/HCVLiver damage/ Cirrhosis/Transplant/Tx

[silvermoon]

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..

[jonihs]

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

[silvermoon]

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!!

[new-sojourn]

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.

[jonihs]

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.

[jonihs]

And yes, my liver did show improvement. It was pretty large because of inflamation (inflammation) 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

[sher_]

I think it is a plug for another site is all thats about.

[Honey15637]

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....

[sher_]

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!

[Honey15637]

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!

[silvermoon]

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.

[new-sojourn]

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 list.  He's going down hill and tied to the transplant center.  Transplants are no cure-all.  Its just a new set of rules and a new set of problems.

During the 2 yrs Jack's been on a transplant list and tied to Seattle, I've traveled the world, regained a good level of health and a certain measure of peace.

I can't overstate the neccesity to make long lasting, long reaching lifestyle changes.  those changes alone can improve your health so, like jonihs and myself, transplants are not 'needed' b/c there are thousands sicker, many to die, on the transplant lists.

These changes can be started immediately, before tx.

Unlike jonihs, i had a very easy time of tx, b/I had the full support of my partner the full time.  that, and cl'ing so early, made tx not a problem.  I was so grateful to have the chance to tx, nothing was an insurmountable problem.

Tx was a blessing and literally a second chance @ life.

[new-sojourn]

What does #6 mean?  to be continues..i'm off to see the Marley Bros. saw Dave Matthews last nite and the fair and rodeo the nite before.  those are trips fromone side of the state to the other.  that's what I mean about transplants and lack of mobility.  you cna't travel hundreds of miles away everyday, spend the wknd camping in the wilds, go to all day and nite remote concerts--you have to be in constant contact w/the transplant hospital-esp on hoidays when the death rate on the hyways increase.

I was willing to do everything possible to cure and heal and support a liver friendly lifestyle so I wouldn't have to trasplant.

Nothing has been too difficult for me to acheive the highest level of health I can.

Red meat festers in your bowels for days waiting to be digested.  ugh.  Of all the flesh proteins, red meat is worse, pork, turkey, chicken, fresh water fish and grains are the list of most harmful to least harmful for cirrhotic people.

2 oz of beef is 1/2 of a big mac pattie-and the 1/2 pattie is the only thing on a big mac one should eat.  So, one big mac beef pattie is the alottment of protein for a day, b/red meat should not be eaten everyday if you have cirrhosis.  Nevermind the salt!

I was in a study to see if it was fesible to tx End Stage Liver Disease-past cirrhosis, liver's decomp'd-3 yrs ago.  Well, I cl'd a 37yr old transfused, mis dx infection in 18 days-2b.  So, that old medical wife's tale about not tx b/too sick is just OLD THINK!  Anyone can successfully tx and I think everyone should.

[new-sojourn]

I didn't mean that last post just for you.  I'm a little befuddled lately.  My mom died in my arms and wrote me out of the will.  I don't know whether to laugh or cry.  @ least I lived to see it.  It was a race @ the end!  B/I guess I won and lost!  Oh well.

I'm just stickin' around to see what happens next!

[bystander2002]

I read this just because of the title. all the above- Ive got the damage, got the cirr, did tx(s), on the tp list.



Just so this issue, (the facts) dont get blurred again -

people with cirr have always been able to do tx as long as they were stage A

what changed (what IS new) is that now people with stage B are allowed to do treatment-
And-
people with stage C are even being expermented with (at some tp centers) (not all).

----for what its worth, my doc said that stage c can only do tx when tp is expected in less than 3 mths-----




silver, what stage are you talking about when you say mod to severe cirr?  name the stage please.

[bystander2002]

LOL

[silvermoon]

New Sojourn and Joni:
Thanx again,  I DO appreciate it very much!  It is hard to remember on here WHO had what, WHICH is PRECISELY WHY I posted the TITLE as I did.  I 'thought that you two had had severe liver damage, but wasn't positive, and this way , you could share IF you felt like it , rather than someone calling you out with information!  I don't find the achives on here very easy to use, besides, there are others who don't post often who may have had info to include as to their experiences.
  As for the lifetstyle and dietary changes, as you can see from what I posted, I have done that for years.   My cirrhosis developed more as a result of years of constant, unrelenting stress. I always made sure everyone else was taken care of and protected. but didn't take care of or protect myself! Stress is one of the top causes of chronic health problems.  The following  article was on WebMD:
  __________________________________________________________
"" How does stress affect health?"
"The human body is designed to experience stress and react to it. Stress can be positive, keeping us alert and ready to avoid danger. Stress becomes negative when a person faces continuous challenges without relief or relaxation between challenges. As a result, the person becomes overworked, and stress-related tension builds.

Stress that continues without relief can lead to a condition called distress -- a negative stress reaction. Distress can disturb the body's internal balance or equilibrium -- leading to physical symptoms including headaches, upset stomach, elevated blood pressure, chest pain, and problems sleeping. Research suggests that stress also can bring on or worsen certain symptoms or diseases.

