW, I feel similarly quixotic (and masochistic) whenever I try to explain to people why the internet is an inherently insecure place. My therapist is of course doing appointments via telemedicine, which makes sense. But her primary service sits on top of Zoom for the actual video chatting part, and Zoom is a shitshow from a privacy standpoint. She uses another provider called Doxy which seems less terrible...they at least use Vonage's API which appears to be a direct end-to-end calls rather than through their servers as intermediary. Sometimes I wish I knew less. Not going to lie, am checking out server pricing from my hosting provider (Vultr) and wondering how much a Jitsi instance would run me per month.
Well, guess you've done all you can do at that point.