My brother's liver was ignored by doctors, all of his doctors

This was posted by admin with permission of the writer who wishes to remain anonymous.

My brother, was diagnosed with cirrhosis in 2017. He went to ER on 6/16/17 because of leg pain. It turned out to be sepsis. Over the next few days his abdomen began to distend -- we were told that we had just never seen him lying down before (!!??), as it continued to grow, we were finally told "that's just him" "it's called a beer belly". We asked about a liver consult and we were told that we would need to do that on an outpatient basis -- earliest available appointment when i called was almost 2 months away! Anyway, looong story short. we found out in late august the diagnosis -- when we finally got to the outpatient hepatology appointment -- even though my brother was in-patient in some type of facility from 6/16 - 8/31! he lost 55 lbs, in 6 weeks before they finally gave him his first paracentesis so that he could finally eat! he used to weigh 196, he now weighs 123. it is unfortunate that he was allowed to de-condition all that time, not able to eat or walk -- it set him back so far, right from the beginning simply because they would only focus on his knee!

it took the PCP calling foul on the whole thing and sending him back thru the ER to make them deal with what they should have dealt with weeks prior. also, sadly, He had been to the doctor 3 times for an unexplained rash over the course of a few months prior to this June event with sepsis. if they had actually done any exploration, they may have realized that it was his liver BEFORE it failed. anyway, not to write a book here (because it feels as though one could!), I guess I would just trim it all down to the fact that the medical model seems to dismiss patient's complaints too casually. then the system with the "hospitalists" creates a lack of continuity and opinion when one is in the hospital (6 different doctors in 14 days! -- no wonder they could not observe the change in his abdomen).

 

I would complain about the lack of patient education even after diagnosis, but frankly, so many of the practitioners don't seem well informed themselves -- you can't pass on knowledge that you, yourself don't have. While specialists are a good thing -- it can get to the point that everyone is so micro-focused on their specialty that no one is watching the macro -- and sometimes things fall into the trenches that divide the specialties. ( I've likened the experience of this to the scare crow in the wizard of oz after he was attacked by the flying monkeys: first they took my knee and they threw it over there. then they took my liver and they threw it over there. then they took my brain and they threw it over there. and so on). it's not only exhausting to see all these specialists, it's risky. (I've been trying since 1/27 to get someone to claim domain over dangerously low thiamine. pcp says ask hep, hep says ask neuro, neuro says ask the pcp --- in the meantime, he's at risk. in short, I guess you look to them for guidance, and there is little guidance given. It's a lot of work just navigating the medical waters, when all you want is a lifesaver that can pull you along to safety.

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