HCV Transplant

[IAmTheWalrus]

Anyone with transplant doing Tx? I am new to this forum.

I was diagnosed with HCV genotype 1a in 1999. After other tests and a biopsy I was told that there was only mild to moderate inflamation and that I would proably die of old age with this virus. I was told to have my liver panel tested yearly and to return for another biopsy in about 5 years. Five years later, my biopsy/blood results showed that my liver was now in end-stage cirhosis and I could not be treated. But the bad news was that the AFP levels indicated HCC. Sure enough, subsequent MRI and CAT indicated a tumor. To shorten the story, the tumor was inoperable but small enough that I landed on the transplant list with a high MELD score.

I offer this as a cautionary tale for anyone who has the disease but doesn't show much disease progression and is thinking of not needing Tx.. Apparently after being under control for decades (I most likely got the disease around 1970), the disease can suddenly progress very rapidly.

In an ironic twist, post txplnt pathology showed no malignancy in the tumor! Good news is I don't have to be too concerned about HCC having spread.

I am a year post-transplant now and having problem with HCV resurgence and am in the 21st week of Pegasys and Ribavirin. No RVR but achieved EVR (but not UND). I am in excellent health other than being immunosupressed and having HCV.

Anyone comment on what chance I have for SVR? I am praying for UND at 24 weeks.

[Lady Lauri]

After just sending you a reply asking about your having a TP....I am glad this popped back up as  I'd missed, or forget:} this post back in Nov. Glad to read all your info. and understand better on the TP, tx-ing, your struggle. All of you with TP's, glad to hear more details . In so many here you get a bit lost on who's been thru what.
  Yours is a very good example of waiting, the risk and agree with forsee on the need for bx more often with Hep because of how the progression differs so much in each case. Very glad it turned out not a malignant tumor.
  Your all just amazing. I know 'we do what we gotta do' when something comes down on you-thru my sister also, but keeping the great attitudes, humor after so much is the amazing part. Especially when I hear people whine and moan over trivial things.
  You have my prayers for SVR.

Child......you are also an amazing woman, mother and so helpful, kind, thoughtful with all you have to deal with. You and Nick stay in my prayers. I wish we could 'donate' our UND, SVR!

  Getting teary and grateful in my own situation.......gotta go :}

                                                                                         LL

[IAmTheWalrus]

I realized that you were in US some time after I posted. I don't know why I was thinking you were in Canada, except I had been reading some of Trish's posts.

I can't tell you how bad I feel about  what Nick is suffering. I was so fortunate to not get so sick before transplant. I feel terrible when I see others suffering what I escaped, especially when it is by young people. But I wouldn't wish a HCC diagnosis on anyone.

Many do not get a high enough MELD to receive transplant until they are in near total liver failure. On the other hand, the available donor liver goes down the MELD list if the surgeon (for the higher MELD patient) refuses the liver due to tissue match issues or if the patient is not able to receive the transplant at that moment.

Check out the site I posted and you will find the rules that govern the designation for donor livers. You will note that donor livers are matched by blood type, then by exceptionally high MELDs within the Region, then by highest MELD at the local area. You can look at having Nick listed at multiple transplant centers (as long as you can get to the other centers within, I think, 3 hours. I have known some people to have a charter jet available for transport when the call comes. Others have moved to a location for listing at a center where it looks like they have a better chance of getting selected with a lower MELD.

I don't know if any of these ideas will be of help or not, but I wanted to inform you of what I know and have experienced. If he achieves SVR, maybe he won't need the transplant. I'll be praying for you and Nick.

Brent

[sfbaygirl]

Sounds like he has trouble with interferon like I do b/c of the bleeds.  That is one reason I am afraid to try it again. It all involves interferon.  Can't get away from it if you want to reach SVR.    What is factor VIII for bleeds?  As I get them too, wondering..

