Post Transplant Q ~ on new hep c meds

Welcome to the Hep forum, freedom. Can you tell us when you got your transplant, your genotype, and a bit about your liver disease journey?

My husband is pre-transplant, listed at Mayo, AZ. He has cirrhosis from Hep C. He treated 24 weeks with interferon/riba, twice. GT3, relapse the first treatment, SVR the 2nd.

Those taking your combo of meds don't normally have any pain as a side of treatment. Mostly we see nausea and heartburn, anxiety, fatigue, out of breath, insomnia, and mood issues. But those don't come the first week of riba, other than heartburn and anxiety. You probably take something like omeprazole. That takes much of the heartburn/stomach problem away. Wondering what they discussed with water intake with the riba for you?

We do have several post transplant treating, or having completed treatment in our midst. Hope they will pop on and welcome you, as well.

Glad to have you here. Would love to hear more about you! Welcome, again. Big Hugs

Wow! MELD 42 is too sick. The big question here!!!

What took so long to become listed?

Question 2=what Hep C genotype are you?


My poor guy has been on the list 1 1/2 years, his MELD dangles around in the mid-teens. Labs today for UNOS, but I expect no change. Became normal to be stable. Not healthy....stable ;) You don't need to tell us how difficult ESLD is. We have about exhausted both of our patience on it.

Hate to see your prograf rising. You are taking typical anti-rejection meds, so I just don't know, but hope it's found. Pain is not a common complaint with treatment at all. That, we see much of. Solvaldi is wonderful. Perhaps something else going on. Glad you have good doc's~

Themister's Hep C and stage 4 cirrhosis was found in a routine physical due to odd fatigue in 2005. He had high ferritin and iron levels, had been told off and on for twenty years that he "may have" hemochromatosis. This time, the doctor he saw wanted to "rule out Hep C". Good thing! Since he felt good, was healthy, hard working, busy busy. Wonderful man. I adore him. I hate HE!

We hear from Mayo, and they also checked those high iron numbers...just liver disease. He treated 2005-6...fail. Then again 2011-12...Yay, success. 6 months later he was in ESLD with vericies found in cardia. He had a gastric bleed 2010. TIPS was needed so he would not bleed to death.

So glad you are alive and fighting still. I enjoy your story. We moved 1,000 miles from a rural NW state last year, because we needed to be in a state with a transplant hospital...for the rest of his life. It was crazy, two moves in 6 months, he broke his shoulder two months after I got us moved into a short term rental. Sold our home out of state, bought one here in PHX, and got him eval'd at Mayo...in 6 months time. I am not certain I am sane, freedom, lol.

Ok...we are off to Mayo. Big Hugs

Miz~ML

What a wonderful support team you are for your loved ones! Kudos!

My story is all about denial...

After coming home from a biz trip that had taken me out of the country for over a month I wasn't feeling well. I went to my family physician had a quick physical and took some blood. The doc put me on anti biodics just to play it safe. A couple days later he called and said I had a venereal disease. Imagine my shock I had been married and monogomous for 19 years. I had Hep C. ~lol
I made an appt with a gas doc who explained blood to blood blah blah. Had some xrays done and we found cirrhosis. I was placed on some meds.

Denial ~ two years later...

Ascites sets in as well as hepatic encephalopathy I was referred to Mayo. After a few appointments and they are no ordinary appts all day freeking appts.
(Anyone who has been knows)
I started the interferon and Pegasus treatment. I became sicker stopped taking it and started feeling somewhat better~ Denial ~ i missed appts and Mayo dropped me.

I would get my meds from my gas doc and get the Ascites drained as out patient at my local hospital when needed. That worked for another year.

Then came the rough stage sleeping for days, memory loss, vomiting, hallucination, I can remember barking at my children trying to communicate with them. Lol Stupid Denial...

Then it happens flipping out at work I couldnt remember my name why i was there etc,. 911.... I was taken to Good Sam. A hepotologist team examined me and had a come to Jesus talk with me. I had Geno 3 and a meld of 20.

Getting listed is a long long process and with my denial and kicked out of Mayo I was not that desirable. I had to call my dad (retired IRS) and come clean. He helped through the process of getting me listed.

2 months later still trying to get listed going to meetings and selling myself to the board. My day came my husband found me on the floor comatose he rushes me in. Im yellow my meld is in the 40`s. My liver has failed. Kidneys in failure.
3 days comatose then 1week I was kept in a coma to get me well enough for surgery.

I was dying.... when i came out of my coma i hallucinated for days. I was 80 pounds and looked like some one beat me.
Finally feeling like myself just a little weak i want to go home. ~DENIAL

I was listed within 24 hours I had a donor. I had surgery the next morning. It still didn't feel like I was dying. It became REAL when my mom came with the Pastor and he read me my last rights. My aha moment.

I blue lined twice on the table the first time the surgeons brought me back the second they just waited to see if I would or not.

I was in ICU incubators for a week. My memory speach and basic motor skills gone. I couldnt walk.

5 weeks physical therapy allot of crying and nightmares. At 90 lbs i got to go stay with my dad i needed full time care still. I was still in a wheelchair. Lots of home therapy, a couple relapses, 100 lbs and 2 months later I got to go home with my husband.

I have had stints put in three times, and my hep c is back (we knew it would be) my insurance has finally approved Sovaldi and Rib.
Three weeks my hep c looks great my doc is so happy he hugs me and tells me we are going to make history!

Thats my story ~ if there is anyone i can help or needs to hear my story in more detail, becausein rrealitythere was so much more to each iincident. How my family reacted to my secrets, being layed off from work, etc.. let me know. The Good Lord kept me alive for a reason..

Post Edited (freedomisearned) : 10/16/2014 5:09:11 PM (GMT-6)