Liver Transplant Expert Forum
decompensated ESLD + BCIR pouch
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decompensated ESLD + BCIR pouch

After being diagnosed in Stage 3 Level 4 cryptogenic cirrhosis 4 1/2 yrs. ago, my 63 yr. old husband "fell off the cliff" about 4-5 mo. ago. He's 5'11" & normally 210 lbs, today he's 176 lbs. Looking back, I remember the "liver" odor 18-24 mo. ago. He's now on 1100mg. rifaximin X2 day (was doubled in the last month) + 3 hypertension meds. Also restricting fluids to 50 oz/daily. He has hypovolemic hyponatremia (serum sodium is around 123), thrombocytopenia (platelets = 125, but have been 71 - 98 recently), hepatic encephalopathy (ammonia = 133), portal hypertension, esophageal varicies (4  banded at once 1 mo. ago), rhabdomyolysis (is losing 5+lb/mo. with calf muscles less than 1/2 their proper size), hemoglobin about 8, serum iron as low as 9, fatigue, sleeping 15+ hrs/day, coughing. He had a total colectomy 15 yrs. ago (ulcerated colitis, which I've read may correlate to an increased instance of future liver disease). He has a BCIR & cannot take lactulose at all. We had a horrible experience when the E.R. gave it to him at his first HE incident. The gastro guys had to intubate him in a procedure, he was so distended. Also, 8 yrs. ago he had low abdominal hernia surgery and 6 yrs ago he had gall bladder surgery. Throughout his life, he's been plagued with kidney stones. He has just been put up for transplant evaluation, through priority MELD status, though his score is only about 12.  My question is this; he is tired of his poor quality of life of just the last 6 mo. or so, & has had so much surgery & pain, with all his numbers crashing, should I insist he be evaluated? He's gone down so fast, at this rate there's no way he can survive the 18 mo. it may take for a donor. Are you familiar with anyone having a liver transplant with a BCIR? I appreciate honesty, not platitudes and am so hoping for some straight-forward answers. Good news would be wonderful, but the truth, whatever it is, is what's needed at this point. Thank you for whatever insight you can offer us.
Tags: ESLD, portal hypertension, hypovolemic hyponatremia, thrombocytopenia, cryptogenic cirrhosis, rhabdomyolysis, total colectomy, BCIR, Hepatic Encephalopathy
2 Comments
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Dr. Schiano - excuse the "not platitutdes" verbage. What I meant to convey was, I'm suspecting our very caring doctor, who's been through so much with us, just can't bring himself to be direct for fear of crushing all hope. Everyone is totally supporting and encouraging to my husband.
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Avatar_m_tn
Hope my questions get to you. I'm new to posting on forums and didn't know to put your name on my question.
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Thomas D Schiano, MDBlank
The Mount Sinai Medical Center
New York, NY
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