Hugs,  Linda

[IAmTheWalrus]

I assume that @16 is the MELD score. The MELD is actually an attempt to predict life expectancy in a way that is uniform (the higher the score, the shorter the life expectancy) . In the US, there aren't very many transplants done below about 20. They typically didn't bother listing anyone below 10-15. I was at 28 when I got the call, but there was a serious shortage of O+ organs while I was on the list. Typically, back then anyway, most patients were getting transplanted in the low 20's. Without the HCC diagnosis, I think my MELD would have been around 12.

During the time I was on the waiting list, I examined the data from the transplant centers to see what my chances were, etc. This data is compiled and made quite easy to access by UNOS. Check the link:

http://www.unos.org/data/

Elaine, I know you are in Canada and the data pertains to the US, but there may be some useful information there for reference. For anyone on the list in the US, studying and monitoring data on this site is necessary IMHO. You can get data for individual states and regions. There actually can be an advantage to where in the US you are listed and what is going on there at the time. I was almost ready to give up in Utah and move to Connecticut for a while. This led me to get more active with my transplant clinic and press for answers. A valuable site and good reading for anyone interested in the organ donation/transplant process.

[sfbaygirl]

Wow, he is so close though. I sure hope things get better for him!  That must be tough.  He is still on tx?  

Hugs to you!
Linda

[sfbaygirl]

Yesterday I heard Edwards, on the campaign trail talking about liver transplants. He was really angry about someone not making it to transplant.  Organ donation is so important. I certainly would, but of course nobody would want my organs! We need to  raise awareness. It certainly won't hurt someone who is dying.  

[IAmTheWalrus]

Wow! I am blown away by the comments here. I didn't think anyone was still reading this post. So many of your comments mimic my own feelings. Especially the part about "..they're the ones who went to medical school ..."  That is totally how I have felt throughout this experience. Thanks for the support Mike, MyOwn, sfbaygirl, nygirl, Foreseegood.

Child24Angel - best of luck to you and Nick. Hollerback if there is anything I can do to help.

Mike - looks like you and I got much the same advice. I did the same thing when I was advised not to treat. Wish I had the chance to do that over and get more opinions. I guess we both learned a lesson the hard way. Your surgeon nailed it though, "Don't trust anyone ..". Sounds like you were on the TP track before you found out about the lesion. In my case, it was all at the same time. Best wishes to you.

It is a sobering statistic that about 10% of those on the transplant waiting list die waiting every year. This is predicted to get worse in the future. Anything to raise awareness for organ donation is desperately needed. Many do not become donors because of ignorance or superstition. It is a shame, because donation really saves lives.

[Forseegood]

here's hoping you get your undie as well...youre kicking them down for sure! the very best to you!

[sfbaygirl]

Glad to hear you are post TP.  I was speaking with my hepatogist about maintanence drugs a few weeks ago. After the AASLD conf in Boston he claims that they are not a good way to go.  Dunno all of your situation, but I would ask or check this out yourself!  best wishes to you!

[sallyo]

Congrats on your TP.  I will be three years post tp this month.  My vl was sky high after the surgery, no help to the erourmous amount ot steroids I was given.  Took SOC 4 months post and achceived normal enymes and vl < 615.  I then had riboviran induced anemia requiring blood transfusion even on a dose of only 200/day. The enymes and VL stayed low after stopping treating for 4 months and then the virus began to show up again.  I am now on a maintenance dose of Peg-intron 30mcg/week and no riba.  Ensmyes are rising and vl is too.  Not sure what the next step will be.
  Being post TP is a life time of meds and labs.  Please stay on course and know that it is all worth it.  I so appreciate each day

[sfbaygirl]

I am thinking that would be a good idea too!  

[Myown]

What about going to see HR again for fibroscan?

