Hello, and welcome to the forum Blonde504/Elle. I am sorry that your husband is so ill. Hep C is such a nasty disease. I was diagnosed with it in '93, though I know I contracted it in the late 60s. I basically went untreated and did well for years, except for fatigue. Suddenly, in '05, a hepatocellular carcinoma (HCC) of 12 cm x 11.5 cm showed up on annual ultrasound. It had also metastasized to the inferior vena cava (large vessel that comes off the liver.) I went to Mayo and they literally saved my life with treatment and a rt. lobectomy. For 4 yrs., I did fine....then, the end of March this year, it was found that I had a new HCC. I was evaluated for transplant over a 6-week period (look for my thread entitled My Transplant Evaluation.) The tumor was growing rapidly, so on July 18th I had chemoembolization. I have been listed for a new liver and now am just waiting (see new thread, My Journey On The Waiting List.) In 3 mos., if I haven't yet been transplanted, they will scan me to determine the size of the tumor. If it has grown much, I'll again have chemoembolization.
Throughout all of this, my liver has not decompensated. My enzymes are always elevated, but my bili is normal. I have no varices and minimal ascites, for which I take Lasix and Aldactone twice a week (reduced from daily and a higher dosage at one point.) Edema and ascites, plus increasing fatigue and need for sleep, are the only side effects I've had thus far (knock wood.) My MELD (which I calculated myself and Mayo got the same number) was only 7 prior to the HCC, which increased my MELD to 23.
I'm telling you all this to let you know that everyone's story varies slightly and that there is always hope. Back in '05, after the original tumor was found at Shands, they told me they were sorry, but there was nothing they could do for me. I refused to accept that death sentence and went to Mayo. And I am much older than your husband. Six years later, I am still here.
I'm assuming that your husband had diabetes prior to his liver failing. That presents special problems, but it's treatable. It's also possible that the TIPS has increased his hepatic encephalopathy (HE.) I am really sorry that he has been in the hospital so much that the evaluation for transplant has not yet taken place. It's really a shame that he can't have it started while he is in the hospital. I think I'd fight insurance on that.
The other members who posted gave you very good suggestions about using this site. Please do be sure to check out the Caregivers thread, as you will get much support there.
Again, welcome, and I'm glad that you found us.
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland