liver transplant evalution

[ejoli]

Hey all,    I finished the liver transplant evalution. It was a whole week of tests and then had to go back for a heart cath.(which was fine)   I don't believe that I will be put on the list at this time. I had to complete it so I could treat again since  I have chirosis(sp)   The Doctors up there think that I will need a transplant at some point even if I  get SVR. That I'll better off having a transplant if I get rid of the virus. This is the first I've heard this. I thought that if I got rid of the virus that I would just live a liver friendly life with my own liver.  I'm sure that I read about someone here that SVR'd with chirosis and isn't going to need a transplant.  I just keep getting all the breaks huh?   -Libby

[mikesimon]

It would be better if you were SVR before you were transplanted if it comes to a transplant. People can live a long time with cirrhosis if it's not decompensated. And successful treatment (SVR) has been associated with an improvement in liver histology so if you cleared your liver might be in better shape. I got a transplant in 2000 and I was very fortunate to get one but I always advise people to keep their own parts if at all possible.
Good luck,
Mike

[FlGuy]

Even if you get the transplant before SVR you'll still need treatment afterwards.  And,as Mike has discussed in the past, post transplant treament is a very tenous undertaking.

[ejoli]

Yes, I know that if I have a transplant that I still would have the virus.  I had hoped that if I got rid of the virus I wouldn't need a transplant.  The Doctor wanted me evalutated in case my liver went bad during tx. Now they are saying that I would probably need a transplant anyway at some point. Also, they put my odds of getting SVR when I have cirohosis at only 15-18%. I thought tx would also maybe protect my liver from getting worse. Who knows. It's all very confusing....          -Libby

[FlGuy]

There are many people who tx, with various stages of cirrhosis, that go on to achieve svr.  There are several negative predictors going into tx (age, race, weight, liver condition, general health) but an expereinced doc who is willing to be as aggressive as a patient is willing can help narrow some gaps.  I would think that trying to hang on to the manufacturers orginal equipment would be a good motivator for both.  Good luck libby.  And yeah, it is all very confusing/.

[foofighter]

I see in your profile that you are in the second stage of cirrhosis. Mike, is that a reasonable conversation for her doctors to have with her at this point?

Or have they moved you up to a stage 3? I know that Child Pugh is a three step Class system, but it seems there are different grading systems around. Is that what your doc's are using?

Also, here is a video of a lecture that is absolutely fantastic for anyone with cirrhosis caused by HCV (I think Hector posted this a while back). And it is especiallly pertinent in your situation:

http://tinyurl.com/3ncz9g

I'm sorry that you are hearing this and also that you are not clear on what is going on. Keep us in the loop.

Foo

[mikesimon]

I didn't read her profile but yes, if Libby is indeed at stage 2, a discussion of transplantation does seem a bit premature. Perhaps she has progressed since posting her profile or maybe there are other factors at play but generally speaking, stage 2 doesn't typically trigger a transplant discussion.
Mike

[frijole]

I am in shock.  When I read your title the blood drained from my face.  I hope this is just the protocol for your retreating and they are wrong about the transplant.  You went through heck that first time.  What are your treatment options.  Your liver is not decompensated.  That's good.  Any chance of getting into the upcoming Vertex trial for relapsers?  You remember Candoman, don't you?  I think he is getting ready do to the Boceprevir Trial (at U of Indiana, I think)  Where are you - Kansas?  

Here is the Boceprevir trial.  I know it does not give sites and says not recruiting but they are actively recruiting right now.  Maybe you can talk with your doctor.

http://www.clinicaltrials.gov/ct2/show/NCT00708500?term=boceprevir&rank=2


Here is the Vertex trial.   It also does not show locations, but I have a clinic date set for December about the 16th in Dallas and may get this one.

  http://www.clinicaltrials.gov/ct2/show/NCT00703118?term=VERTEX&recr=Open&rank=7&show_locs=Y#locn

I will pm you
frijole

[can-do-man]

Hi there, your post title caught my eye. I was also dx by bx as stage 4 grade 2 three years ago. Have tx once and relapsed. Hoping to get in the boceprevir trial for relapsers soon. While me and my hepo has "talked" about transplant thats as far as its got.

