Hi all.
I’m a 60 year old wife/mom/grandma with Cirrhosis secondary to NASH. I was diagnosed a year ago when they found a clot in my hepatic vein. Now I have lovely esophageal varices, ascites, and portal hypertension. A few months before diagnosis, I also started having trouble with my memory and had difficulty finding my words. Encephalopathy I’m told! The list goes on and on. I was evaluated for a living donor transplant. I have a large, wonderful family, with so many willing to share their liver with me. A month ago I was told I had been turned down by the transplant team. It seems that they don’t think I’m sick enough. 8 months ago I was too sick and because of the clot, was unable to move forward with a transplant. My MELD ran from 15-26. I spent the next eight months jumping through hoops. From dental exams, lungs, heart, colonoscopy, endoscopy, mammogram, Pap smear, etc. All systems a go! Except it’s not a go. They say no. The whole purpose was to do the transplant before I’m too sick to handle it.
What I didn’t mention is my experience with the first surgeon that evaluated me. He took one look at me (I’m about 50 pounds overweight) and said...”you are too fat for a transplant” His exact words. I was crushed. I sat there with the tears running down my face while he ridiculed me. It gets even better. I’ve had two spinal surgeries and am on pain meds for pain management. He insisted that I was unwilling to deal with my narcotics addiction. If I had any hopes of even getting a liver from a “high risk donor”, I needed to get my drug addiction under control. I left that first day feeling defeated before the evaluation even began. They called me the next morning to ask why I left. I explained how I’d been treated by the surgeon. They asked if I’d be willing to come back and meet with the other surgeon. I agreed to continue with the evaluation. Later as I read all the notes, it was clear that the stigma of being a complainer followed me through the entire evaluation. The surgeon that had ridiculed me, gave me the thumbs down for the transplant because I was unwilling to deal with my drug addiction, and weight. He said I was confrontational and didn’t have a clear understanding of what was involved in a transplant. I sat and cried while he belittled me and he called that confrontational. From the time I read the notes, I knew what their decision was. Yet they made us make another 6 hour drive to hear that decision.
Has a anyone else had similar experiences? I’d love to hear them.
Joyce
What should I ask my gastroenterologist 
Please help. 19 y/o female
NASH
Need your opinions about my latest Dr. appointment. 
NASH and NRH
