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.


francopoli:

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.


posted by OftenBen: 38 days ago