sovaldi-ribavirin post liver transplant

I had liver transplant 1 1/2 years ago. Had problems ever since. Pain neuropathy I had blocked biliary and pancreatic ducts and had multiple stents. Seven procedures in six mos. Have had bad liver numbers all along.

I started sov rbv treatment at four weeks viral load went from 11 million to 38 and liver enzymes normalized very happy but got so sick I had to stop tx for 5 days. I was worried about messing up response. Went back on and at week 6 undetectable

This grown man cried tears of joy. I have done all this with almost no support from drs .or anywhere else. I have been very sick all through this. Can't get straight answers have been told I can quit and no one will blame me.

I am now very anemic, barely functioning, feeling oxygen starved . I know I may sound negative that is not my intent. I have 15 days left and don't know if I can make it but I am still trying.

What I really want to share is if you have hep c get treatment before you have to have transplant. I know it works and don't want anyone to go through what I have if it can be avoided.

When I found out I had hep c I was already too sick to treat. It went to cancer in liver. I was fortunate to get a transplant and have a good wife to support me through the process.

And now she is working when she should be retired just to pay for my astronomical insurance and medical costs. Which is why I spend my days alone trying to keep my mind off the negative stuff as I struggle through this treatment.

I know I have a lot of problems that aggravate and make treatment harder for me. So if you can get treatment and avoid transplant and the rough road that leads to it PLEASE don't be afraid. Go for it.

I know people who are putting off treatment because of fear. It doesn't go away because you deny it. Don't do like me. Make sure you have support in place and go for it so you can hear the words hep-c free.

Sorry I'm so long winded, I haven't talked to anyone in weeks. I'm kinda wound up. Smile its good for your liver.

Post Edited By Moderator (MamaLama) : 8/21/2014 2:24:39 PM (GMT-6)

Buzz Daddy started his story twice...the miz posted on one and I posted on the other.

Here is her post. I will deleted the duplicate.

________________________________

Welcome to the Hep forum, bluz,

Just wanted to let you know we have folks post transplant that are treating here. Some have now completed treatment and waiting for for the final 12 week viral load (VL) result. It has been exciting times in the Hep C world this year.

So glad you found us. My husband treated Hep C with the old drugs and relapsed the 1st time, but did get SVR the 2nd time! Not without a lot of complications, though. Themister is my husband, and the one with liver disease. He is on the transplant list at Mayo AZ for a little over a year... MELD still in mid teens, so he hangs on and waits.

What genotype are you? Treatment 12 or 24 weeks? Don't be alone with this...come here and join with others who have a whole lot in common with you and your wife. Big Hugs, and big welcome....themiz
themiz, Forum Moderator-Hepatitis

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran
Post Edited (themiz) : 8/21/2014 12:17:02 PM (GMT-6)

BD, Do you think you should see the doc or head to an ER...fainting and shortness of breath can be a serious sign of many things from heart to liver and beyond. Your sweet wife isn't going to want to come home from work to find you on the floor. Call your doc. ML

Mama lama talked to nurse Dr told her to have me cut back on ribavirin from 1200 to 800 gonna try that and go to emergency if I get worse. Hope cutting back let's me finish. I sure want this to work

Thanks yes 12,weeks and with 18 days to go I have been laid up for last week or more don't even mind bedfast long as I can get through it. I really hope symptoms lighten up when I cut back I have heard of others doing that and clearing

Thanks holdfast my last bloodwork RBC 3.8 Hemoglobin 11.2. Hematocrit 35.0 get bloodworm Monday those numbers are old and when I felt much stronger
Bluz

The I agree will have labs first of week in bed all day today but cutting back seems to be helping
Bluz

Mix and mister. Thanks. Its amazing how little it takes sometimes to encourage and get a person back on track I hope I am still clearing virus as of last lab I was . cut back to 800 mg rbv instead of 1200 side effect now tolerable actually got out of house last two days haven't done viral load but everything else is good still anemic but not as much. Appreciate you. Bluz

1 week left on treatment. Having a rough time very concerned about health at this point 4 weeks ago coughed up blood went to Dr put me on bactrim for 2 weeks got a little better went to urgent care clinic Friday after coughing up blood again referred to integris er after 4 hours sent home told to use nebulizer no other meds after x ray and Bloodwork will walk In to primary Dr tomorrow can't Reilly cough up much really dry but pain and rattle in chest. I don't trust my primary Dr but in a bad position trying to avoid er I can't even seem to get anyone at liver or transplant clinic to even talk to it's nuts when they have me on treatment. Oh well thats where I am now. Still taking Meds hoping it is not suicide. How's that for cheerful? Bluz

Bluz,
Well, I guess Happy Labor Day is not going to do the trick here? I feel for you. It is difficult for something that makes you feel so rotten, to actually be the best thing in the world for you, isn't it.

Honestly, Themister got so darned sick with his 2nd treatment that he was hospitalized on rescue meds 4 weeks before EOT. Miserable sick. AND, his gallbladder pooped out and had to be removed, but with such low platelets, the risk was scary. So that was a bad time. It was right before the holidays, and he got an egg size lump in his neck...more CT scans and biopsy...to find a benign cyst. But really rough days I won't forget. I wanted him to stop, but the doctor said he could finish, and he only missed one dose. Afraid he would die trying to live. I get your despair with treatment. Not everyone has the worst symptoms, but then some do.

You are a complicated case, post transplant and all. We want Hep C gone, but of course you are concerned for your health. I would probably go to the ER with blood, if it were me.

I am thinking this may be the Riba Cough some complain about, but a doctor should see you. I am not liking the coughing blood at all. You are so very close to being done, and it is difficult for you right now. Please check in with what the doctor says tomorrow. Depression is part of treatment, and you have been dealing with you share of health issues. We care. Big Hugs

Bluz,

Sorry to hear you are feeling poorly.

Quick question: did you have abdominal pain prior to taking the Bactrim? If not, it may be that you need a probiotic or probiotic foods. Most doctors now recommend that when prescribing a strong antibiotic like Bactrim. I, myself, got horrible digestive problems after beginning a course of Bactrim for a UTI.

Feel better. You're counting down!

Hold Fast.

I really look forward to a time when I can encourage others with my own success story. It's been six rough years and I really believe if I can clear the virus I will feel good for the first time in a very long time JUST ONE MORE WEEK. I'M HANGING

about the same doc wanted to give me steroids and antibiotics but not until I clear w transplant Dr. I am allergic to most antibiotics and steroids might be problem w transplant so I will find out tomorrow I am sure this is ribavirin related almost through another day six more I am not worse. That's about it for today just trying to recover from hours at Dr office today. Thanks Much For concern I might be able to take steroids only have two antibiotics I can take don't want to waste those risk becoming allergic to them I will write later. nap time. Bluz