Finally, we may have found the smoking... - British Liver Trust

British Liver Trust

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Finally, we may have found the smoking gun.

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We had been able to put it aside, and the hospital agreed they had made a mistake when they said Margaret had Cirrhosis. And was, in fact, NASH with Grade 1 fibrosis.

Still, NASH was a surprise, as Magaret was a nondrinker, not obese, and had no health conditions that would even be considered for Fatty liver. In fact, the CT scan when she got COVID in Jan of 2020 showed her Liver was normal.

But third-party reviews of the CTs/US/MRIs all showed something every doctor seemed to have ignored: that she had Adrenal Hyperplasia.

That helped explain a constellation of issues she had run into thin skin on her arms and extreme back pain that they could not describe. Her skin was always light colored, but she had developed even whiter patches.

Then they found the reason the US hepatologist was not overtly concerned: his consult records were not part of the original bundle from the Hospital.

In Sept of 2020, Margaret had tested positive for Hep A. And he started her on treatment for it, which is what caused her liver to swell dramatically in such a short period of time. Then, it returns to normal over 6 months.

But it seems every doctor between the US and Canada missed or ignored the radiologist's calls for follow-up on Adrenal deficiency.

Margaret developed pleurisy in her shoulder while in Canada. And the Dr started her on low-dose prednisone. And she rebounded well. During this period, she suddenly got back to walking.

Then went to the hospital for the Errosive Eshphugatis. The GI doc ordered 3 days PPI bid, then home. The ER doctor thought she had cirrhosis, so they started her on Ceftriaxone and Vancomycin. Within hours, she crashed. And they scrambled, trying to figure out what was going on.

So now the question is coming up: they stopped the prednisone, and if she was suffering an underlying Adrenal Deficiency, did the sudden stop cause an adrenal crisis? We know the Ceftriaxone led to a Drug-induced Hemolytic reaction, and the Vancomycin was overdosed, causing a kidney injury. But neither was able to explain how she went from about to be discharged to being rushed back in and being in multi-organ failure. She survived that and recovered. But passed in January after repeated insults from vancomycin destroyed her kidneys.

But now maybe we have the smoking gun, as she had been dealing with an autoimmune that had damaged her Thyroid. Did the Covid and auto-immune attack her adrenals? And for one reason or another, she just missed by doctors as they tried to figure out why her liver swelled so dramatically over such a short period of time.

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2022minks profile image
2022minks

It sounds like you have managed to get some answers to issues from Margaret's medical journey, my mum died of NASH, and a different path to Margarets, but when you are left with so many unanswered questions after their passing, you on behalf of them have to get their care properly looked into, the sad thing is when answers only come to light after their death. I wrote a "Reflections of care" letter to all parties involved in my mums care, and noted the good and bad side as well as questions to my mums past health that should have flagged up liver disease way before her late diagnosis at decompensated stage. I can say compiling it helped work through my own grief, it doesn't bring them back but you do it for them, for feedback on quality of their care and to hope others going along a similar path with liver disease get better care in the future 💕

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