[sfbaygirl]

Kalio did SVR, as a Geno 3, she was told she could tx for 24 weeks. It failed and she jumped back on tx. By this time she was stage 3. I was with her at the fibroscan and saw her liver.  She did progress quickly. That doesn't mean all of us do.  I think I need another look.  Just called my Dr. about my Fibosure test I took a few weeks ago. The stupid lab says they can't give me the results. My Dr. signed I could get them, so now I am calling him when they get back from lunch.  Wish I wasn't so fatigued and on top of everything, but I am not.  Perhaps I need a new drug.....isn't that a song? lol
Hugs, Linda

[Myown]

Yeah, thats why I tx too. I want it out. Didn't I read that Kalio had progressed quickly too. I know she is svr now (thank God) but I think I recently read where her stages increased rapidly prior to tx?

[sfbaygirl]

Wow.  Just read this thread and now am totally understanding of why you are against watch and wait.  I am afraid of the interferon, as you know. This has opened my eyes to the "stick a fork in me, I am done" approach.  All the stories of TP has opened my eyes.  My best friend and business partner died of HCV  with liver cancer waiting for transplant, about the same time you had one. There is a 2% chance of us getting to the point of cancer, I have read. Maybe that has been updated since I read it.  

Geez,  I am 1a, stage 1, feel like cr@p and not sure my stage at this moment. Perhaps a new fibroscan would help.  Yuck!  I sure am glad you all got TP's and  that is a great thing.  My friend wasn't so lucky.  Too bad more people don't donate organs.  Elaine,  I had no idea Nick had progressed to the list.  My heart goes out to you!  you are such a special person, I  know Nick must be too.  Sorry I missed this!

Thanks for all the stories.  As a relapser, I need to do something, but not sure when. At the moment I am waiting and watching. I think I need to watch a little better. My UCSF hep Dr, says he doesn't recommend txing now. my husband would probably kill me if I did. I am going to work on these supplement HR recommends and see my Dr. sooner than I planned...did get a fibrosure that I haven't gotten the results for yet..

Thanks and Hugs to you all!
Linda

[Myown]

No joke!  It sure makes you realize that with every single doctor you go to it's totally best to check it out for yourself big time.  I would have had no idea just HOW important it is and it ticks me off too to say the least.
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Yeah its crazy. Its no wonder alot these old people that live alone die at the hands of some of these doctors. Most grandma's that live alone dont' google or even know what that means. If you asked them they would probably say they google after they brush their teeth. lol

[nygirl7]

"They are the ones who went to medical school for this stuff, why do we have to be continully turning pages or hitting 'google' I should say. "
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No joke!  It sure makes you realize that with every single doctor you go to it's totally best to check it out for yourself big time.  I would have had no idea just HOW important it is and it ticks me off too to say the least.  

I was finally just able to convince my dad that he needed to see a specialist for his cancer - he was just going to his regular old doctor!!!!!!!!!!  I said please at least go get a second opinion!!!  Of course they were so impressed by the specialist mom and dad were kicking their own butts - and now his cancer is gone so...I lOVED saying "I told you so" in that case!

I wish for every wrong bit of advice - or archaic piece of advice we get we could take the money that THEY got paid back and keep it for ourselves! Honestly my GI was a lovely man but the education which he received from me on current hepC updates...I think he should have deducted and paid me in $$$ for!  That would have been Niiiiiiice!!!!!!!   ;) hahahaha

[Myown]

In hindsight I had rather bad medical advice pre-transplant but, like I said, I didn't know anything then so I didn't challenge anyone about anything. I've learned better since then
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It's really ashame or I should say it totally ticks me off that patients have to be so up on this disease in order to feel confident that the doctors are making the right choices or decisions concerning our health and life. We shouldn't have to constantly read 'the latest studies' and whatever else that comes along to insure we are getting the best care. They are the ones who went to medical school for this stuff, why do we have to be continully turning pages or hitting 'google' I should say.

Btw, that fellows website that you gave me - (Tony) - his story is different than mine so not much to compare. The backround colors make it difficult to read too. Thanks anyway.

