NASH and cirrhosis of the liver.

I have Stage 4 compensated cirrhosis (NASH.). I have been having extreme stomach pain. The last 3 liver MRIs mentioned small problems with my gallbladder-like fluid in the gallbladder. No gallstones. My primary doctor said he thinks it is my gallbladder. My hep doctor said any surgery would kill me but I am too healthy for living donor liver transplant-confusing. My primary doctor had arranged a consultation with a surgeon. The hep doctor spotted the appt and called the surgeon. At the visit the surgeon said I had to discuss with a doctor at a tertiary center. My blood work is low across the board-platelets 54. I am scheduled for a HIDA next week. If it shows that the gallbladder is the culprit then I am going to look for a surgeon. I went on a really bland diet but my body reacts negatively to all food. The pain is indescribable. I was vomiting bile but I had botox for a spastic esophagus so I don’t vomit. The bile is now in stool or urine. I don’t eat processed foods, no fast foods, no fried foods-red meat no more than twice a week.

I have tried but the pain is beating me down.

Hi Rose, this sounds like a real catch-22. I moved your message to this existing discussion:
- NASH and cirrhosis of the liver. https://connect.mayoclinic.org/discussion/nash-and-cirrhosis-of-the-liver/

I did this so you can connect with members like @mollyb1968 @rosemarya @agent @jeanne5009 and others.

I wish you the best of luck with the HIDA. Here's a related discussion that may interest you.
- Hepatobiliary iminodiacetic acid (HIDA) scan: What does it tell you? https://connect.mayoclinic.org/discussion/hidascan/

Have you considered getting a second opinion at a large medical center like Mayo Clinic?

I have a message into Mayo and one into Cleveland. My primary has offered to call them. Right now Wash Univ thru my previous hep dr said they could not remove my gall bladder. The surgeon my primary doctor said he got a call and said I needed to to to a tertiary center-I had no idea what they even was. My son 5 years ago had a liver transplant at BJC with no issues. NORD reached out to me due to some rare abnormalities and has offered to advocate for me. I know thru an endo fip that I have a spastic esophagus. I have a lot of vitamin issues-a scurvy one is up to 12 incidents that GARD said hadn’t been seen before. Two years ago my back collapsed on itself but cement fixed it. There is a rare left circumaortic left renal vein that appeared on this current MRI. Several centers have said that I am too healthy for a living donor liver transplant. It seems like an oxymoron. I have never drank or smoked. I went to Mayo for a uterine biopsy about a year ago because BJC said no to that. It was done as an office procedure with no problems. I joined an Apple study almost 4 yrs ago that was suppose to last 4 months. It reported afib but more tests affirmed no afib just symptomless extra beats. No treatment needed.

I went back to last 4 MRIs-
Gallbladder mentions:
July 11,2022-Gallbladder contracted
July 2021-Adenomyomatosis at the fundus
July 2022-some fluid in gallbladder
No gallstones-

I have had bile vomit, in stool, in urine. The pain now is daily—nights worse. I am not allowed OTC pain and I don’t take prescription pain meds. The pain from this recent attack made me a cheater-there have been several times I took extra strength Tylenol because I couldn’t take it. I take meds for HE but I think it more for the fact that the xifaxin keeps down inflammation. I take3 pills a day for ascites-previous hep said no ascites because if pills drain them you don’t have them-same for varices, if they don’t bleed you don’t have them. The only other meds are 70,000 iu of D weekly, 3,000 of C, 50,000 of A, folate acid, B6, and Zinc. The vitamins started about a year after liver disease. Liver disease is in my family: Mayo geneticists have been looking at it. I believe there is a mito problem but science isn’t there yet.

I put myself on an ultra bland diet back in Nov. No fried foods,no spices, no processed, no fast foods, red meat 2 small portions twice a week, all fat removed before cooking meat. My body hates all food. Interesting thing is my weight doesn’t fluctuate even though less calories.

If the HIDA doesn’t reveal any clues then what? I don’t have a plan. Is the answer to let nature either heal or kill you? This disease adds a very deep questioning of your existence. Somehow I know the answer but I can’t surface it.

when I started taking gabapentin I know it caused me to feel very spaced out and have memory loss within the first couple days I took it. and that was on 200 MG. Just a very late fyi. Hope you're doing well.