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MedHelp Member's Question

/HCVLiver damage/ Cirrhosis/Transplant/Tx

by silvermoon, Sep 05, 2004 12:00AM
I would like to ask if those here who have/had HCV, who had/have fibrosis/cirrhosis and have/are doing Treatment.. and those who have gone thru transplants,,   Would you PLEASE put down the details.. as in Tx, what and dosages, and adjustments, and problems and how they were dealt with. Also, other problems specifically cause by the amount of liver damage you and how they were handled.  Also, general area where you live, type of Doctor.and if you had transplant, WHERE and what was your experience.

  I know some of you have posted some info here before..but since I have been here it has never been  a solid picture, just bits and pieces.

If you'd rather email to me instead of posting here, you can go over to Out of Bounds and click on Visitors in lower left corner (have to scroll column all the way down), click on my IDname and then on 'send email'..  We have space over there to actually keep this type of info on for others to see, also, unlike here.  I am CERTAIN LOU would happily make a Thread or folder for this type of info.. Or it's easy to start a thread youself..  

I am VERY interested in this info, and iI am sure I am not the only one.   Your experienc can be of great help!  Thanx..
Member Comments (25)

by jonihs, Sep 05, 2004 12:00AM
To: Silvermoon
I don't know if you know my story or not, but here goes. In July of 2002 (on my 45th b-day) my liver failed. I was a heavy drinker, so assumed it was from that, however when I was diagnosed, learned that it was both. I was in ICU for 7 days, then went to rehab. I took all my meds, ate the way my nutrition lady told me to, and after 4 months, blood tests revealed I didn't "qualify" for a transplant anymore. My first G.I., who saved my life, told me I couldn't treat because of cirrhosis. Several months later, I found this forum, and mikesimon suggested a 2nd opinion. In November last year I started tx. I did 800 mg. of Copeg and 180 of Pegasys. 6 months because I was/am 2b. My sides were pretty bad, alot of brainfog and weakness. I couldn't take care of myself and my husband is only home week-ends, so I spent the last 4 months w/ my dad. I was lucky enough that my red and white blood counts didn't get dangerous enough to need extra drugs, however my platelettes got really low. I had to do weekly blood work throughout tx. and my doc was ready to give IV platelettes immediately if I started bleeding, which I didn't. The thing that amazes me, is that I got no riba rash. My skin was dry, but not unbearably so. I lost 18 lbs. cause I couldn't eat much. Other than that, I felt that tx. all in all wasn't as bad as I expected, having cirrhosis.   Joni

by silvermoon, Sep 06, 2004 12:00AM
To: joni
Hey.. and Thanx so much..  So, tell me , where do things stand for you now?   Perhaps the reduced dose of Riba accounts for the  lack of rash??  I believe 800 of riba is standard for 2a's ???     Did some of your liver damage reverse?

  I'm a Ia so it is recommended that I do 1000-1200 riba, but I understand that some, (Dr Cecil in particular) recommend lower dose of Riba with cirrhosis..?  I think.. seems like he also lowers dose of Pegasys .. first is full dose, then lower and gradually raises it?? with pts. with cirrhosis?

I want to clear of course, and when I start I don't want to have to stop b/c of sides/ bld cts.. mine are already low to start.. I'll be happy when the marrow stem cell  is available for us!

I appreciate your input!  when this thread is done, I'm going to save the info.  As you well know, it's a whole different ball game with major liver damage..

I am glad you are here sweetie.. Thanx!!

by new-sojourn, Sep 06, 2004 12:00AM
Why do you want to know ALL that?  What are your problems? A 1a or 1b has a totally different set of problems a 2a or 2b has. 48wks means twice the commitment, twice the chance to develope sx's and half the chance to cl.



After a few yrs of reading the posts from all genotypes, I sure am glad I was a 2b.  and treated. I cl'ed in 18 days and fin 24wks of tx w/few sx's.



It seems that the people who drastically change their lifestyle and eating habits before tx have an easier time of it.



Also, the sicker one is seems to be a motivator. If you are sick unto death, a little rash or indigestion is nothing.  If you've endured yrs of mysterious ailments and esculating health problems-incl depression and have no 'high risk' behavior, the dx of hep c explains so much, its hard to be angry or silent.

