Hep c treatment advice

[Lilian45A]

Hi folks, My husband is at week 15 on triple therapy for hep c and cirrhosis,is anyone else a'partner of someone with hep c............we wasn't told just how hard this treatment was....the side affects and just how ill you will actually feel, although hubby is now undetectable viral load, and Telaprevir is finished, he feels worse now than when he was on them, I guess I just need to hear that it does get better or something, this all came as a huge shock to us, he's had it for over 30 yrs, so his liver is also cirrhotic  ..... I guess I'm just not coping to well, so to winge on here, just need to let off a bit of steam lol ........

[Lilian45A]

Thanks for all this new info.......omg were not seeing an transplant specialist, maybe once he has his scan next week we will know exactly where we're heading, can I ask you how long the diuretics took to begin working, he started them on Monday , it's now Friday with no difference at all...........your comments have really given me a boost, Thankyou, and stay well... :)

[orphanedhawk]

The fluid retention is called ascites. It's a side effect of decompensated cirrhosis.
This happened to me. Once I got rid of the ascites with diuretics I was able to keep it from reoccurring for 3 years by eating a no salt diet. You need to read all labels and not let him eat anything with sodium. Cheese and bread usually have salt.
Also he should have no red meat. It can contribute to another side effect called encephalopathy.  He probably will be put on a medication called lactulose to control it.
He still needs protein. He can get that from eggs, fish, chicken, tofu and beans.

I hope he is being seen by a transplant specialist.
At this stage of the game he will be needing a liver transplant. After he is transplanted if the hep C becomes problematic, he will need to do treatment again.
This is what happened to me. It was so much easier doing treatment with my new healthy liver than when I had cirrhosis, AND it worked !

Don't give up hope, just take one day at a time. Don't forget to also take care of yourself.

Best of luck.
OH

[swhep]

I was also not fully aware of the treatment, I am in 20th week incivek triple therapy. I am more exhausted now than I was on incivek. I am 43 and my recent fasting blood glucose levels are high ( I am trying hard to excercise to fix it), I have almost lost my job recently, I am on medical leave to save my job.

I have HCV from a blood transfusion from a car accident in '89. Both my legs were broken at many places and I had undergone many surgeries to fix between '89-'91. With lot hardwork, excercise and god's grace I could run on treadmill after the surgeries. After going through all these, I can tell you that this treatment is the toughest one that I went through in my life.

My family also has very tough time dealing with me as I am not contributing and easily raged during this treatment.

Still I am planning to complete this triple therapy as I have been reading here about people who had gone through blood transfusions and other complications. May good fortune be with you during this time.

[Lilian45A]

Thanks all for commenting on my post,update this week on hubby is the hospital have now put him on diaretics as he has started to retain fluid in his abdomen,he's in loads of pain an very uncomfortable, also has diabetese now too, omg will this ever end, he also has to have another scan next week, was talk of them maybe stopping treatment....omg what happens then?....... His liver is in a really bad way......does anyone now what they then do if the treatment for his hep c is stopped...... :( really  tough times for all who's on treatment, my heart goes to you all ...........

[barbh111]

can anyone tell me what "stage 11 " means?

[Advocate1955]

My husband is 59, has had Hepatitis for 30+ years, has Cirrhosis, and we just found all of this out in 2007.  He has treated and failed three times.  It is definitely a day to day challenge coping with your own feelings about his chronic illness, the difficulties of his treatment, while at the same time supporting his needs and advocating for him or supporting him in advocating for himself.  Since it is so critical for his health and for his healthy future, it's equally critical for you to push through your fears, anxieties, frustrations, etc., and do the best you can.  As OH said, take care of yourself too.  There is a lot of burden on the spouse (am I supporting enough? am I advising him correctly? how can I help when he feels so awful? where is the person I used to be able to talk to and rely on?)...but he is fighting for his healthy future, so do the best you can, and push through.
Advocate1955

[orphanedhawk]

Welcome to the forum.

Treatment is difficult for most people, and especially when you have liver damage.Remember he can't help having no energy to do anything and treatment can cause extreme irritation and depression.

Take care of yourself, and know that it will not last.
As a transplant survivor I can assure you treatment is worth it.

Do remember to take care of yourself too.

[JasmineT]

The meds wore on me too after the incivek stopped.  He should talk to the doc, maybe ADs would help if he is not on them now.  It takes weeks after tx to recover to close to normal.  It definately does get better though.  In fact I feel better than prior to tx.  Hang in there.  

My hubby let me be, ignored my exhaustion, fog and rage, and quietly just took care of things and me.  He is the love of my life.  Not sure how I could ever live up to that if the tables were reversed.  You can't fix him, but he will come back to you soon.  Have faith.

[working dog]

its tough helping someone....they may say things you just can't believe...try to let it go....and good for you for helping...some people breakup over tx issues....i think if you post more info on him you'll get the info your looking for....good luck....billy