An update for those who care, for those who don't just block the self@ tag.
I continue to baffle medical science. I had a PA with decades of experience and a doctor with even more decades of experience tell me to my face that I don't fit any of their existing models of disease, so they can't really make any kind of prognostic statements.
My exercise tolerance is dropping.
My symptom-burden is increasing, and requiring increasing amounts of energy to stave off and manage.
Orders from each doctor continue to conflict directly. 'More water, less water, more of this drug, stay away from these...'
One positive out of today's appointment, I won't be having the transplant discussion for a while it seems. Sick, but not sick enough.
As someone going through health shit himself, my view is that every breath I get to make is a giant "Fuck you" to the universe. I'm in this for the long count. As an American, you gotta be your own advocate. get the data from each doc, make a folder, keep everything, and demand your medical records. If you skip over to a new doc, one that will listen to you, you will have all the charts to hand them. Most doctors, IMO, are data nerds at heart and love to see info and test results. Even when shit does not make sense, if they see a puzzle, they want to solve it. The tricky part is fining a doc with 1. the time 2. the motivation 3. the "I still Give A Shit" drive and latch onto that doc like a parasite. Not getting an answer is a pain in the ass, but we gotta stick with it and hope for something to tick. Awesome. Keep that out about 10-15 years and you will be talking about stem cell organ regeneration and shit. You'll make mk's week.One positive out of today's appointment, I won't be having the transplant discussion for a while it seems. Sick, but not sick enough.
I wish I had that kind of spine. For anybody listening, this is sage advice. A pattern I have followed for time immemorial. I am fortunate, I have (no hyperbole) world-class physicians who have literally written the paper on this disease. Their offices are practically next door to one another and they talk regularly. The unfortunate part is the that I don't fall within the scope of any of their models. Purely based on measurements and what has been recorded, I should have died twice. Nobody is exactly sure how I am able to pump enough blood to stay conscious. I don't have an answer myself. You know that line in The Matrix about how 'there are levels of survival we are prepared to accept' ? There are levels of survival I am not prepared to accept. I hate to be morbid about it, and it angers my loved ones, but there are levels of survival I do not find acceptable. The minute that we can grow me a new heart from scratch, or seed a ghosted organ with my tissue, sign me up. But I don't plan on taking one from 'The List.' (Caps and scare quotes intentional)As someone going through health shit himself, my view is that every breath I get to make is a giant "Fuck you" to the universe.
As an American, you gotta be your own advocate. get the data from each doc, make a folder, keep everything, and demand your medical records. If you skip over to a new doc, one that will listen to you, you will have all the charts to hand them.
Most doctors, IMO, are data nerds at heart and love to see info and test results. Even when shit does not make sense, if they see a puzzle, they want to solve it. The tricky part is fining a doc with 1. the time 2. the motivation 3. the "I still Give A Shit" drive and latch onto that doc like a parasite. Not getting an answer is a pain in the ass, but we gotta stick with it and hope for something to tick.
Awesome. Keep that out about 10-15 years and you will be talking about stem cell organ regeneration and shit. You'll make mk's week.
Through a series of twists, turns and "What the fuck just happened?" something amazing has dropped in my lap that I hope to announce.... soonish. For the first time in a long while I have a goal, a mission and people cheering me on. Kinda weird to type that out, even weirder to be living it. Sounds like you are either stronger than you think or you have shit that you have not yet done and need to stick around long enough to finish it.I wish I had that kind of spine.
Nobody is exactly sure how I am able to pump enough blood to stay conscious. I don't have an answer myself.
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.