by jonihs, Sep 06, 2004 12:00AM
To: Silvermoon
The lower dose of Copeg was because of my weight. I weighed 125 when I started tx. I'm not sure if it had anything to do w/ geno, but I think mikesimon told me it was. If I were a 1, I would want to hit it w/ everything they would give me from the start and make darn sure that my doctor was willing to do everything possible to keep me on full dose. Especially w/ cirrhosis. You never know how many chances you'll get to tx. My doc who first started my tx. told me to stop tx. because of low platelettes, so I went to the internist who took care of me before I moved and decided to tx. She told me that she would do whatever it took to keep me on tx., even if it meant IV platelettes. I've never heard of any other docs doing that. You will also need to do the weekly blood tests, and make sure they run a liver function test at least every 2 weeks. I don't know if you're taking vitamin B-complex and a senior 1 a day, but you should be. Also limit your protein to 2 2oz. portions of meat and 1/2 cup milk or 1 egg per day. But make sure you have that much protein or your body will rob itself. Lotsa fresh fruit and veggies and at least 2 helping (1 tab butter or margarine) of fat every day. Red meat can improve red blood cells. Make sure you have no infections when you start, and yes, drink the teas.

by jonihs, Sep 06, 2004 12:00AM
To: Silvermoon
And yes, my liver did show improvement. It was pretty large because of inflamation and fatty liver, but now is back to normal size. I'm seeing a Dr. here (we just moved again) in 2 weeks to try to get 1/2 dose Peg for at least 6 months to try to heal more. Joni

by sher_, Sep 06, 2004 12:00AM
To: NS
I think it is a plug for another site is all thats about.

by Honey15637, Sep 06, 2004 12:00AM
To all people that are 1's!!  Don't ever give up! Our chances,,,yes are a little slimmer but hey,,,I'm doing the round of 52 weeks and the sides are doable!!  We will beat this disease!!  The 2's and 3's do have shorter rounds but can come here and ENCOURAGE us when they are through with their rounds...Isn't that what this is all about?  One by one,,,we help each other cross the line...Ohhh yeah,,,I knew that was why I came here....

by sher_, Sep 06, 2004 12:00AM
To: Honey/all
That was GOOD Honey...LOL



Billy asked me this morning if he was going to have the flu for 48 straight weeks! He feels bad,week,tired, and achy.He keeps going though just at a slower pace. I said no mR Billy only 46 weeks!



Have a great labor day everyone. Prayers to Florida!



by Honey15637, Sep 06, 2004 12:00AM
To: Sher
haha Awwww,,,You are cold lady to say "only 46 weeks" LOL  Honestly,,, tell him,,,it will get better,,,I remember beginning,,,I wanted to quit as the first couple of months were worse for me, His body is still adjusting to the shock!! Both you guys have fun Labor Day and enjoy!

by silvermoon, Sep 06, 2004 12:00AM
To: new sojourn, joni...
First, Thanx for responding.  I Titled this thread the way I did to attract those who have been there and get there input!!!

I want to know, because the treatment and the sides and treatment of those sides is bit different when you have cirrhosis..because you usually start out with other problems already in place.. and I am trying to get  the experience and views of THOSE who have been there or are there now and going thru it.. even though everyone is different, and every treatment reacts differently, I felt this info to be particularly valuable. It wasn't long ago that they would let anyone with cirrhosis do treatemt!!

I am 1a with mod-severe cirrhosis and blood counts that are already low and clotting time high, and getting ready to start Tx soon..

  I have a very healthy eating style as far as WHAT I eat, but I don't eat alot.. I eat only fresh food and freshly prepared by me food.. no fast food or pre-prepared foods ever.  My protein intake is low, but comes from grains, cereals, pasta, yogurt, and soy milk.. I almost never have true dairy, only eat egss 'in' things, and only eat pork or chicken or turkey once or twice a month tops..  Meats, dairy, and eggs don't digest very well for me.

   I take Bcomplex and several other vitamins and minerals..

  I am set up to have weekly labs when I start..

Thanx for your input.. I appreciate you taking the time to do it.  Take care.

by new-sojourn, Sep 06, 2004 12:00AM
I'm @ ESLD b/cl'd the virus so was able to stop the damage from hep c.  The sx's from hep c-ie the presenting  symptoms-encephalopathy, ascitiis, varicies, etc-are still present to a much lesser degree.



most joint pain, which was dx as arthritis disappeared.  gone.  the overwhelming depression for which I was under treatment for yrs is gone,  just gone.



As jonihs said, dietary changes are imperative.  the best diet for cirrhosis is a low fat dairy, fruits and vegtables and whole grains.  If you're having joint problems, watch your protein purines, even some vegtable proteins have purines.



Transplants have a set of problems and restrictions I did not want to live under.  Some transplant teams do not treat the hep c 1st, so people just get worse.  Most transplant people die on the transplant list.  the average wait is 23mo, the transplantee is tied to the transplant hospital, so long re-locations, monetary hardships and decressing quality of life were all factors i considered and then rejected the whole transplant bit.



A friend of mine, Jack Slater, has a series in the Seattle Times (on the web) about life on the transplant