By just reading you post and not knowing anything else it sounds like your doctor is getting ahead of himself. My hepo feels strongly that if i get svr and take care of my liver that i will NOT need a transplant...

Wishing you the very best going forward.

cando

[ejoli]

Hi Kathy, My Dr. wanted me evaluted before tx again just in case. If my liver were to get suddenly worse on tx I'd be ready to go.You know the tx didn't help my liver at all last time so they're just covering all my bases.  I did learn about some problems with portal hypertenion and varies. I also have edima and other swelling. I just want to treat again and feel like this is taking forever.  But I am not being put on the list at this time. My meld is only 11. I saw about 10 different Dr.s and they all say something different. I'm going to tx for 72 weeks this time.  I'm still working full time and plan to continue. It must be like the pain of childbirth but I don't remember tx being that bad. It's kind of a blur....                           Later,   -Libby

[frijole]

I know what you mean about mean about forgetting the pain of tx.  It kind of washes away, doesn't it.  I do remember long evenings on the couch unable to lift a finger though.  72 weeks is your best option for now.  I agree.  I am still at a stage 1-2, no cirrhosis so have time to wait.  I will do the trial if it will fit into my schedule.  That sounds kind of funky, but I have to fly to Dallas (or a 6 hour drive one way) and for the first month that means every week, then once a month after that.  So, I can't do the once a week part during my busy time at work.  Therefore, if the trial must start in January, it will start without me.  Also the issue of Procrit --  Vertex is still not allowing Procrit.  They do the dose reducing instead, and I just won't do that.  So those 2 issues may prevent me from doing the trial.


Do you have any idea when your start date might be?  
Kathy

[ejoli]

  Nope, don't even know who I'll be treating with. The Dr.s up there want me to treat there because I could decompensate real quickly, but the "coordinator" says that they are so booked up and short of staff that it would be a while. The infectious disease Dr. wants me to start right away because my viral load is low right now.(440,000)  I may just have to treat here with the Dr. I had last time. The coordinator is supposed to call me back today. I have an appointment with the Dr. here on Oct. 15th.   I would like to tx with people who really know what they are doing but am not willing to wait anymore. I've been off tx for a year.     I know it's a cluster.....                    -Libby

[can-do-man]

Hi again, kinda courious on the transplant evalution tests. Did they say how long they would be good for? Like if someone needed a transplant a year after the tests, would they have to redo them all over again?

cando

[ejoli]

Hey cando,  Some of the tests would have to be repeated if it's longer than 2-3 years. Of course they would redo all the bloodwork, ct scan, and ultrasound. The heart and lung tests are good for 3 years. I don't think I'll need another colonoscopy or endoscopy unless symptomatic. You wouldn't believe all the tests they did that probably won't have to be repeated.  Hopefully I'll be SVR this time around and it won't matter.   -Libby

[orphanedhawk]

My heptologist said if I cleared, my liver would heal itself. And I do have cirrhosis, decompensated.  

There is a doctor at UCSF doing research on giving hepC patients 12weeks of tx prior to transplant. The idea is to knock out the virus before getting a new liver.
Good Luck.                           OH

[Texas714]

My dr. said if I am clear at 6 months post tx, I have a 1 in 3 shot at my liver improving a bit.  I also have cirrhosis.  
In the begining he postponed my tx for a couple of weeks because he was going on vacation and did not want me to start tx unless he was in town.  I think they might be a little more cautious when they are tx someone with cirrhosis.  He told me all kinds of things to watch for when my tx started.  I had to go in often also.  When I made it thru the first few weeks he seemed more relaxed about my tx.  He also told me he could get me on a tp list if need be but my tx went well and he has not said anything else about the tp list...so far...
Good Luck to you with your next tx.

[ejoli]

So are you finished with your tx?  Was it rougher once you had cirrhosis?   I hope to start tx again next month. I'll use pegatron this time around and go for 72 weeks if all goes well.    Good Luck to you also...         -Libby

[Texas714]

I don't know if it is rougher with or without cirrhosis.  When I found out I had this, I found out I had cirrhosis.  Tx went very well, I think.  I made it.  Finished up about 4 weeks ago and am now waiting on my test results.  I have my fingers crossed and am hoping for the best.
Good Luck to you too!