I remain distressed that Social Security's new Listings for liver disease remains as brutal as ever. One feature of dealing with clients with failing livers is officially called fetor hepaticus. It's sometimes called "breath of the dead." It's an extremely disturbing smell on the breath of some people with failing livers. I wonder whether any of those who drafted these Listings have ever smelled fetor hepaticus. The idea that anyone whose liver disease has progressed to this point can work seems preposterous once you smell it yet such patients are often denied Social Security disability benefits. It's not the smell that disables them. It's just obvious that anyone with that smell isn't long for this world. I can't emphasize too much just how viscerally disturbing fetor hepaticus is. It smells as if the person has already started dying on the inside. Why are patients in this condition being denied?
Jun 13, 2023
The Breath Of The Dead
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5 comments:
Changes in Listings have no bearing on allowance rates, only on *when* cases get allowed. Apart from signaling to us how much medicine you say you know, this rather plaintive and poetic post doesn't address any real world scenario.
@9:48
The only way changes in the listings would have no bearing on allowance rates is if there were literally zero step 3 awards, which is not true. There are circumstances where step 3 would direct a finding of disability, but if the claim were to proceed, steps 4 or 5 would not.
I had a client who had this weird disease that coupled liver disease and Crohn's. When one was active, the other was quiet. Until the liver went haywire. I was absolutely certain that she must have met the listing at some point during the process. I had to have a former math teacher help me with the computations to prove that she clearly met the liver listing much earlier in the process. I was wrong. She did not meet the liver listing until the day before her transplant. That was SO WRONG! Her legs were like elephant legs. She could not get nutrients from food, her body took the nutrients from her bones. She belted her seat belt and broke three ribs! After her transplant the Dexa scan said that she was 5 standard deviations below the norm. To not improve this listing is an abomination!
Did anyone identify fetor hepaticus when they had the opportunity to submit comments to the NPRM?
I suppose it unfortunately varies by state but I rarely get a meets case. DDS pays the meets.
Only times I get a meets listing is when the person appeals the onset date and we don’t see many because few representatives want to invest the time for what is likely not much money in the best case scenario. The other is when there is some dramatic change in health.
One of my favorite moments was when a representative in the opening stated the claimant met 3.02. I interrupted as I’m too prone to do and stated I’d double-checked and their client didn’t have the requisite FEV1 or FVC values on the testing. Representative said “That is correct but meets 3.02(C)(1) not just average of two but the last three PFT’s were all met for DLCO. Flip over (still had books then) and flip to the tests (still had paper so took a bit). Announced a favorable decision, thanked the representative for a job well done (did not ask why hadn’t sent me a brief or letter arguing the point) and apologized to the claimant for the delay because no one else had caught the test results.
Almost two decades in, never had another show up that clear cut.
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