[mikesimon]

No, I wouldn't have gotten a liver when I did if they hadn't suspected cancer. Had they been able to determine that the lesion was not cancerous they would have dropped me way back down the list. I was not offered treatment as an alternative. In 2000 the general consensus was that cirrhotics wouldn't benefit from treatment and, as a rule, they shouldn't treat. In hindsight I had rather bad medical advice pre-transplant but, like I said, I didn't know anything then so I didn't challenge anyone about anything. I've learned better since then. Mike

[nygirl7]

"Yes it took probably 30 years to progress to stage 3 for me, but from stage 3 to Cirhosis may have only taken 6 months.  "

That is one of the saddest facts of this disease - people,. even doctors, believing because it took so many years to get to stage 3 that it will take almost as long to get to cirhosis.  I wish to God I had known at stage 1 so I could have treated, whipped the disease and maybe luckily have regressed to have no liver damage.  As it is now as a stage 3 I will have to pray nothing happens to compound the situation even though I've gotten SVR.

Doctors DONT always give us the right advice unfortunately.  We all have to learn how to get second opinions for any situation that arises that we are not 100% positive about.  5 years until the next biopsy - simply LUDICROUS and I am SO SO SORRY that it took this lesson that you didn't deserve to learn that! I hope that "doctor" is now fully aware how BAD this do nothing attitude of his way.

Well WALRUS - thank you for such an important cautionary story.  It is a very important lesson for us all to remember - unfortunately more situations are bound to come up in life and I'd hate to ever be so "trusting" of any one individual over my life again.

Debby

[Myown]

After transplant pathology found no cancer in my liver.
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I always forget to ask you this. So in other words, your only reason for transplant was that they thought you had cancer? Or would they still have transplanted you if they were able to bx and find that you didn't have cancer?

So what I am asking is would it have been better (health wise) to keep your liver and go thru tx OR get a new liver and tx even if they knew there was no cancer. Just curious.

[mikesimon]

Yes, it seems as if we walked in each other's shoes. I don't recall being that upset about the lesion. I just assumed that I wasn't going to get well or get a liver so when they said "lesion" I was pretty numb. I wasn't the least bit scared when I got the call that they had a liver. I figured either I would die or be well. I was so uneducated that I thought transplantation would cure the HCV. I didn't know anything at all about any of this stuff - until the HCV recurred and then I started studying. About 2 days post transplant my surgeon told me not to trust anyone. I said "except you, right?" and he said "not even me". He was speaking the truth and it took me a while to realize just how true it was.
Happy New Year and I wish you the very best Brent.
Mike

[IAmTheWalrus]

I was back rereading this post and I see I didn't respond to the last two comments. I think sometimes am pretty brain dead!

Child24Angel: My MELD was 28 when I was transplanted (this was due to the points added because of the HCC diagnosis)

Mike: It didn't sink in the first time I read your comment, but that is an amazing coincidence. Even with the HCC points added, I had to wait six months. If it had really been malignant, I might not have lived that long.

[mikesimon]

This seems very coincidental but that is exactly the reason I got transplanted. During a routine scan a lesion was seen on my liver. I got the call while I was at my office. The woman said the word "lesion" and I said "do you mean cancer?". She said that where it was located it could not be biopsied. She told me to get a chest x-ray as soon as possible. I got it the next day and 3 days later she called again and said the x-ray was clear and I would be bumped up the list "big time". I asked what "big time" meant and she said I should have a beeper or cell phone with me at all times. This was around May 23rd and I got my first call that they had a liver Wednesday June 14th. The liver wasn't right for me and the surgeon told that I could wait and that they'd monitor/scan my liver monthly and that he was going to find me the perfect liver. 2 days later I got another call - they found the perfect liver. After transplant pathology found no cancer in my liver.  So we were both extremely lucky, it would appear. It's rather strange that we both got our livers that way.
Mike