Hep C

My husband was diagnosed with hep c about 15 years ago. He has been monitored and has tried 2 treatments with no success. Last bloodwork was bad. AFP went from 8.0 to 86.8 and his liver function counts are in the triple digits. He is scheduled for an MRCP Monday and I am scared to death.

Hi Jelebeen,

Welcome to the forum.


We are a group of patients and loved ones affected by the various forms of liver disease.

Like you, my guy has Hep C and had every symptom in the book.

I found this forum several years ago when I too was scared out of my mind with what was unfolding at our house. When his cancer markers started to rise, I knew we were in trouble.

BUT, with management of his symptoms and careful monitoring, they got Mike on a transplant list and he was successfully transplanted. (after 6 months of documented sobriety...yes he was really sick but still drinking every day.)

We have members here who have experienced so much. So if you read back among the stories, follow some of the threads, you will find that liver disease takes a pretty similar path regardless of what caused the problem.) 

The scariest part for me wasn't even the tumor...I knew there were some good new treatments and even transplantation for HCC...it was the Hepatic Encephalopathy....with him sick AND acting so strangely.

There are some good research articles at the top of this forum...take a look at some of the sites.

There is a SEARCH button on the blue bar where you can enter a key work and old posts on that topic will pop up. You can even enter a screen name, like mine, Mama Lama, and you will see my back posts. Hep93 has kept her title the same over the past couple of years about her Post Transplant Blog...the whole story from pre transplant testing, TP, and post transplant woes is all there to read.

You are among friends here. Ask questions, vent some...we are here. We are not doctors, but we have the inside scoop on meds and symptoms and sides...and many of us caregivers know how it feels to be YOU.

My partner, Mike, is hoping to get into a study for a new Hep C treatment soon. Post transplant the life expectancy for recipients is much higher if the Hep C is cleared. That is what we are hoping will happen. (He was a non responder too, by the way.)

I am sure the MRCP is the first of many tests your hubby will have. I hope he is being seen by a Hepatologist at a major medical center where they do transplants...not that he needs one at the moment...but we have found that the best hep docs are there...they want to be part of the ACTION!

Best,

Welcome to our forum JB. Take a deep breath. It is scary but learn to take baby steps. We will be able to provide you with a lot of valuable information. I think one of the most important pieces of information that I have seen is to keep a 3 ring binder with dr reports and copies of lab reports. These often get lost. I walked this path with my partner and know it well. Take it one step at a time and come back often for information and support. Glad you stopped by.

Sandia

Post Edited By Moderator (hep93) : 11/10/2013 12:59:25 PM (GMT-7)

Thanks for all the info. My hubby is having an MRI of the abdomen and an MRCP. This forum is comforting to me and I am glad I found you. I am scared to death of what we will find but we cannot change it. We will take baby steps and hopefully we will make it through. I had a liver resection my self a few years ago. I had a hemangioma and the transplant team at Fletcher Allen Healthcare in Burlington Vermont took 70 percent of my liver. The tumor was the size of a tennis ball. That however was nothing compared to what my husband may be up for. Just praying things are not extremely bad. Thanks for all your help. Will keep you posted. This really help. Thanks. Hugs

Congrats on your successful resection, Jelebeen, and continued good wishes for your hubby. Where is he being seen?

Carol, that's interesting about the contrast. With my recent MRI, they were still using Gadolinium. They do wait until the last 3rd of the pics to infuse it.

Hugs,
Connie

Please do let us know of the results when you have them.

Hugs,
Connie

Made an appointment at FAHC withe liver and transplant specialist Dr. Elias. This doctor also practices at Massachusetts General. I feel better with getting another opinion. Will see this doctor on 11/26. Will keep posted.
JB

Not sure, but I think so. Will be coming out in January the doctor told my husband. I guess it is a good one for people who did not respond to past treatments.
Keep our fingers crossed I guess.

Robin

I am glad to hear that. Small World. Hopefully things work out. Thanks everyone for all your help.
Jelebeen