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 (inflammation) 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.

[mikesimon]

Congratulations on your transplant and beating HCC. I was transplanted in June 2000. In addition to me there are a few transplant recipients here. I can think of Sallyo, KCMike, Jeff and BThompson  there may be a couple I am forgetting. I believe all of them are treating currently. I treated and finally achieved SVR in 2004. I treated 3 times and the first 2 were with inadequate ribavirin doses - in my opinion. The 3rd try I treated with full weight based dose of ribavirin and Pegasys. I became undetectable at week 11 or 12 and treated for a total of 73 weeks with no dose reductions or missed doses. My type is 1b. Without looking I seem to recall that the figures on transplants reaching SVR is lower than in the general population but I think the numbers are a reflection in part of tolerability issues - people stop treatment. I believe bone marrow suppression can be more of an issue in the transplant population and that is one factor which likely contributes the issue of tolerability. If I had to guess I would say that roughly 33% of transplants who start TX achieve SVR. If my number is proximately I am sure that the SVR number would be significantly higher if you take out those who stopped treatment early. Of course,  genotype and viral load have an influence on your odds of success.
I have to run now but I wish you good luck and an easy treatment.
Mike

[charm27]

I wish you all the luck. FIngers crossed.

Charm

[IAmTheWalrus]

Congratulations to you, too. 7.5 years post transplant and achieved SVR!

Thanks so much for your response. It is very encouraging. I am at full dose of Riba and have not missed a dose or reduced despite some rash problems. Though my white and red counts are low, they are not problematic. I am treating depression and it seems to be working, so I am optimistic of being able to tolerate the treatment.

I think current protocol would put me on a 72 week tx if I am UND at 24, but my docs don't tell me anything.

Charm: Thanks for the thoughts. Best to you, also.

It is great to hear from people in similar situations. Hope to hear from you and others in the future.

Thanks,
Brent (Walrus)

[IAmTheWalrus]

Thank you.
I know your question was for Mike, but I was told that the TX was much less effective in a liver that is compromised by cirhosis and much more dangerous. I don't know shy.

Hugs2U2,
Brent.

[wyntre9]

Thanks for sharing your 'cautionary' tale about the pitfalls of NOT treating quickly.

That's a major point of discussion on Forum for those newly diagnosed; whether to treat now or wait for the new drugs like teleprevir.

The fact is that nobody knows how rapidly or slowly the virus will progress.

What is your genotype?  I'm not sure if that's relevant with transplant patients but I do know the CW for other heppers is that those who reach UND by week 24 should extend for 72 weeks.

Again, I'm not sure if that' true  in your situation.

Best of luck and hoping you get UND by 24.

wyntre:  

[mikesimon]

Response to treatment can change after transplant - responders can become non responders and non responders can become responders. I seem to recall sending you that article but if not tell me and I will dig it up for you. No, it is not easy but, when I treated post transplant treatment was not standard protocol and there was more concern about the possibility of triggering organ rejection with TX so doctors approached this with extreme caution. Though rejection can be an issue my understanding is that it is not as common as was formerly suspected. Bone marrow suppression is an issue and that could possibly explain my surgeon's reluctance to treat me with full doses of ribavirin. This was in 2000 and within 2 months of my transplant and that was definitely not standard protocol for transplant recipients. I believe that had I treated with full dose ribavirin and Pegasys the second time (at the time ofvmy first TX Peg was not yet available so I treated with regular interferon and I injected 3 million units thrice weekly) I would have achieved SVR and I think that might have eventuated with less than 73 weeks of treatment. It was my decision to extend my treatment and my surgeon suggested I stop sooner than I did and perhaps I could have and still achieved the same result. The point I am trying to make is that my experience should only be interpreted as evidence that type1 post transplants with a relatively high VL (6.85 million after relapse and 3.5 million at the start of my 3rd TX) can achieve SVR. My treatment length and the number of times I treated are tied to my particular circumstances and should not be assumed to be applicable to other transplant recipients. If I were you and I was convinced that a liver transplant would provide Nick with the best opportunity for a good life I would not consume myself with worry about post transplant treatment. You and he will cross that bridge when you get to it. And as my Mother always told me: Don't borrow trouble Elaine - well, she called me Mike but the message is the same. I wholeheartedly believe that we have to be aggressive and extremely optimistic when we are faced with something like this. I see absolutely no downside to optimism Elaine. After all if I did it it cannot be that hard to do. Another thing my Mother always said to me was " Son, look on the bright side. Good luck, Mike

[IAmTheWalrus]

I have geno 1A. I had seen a few posts about waiting or treating. I couldn't help think that if I had treated when I was diagnosed, it could have saved me a lot of trauma of a transplant. The doc said that the disease almost never progresses as fast and suddenly as mine did. But it did. I think docs would watch it a little closer today.

As far as treating after disease progresses, I also have read that Peg/Riba tx can slow or reverse some disease (fibrosis) and that that is now a consideration for tx even if VR is not the goal.

