this post was submitted on 13 Dec 2024
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[–] stringere@sh.itjust.works 7 points 2 weeks ago (1 children)

Backstory: I have hemochromatosis. My body doesn't eliminate iron like most people's. As a result I am at risk of getting iron deposition in my organs; most commonly the liver and kidneys are affected.
The simple treatment for hemochromatosis is therapeutic phlebotomy; bloodletting. When my ferretin (iron) count in my blood gets high I have to donate blood to get it lower. This wouldn't be an issue except I need to do so weekly/bi-weekly and not the requisite waiting period blood donor centers require.
Because of this I have to get 'therapeutic phlebotomies' ordered by my hepatologist.

I could not afford to pay my entire balance with the healthcare provider my doctor's office is part of. Their system would not allow me to make a partial payment and would not allow me to check in for my appointment unless I paid the amount in full ($450+). Because of this I could not attend my doctor's visit and because we did not have a visit they cannot prescribe the routine maintenance my condition requires.

TLDR: I have a genetic condition with one of the easiest treatment plans which is giving my blood away, something that saves lives, but I cannot receive treatment because I cannot pay my full balance with the healthcare provider.

[–] Jumi@lemmy.world 1 points 1 week ago (1 children)

How does this work with the reproduction of new blood cells when you donate so often? I donate blood as often as I can and missing 500ml of the red juice is really noticeable.

[–] stringere@sh.itjust.works 2 points 1 week ago* (last edited 1 week ago)

I did drink a lot of water but otherwise felt really good with fresh oil. I donated 32 times the first year I was diagnosed. Weekly was the most frequent I could do it, sometimes if my vitals or hemoglobin were off I would have to skip. My ferritin was 2700ng/mL when I found out. The normal range is 30-400. When I had a liver biopsy it showed my bile was carrying iron, something my hepatologist had never seen.

Once I got my ferritin down I was able to donate less often but whenever my count gets higher I have to donate more frequently. Unfortunately I no longer can see the doctor who is familiar with my case and can't afford the time off of work to find a new doctor covered by my insurance.