Stress also becomes harmful when people use alcohol, tobacco, or drugs to try to relieve their stress. Unfortunately, instead of relieving the stress and returning the body to a relaxed state, these substances tend to keep the body in a stressed state and cause more problems. Consider the following facts:

Forty-three percent of all adults suffer adverse health effects from stress.
Seventy-five to 90% of all doctor's office visits are for stress-related ailments and complaints.
Stress is linked to six of the leading causes of death: heart disease, cancer, lung ailments, accidents, cirrhosis of the liver, and suicide.
The Occupational Safety and Health Administration (OSHA) declared stress a hazard of the workplace. In terms of lost hours due to absenteeism, reduced productivity and workers' compensation benefits, stress costs American industry more than $300 billion annually.
The lifetime prevalence of an emotional disorder is more than 50%, often due to chronic, untreated stress reactions.

Information provided by Jerome F. Kiffer, MA, Department of Health Psychology and Applied Psychophysiology, The Cleveland Clinic Foundation.
Reviewed by Michael W. Smith, MD, WebMD, August 2004.
©2002, The Cleveland Clinic.""
  __________________________________________________
Thanx again,for sharing.. I appreciate it immensely. And YES, that IS what this site is SUPPOSED to be about!

[sher_]

n.s.    Bummer about your mother, sorry to hear that but as Chevy said, you did the absolute right thing and you will always have peace in your heart by doing the right thing and thats better then an inheritance.

Chev  I am taking all your good advice and using it! I bought a pair of big comfy suede chais chairs, a very soft throw, bought him a new laptop {to do his ebay}, I am cooking up a storm and backing off when I see that look in his eye! Yesterday was Olivia B-day, we had a surprise party and Sat we are kyaking with her so shes a happy camper too! Thanks for asking! AND how is Ms. Chev doing post tx?

[Sam Hall]

I still enjoy Crab Patties at the Krusty Crab. I know that is product placement but that silvermoon started it in the first post.
SH

[Plutonium-kid]

Hey, Hey, Hey, SAM HALL.....

I would very much like to know how's our friend Britpete doing these days???

Ben

[bystander2002]

Silverspoon, I just saw your post at

http://forums.delphiforums.com/hepcotb/messages?msg=36.2

Is that what your collecting everyones info for?

(Don't answer that! lol) (or make something up... quick) lol

[Honey15637]

Hey everyone!  Did you guys enjoy your holiday?  I just got back from barbeque and was it ever good!! If that doesn't put on some weight,,,I don't know what will LOL
Wow,,,This thread is twisting and turning and I see Bystander is collecting info,,,LOL

[cuteus]

This is what happens when things are quoted out of context. and presented as factual. For those truly interested how that post came about...you will have to do your own reading and draw conclussions based on YOUR reading.  If you are not interested,  reserve full judgement....
boy, we have come a  long way in the paranoia department...me included...but must keep my caution and reasoning active until proof, not conjecture, is presented. That one does not qualify, Bystand. good try.

[Honey15637]

Awwww sorry to hear that you worked today! And Gent...I'm very impressed that he helped raise a barn today!  You must be a true Indiana Gal!  Well Gal,,If you lived a tad closer,,,I would be serving you guys barbeque today!!  Is it true,,Food is tasting better now off tx??  I have heard many say that...Take Care Lady and don't work so hard!

[bystander2002]

Chevy-- Yes its awful sweet. lol

Honey-- ;)

Cuteus- I noticed your in charge of distribution. lol

[silvermoon]

I have absolutely HAD IT with some of you on this site.  Chev, you mentioned that Cindy and Phil might like to have some information?? Well, guess what.. They are going to get some!! I have put up with ALL I am going to from certain nasty, lying hateful people on this sight!
IN REALITY< the ONLY people who should have posted on this thread are those that it pertained to, but ibstead, there is all this other garbage on the thread.
I have posted one of the RULES fo conduct for this sightm which several of you have broken over and over, and I am finally going to make them aware, and legal action will be taken.  SLANDER and LIBEL with malicious intenet are PROSECUTABLE.  You bunch of vicious gossiping vipers will not stop until you cause someone's death, which you have nearly done more than once!
<<< "Posting material that is unlawful, obscene, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by Med Help in its sole discretion; ">>>
   I am NOT responsible for your shortcomings, or for your being such deceitful , underhanded people that you are suspicious of everyone else.  THAT is YOUR problem.   I NEVER lie nor do I set out to attack and destroy anyone, as several of you have done.
  I have let your nasty snipes and comments go until now, but I have had it!
I stated VERY CLEARLY several times why I posted this, and why I suggested a concentrated collection of info,, and one of the resons is garbage just like what you ahve just done.. NO ONE wants to have to sift thru your nastiness to find facts on this illness... there should also be NO NEED for people to have to retype their info over and over and over to share it with others.
If you people were really interested in what this site is FOR, you'd understand that!