Elaine: Are you listed for TP? I think being on the list was harder than the actual TP. It is a lot of stress. I hope you have people you can depend upon. FWIW, I felt pretty good post TP until the HCV reared in an agressive way. Best wishes to you also.

Thanks all,
Brent

[wyntre9]

Elaine,

I just don't know how to tell you how very sorry I am that there hasn't yet been a solution for Nick but there will be.  I just feel it.  I have been reading more about the new drugs and they will be available within a couple of years.  Medicine is advancing so quickly that I'm sure something will  help Nick very soon.

Even the recent news about stem cell breakthroughs has to give you hope.

It must be so hard on you to see your strong young son suffer as he does but that he is young is in his favor for eventually responding to a treatment that will cure him.

Don't give up on him or yourself, Elaine.

wyn

[Trish77]

Thank you for sharing your cautionary tale. That resonated with me very much. I fervently hope you achieve SVR this time around.  Best wishes to you.

Trish

[Forseegood]

as a Beatlemaniac from way back, sure do love your name...just hearty congrats that you are on your way, and best of luck with this...though I do think your doctor was remiss in telling  you not to get another biopsy for another 5 years, to me that's far too long to wait another biopsy...anyway, just wishing you the best of luck with this...

[IAmTheWalrus]

My thoughts and prayers will be with you and Nick. I wish I could do something to help. Looks like you have a lot of support here. Hope you'll add me to the list of people that care.

Brent

[IAmTheWalrus]

Thanks for the support and well wishes. It is great to know there is someone to talk to that understands. Bless you all.

Brent

[ladybug52]

Thanks for sharing your story. I will watch your story to see how you do. I'm glad you found this site, I can't believe you've already had a transplant and are on week 21 of tx!
You sound very smart and warm-hearted, I hope you have the support of family and friends. Treatment is kind of a lonely road. Your story is inspiring to both those who have less adversity to deal with, and to those who are suffering with painful sides.
I admire your spirit and courage.
Bug

[Forseegood]

I'm sure you realize that all of us are thinking of you and youre wonderful son...

[IAmTheWalrus]

Ladybug: Thanks for the nice thoughts. My head is getting bigger! I'm just glad to help and get help here. I'll be happy to post progress here and see how others are doing. I'm a little new at posting and don't get a lot of time online. I'm still working and that is taking most of my energies.

Forseegood: Good to hear from another Beatles fan.

Everyone: THANKS SO MUCH for making me feel welcome here. I really look forward to keeping in touch.

[Liz50]

Love you Babe! (I can say that 'cause I am the walrus' wife!! He is one tough cookie and I would know!) I am proud of him for sticking it out with the waiitng for TP, the TP itself, the resurgence of the HCV and now the TX. The last two years have really been the pits...but we are so lucky & blessed. Wish we could post pictures of our great support network. I don't think that w/o them we could do this. I'm glad he found this site. You guys are great.

[kcmike]

I didn't read all of the post on this thread yet, but the rate of progression made me jump in now!  I had a hitting 50 (years old) physical exam in 1999 including a colonoscopy and the gastro guy didn't find the HCV.  2 years later my wife passed with Ovarian Cancer.  I already was a functional alcoholic before she died, but I became a full time drinker after she passed.  I was working in Mexico of 2002 when I first began to notice the ascites.  Another gastro in St. Louis saw me in June '02.  He referred me to a Hep Dr. in St. Louis who in September '02 told me I was stage 3.  In March '03 he told me I was ESLD and would need a transplant. That's 6 months folks!!! In April '03 varicies came next.  In September '03, yes I put things off, I went to KC for a second opinion.  I waited the mandatory 1 year for drinkers before I could get listed.  The TP finally came in January '05.

Fortunately the rise in my meld score was a slow steady progression and I made through the mandatory drug and alcohol testing.  If you want to roll the dice go to a Casino.

My TP doc barely commented about my alt/ast or my VL at my 6 months post tp appointment.  However, at my 1 year appointment he convinced me to tx for the same reasons mikesimon and
others above commented.  Genotype, VL & Fibrosis were the scientific reasons, but I also felt emotionally I wanted to finish what I started.  The jouney began in March '02 and now 5 and a half years later I am 8 weeks post tx.  I was UND at 4 weeks post tx.  My next will probably be at 12 weeks.  mikesimon is right on about the statistics.  The drop out rate for TP naive is lower than us.
If you just EVR and complete tx while <80% compliant you should have a better than 50% chance of SVR.  

kcmike

[mikesimon]

I am feel so happy that you have good results at 4 weeks post TX. I probably told you this more than once but after my second TX, during which I became undetectable late and stopped too quickly, I relapsed and it showed dramatically only 2.5 weeks after stopping. I went from < 5 IU/ml to 6.85 million IU/ml, and that was the highest VL I have ever had. That was only 2 1/2 weeks after stopping TX so I am very optimistic about you and SVR. I wish you the very best Kcmike. Good luck and please keep us posted.
Mike

[kcmike]

I have often wanted to jump in and "caution" folks regarding being passive towards tx.  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.  My INR/PT was to high for core needle biopsy so my docs only had US/CT images to go by.  

