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comment by francopoli
francopoli  ·  156 days ago  ·  link  ·    ·  parent  ·  post: RE: OB's Heart

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.

    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.

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.




OftenBen  ·  156 days ago  ·  link  ·  

    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 wish I had that kind of spine.

    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.

For anybody listening, this is sage advice. A pattern I have followed for time immemorial.

    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.

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.

    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.

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)

francopoli  ·  156 days ago  ·  link  ·  

    I wish I had that kind of spine.

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.

    Nobody is exactly sure how I am able to pump enough blood to stay conscious. I don't have an answer myself.

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.