You are very fortunate to be free of the HCC.  Did you have a biopsy PT?  I did at 1year PT and it was totally unremarkable except mild portal inflammation.  Even so my TP team had little difficulty talking me into tx.  I certainly did not want to go down the waiting list route again.

Good for you that tx sides sound doable at 21 weeks.  My tx was for 48 weeks, gt-1b, and I struggled through everyday of work without missing anytime.  I won't say I had my doubts, but I was out of work for a year and a half and was trying to rebuild my resume.  

Keep us informed on your progress and stay tuned to this forum.  I found this forum around week 16 of tx and gleaned alot of good info to help me make the right decision.

kcmike

[IAmTheWalrus]

I am really sorry to hear what you've been through. I avoided much suffering by going to the top of the list with the HCC exception points, so I never got as sick with jaundice, ascites, etc. I am thankful for that. I am not sure I could have handled it.

As for your quick clearance: congrats! I used to think geno 1 never cleared that quickly. I am glad to hear that I stand a 50% chance. That is kind of what I was thinking but didn't know how much to discount because of the TP.

Like you were, I am determined to beat this disease. I think having the second chance with a transplant is a great motivator. I feel like I need the have the determination for two people; one for me and one for my donor.

Thanks for sharing your story. I have a lot going for me in the way of family support and good health generally. Now I can include the folks on this site as well. I feel like I cannot fail!

Thanks,
Brent

[kcmike]

Thanks mike for the positive thoughts of SVR.  Yes I believe you did mention you had EVR, but not UND by week 12.  Interesting that it came back so fast and hard!  My 4 week post tx VL test was a <5 IU's and I just talked today to my TP nurse regarding my next PCR and sensitivity.  We decided to go with a <50 as if it's back it will be high.  BTW she also told me that 8 weeks post tx alt/ast were 19/23 which I take very positive (drop dead beautiful).

Now that tx is over I find that I post and answer more than when I was in tx!  Imagine that.  I'll be back to check on everyone and to support others w/TP issues.  You multiple tx guys and gals have the best info for the newbies and I'll leave most of that to you pros.

kcmike

[IAmTheWalrus]

Forgot to answer your astute question about the biopsy. This is the part of the story I shortened. But here's the longer version; remember you asked ;)  ...

My tumor was in the caudate lobe and located right next to the IVC. That is why the surgeons would not attempt to remove it. They didn't even want to biopsy it. At the TP center they recommended an intervention radiologist who could/would attempt this. The tissue sample came back negative, but the docs and surgeons said that they could not be sure the needle was in the right place. They said that the biopsy was the gold standard for identifying malignancy but wasn't as reliable in ruling it out. They did more types of scans (PET, etc.) and even sent images out to some top oncologist in SF. All together there were 3 surgeons, 5 GE docs, and several radiologists who were sure this was HCC in spite of the biopsy. There was one liver doc at the TP clinic that thought it might not be HCC.  But nobody could recommend that I wait and see. I agreed that I would be less troubled by a false positive HCC diagnosis than by a false negative one. If it  was HCC and it spread, I would be ineligible for the TP (couldn't possibly live with that as a likely result).

Anyway, a lot of people were amazed that the post TP path turned up negative. But this turns out to be a blessing because I got the TP before getting as ill as I would have waiting for my lab MELD to get over 25 (that's about the scores that were TP's in 2006. Plus, I dodged a real bullet for my post TP prognosis by having a clean path on the tumor. In any case, I couldn't have undergone Tx with my old liver at that point anyway. Already stage IV cirhossis.

Now you know about as much about my TP as I do! You probably see why I gave a shorter version originally. My main point for the details at all, had more to do with how my disease progressed from  "mild/moderate inflamation (inflammation)" to ESLD between doctor visits. This nullified the opportunity to treat me without TP. I don't really blame the doc. I think that was SOP then: no fibrosis + geno 1 = no Tx.

Tell me how you feel now that you're done with the TP and SVR. That's what I need to hear :)

Best wishes!
- Brent

[IAmTheWalrus]

kcmike: OMG, I totally misunderstood your biopsy question! I am a little foggy and slow, but I get it now. You meant Post Transplant biopsy! Yes, I had a biopsy at around 8 months post TP which confirmed that the rising liver functions were due to HCV inflamation (inflammation). I can't tell you how awful it makes me feel that this old disease is damaging the perfect, new liver I was given. It's a little like seeing a vintage Jag go through an acid car wash, only much worse.

Mike, Win & others: you seem to have a really good handle on everyone's story. You must be very dedicated to this forum. I appreciate your expertise and willingness to share the same with me and others. Like kcmike says, you're the experts. Thanks :)

- Brent

[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

[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]

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

[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.

[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

[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

[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.

[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]

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

[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]

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]

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]

What about going to see HR again for fibroscan?

[sfbaygirl]

I am thinking that would be a good idea too!  

[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]

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!

[Forseegood]

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

[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.

[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.  

[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

[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]

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 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

[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