end-stage liver disease

[sonbeach]

I have end-stage liver disease--cirrosis, with chronic hepatitis. As my disease becomes more and more debilitating, several friends and family memebers have offered to be live donors in order to help me. Besides blood type compatibility, are there any other areas of compatibility that should be tested or considered? I do not wish to waste anyone's time.

Thanks!

[Wasabi Pea]

Hey there,

I've been offline these past several weeks, and just stopped in to say hi and saw your post.  I'm really sorry to hear about your relapse.  How are you feeling?  I wish there were something I could do.  I know you must be so disappointed, but you sound like you're keeping a good attitude.

What's the next step?  Are you considering retreating?  I'm glad you're still posting.  It helps to hear from all the people who have achieved SVR...and done so after, two, three, even four times of treating.  I hope you consider this relapse only a delay in SVR.

Sending positive thoughts your way.

Angela

[donAlfonso]

The transplant center I am registered at (in NYC) will not perform a living donor tp  if the recipient's MELD score is over 25.  Don't know if this is universal.  I looked at the UNOS site, but it doesn't say.  Oh, I see that Mikesimon has given you the UNOS guidlines.  Statistically I believe that your odds are better with a LDTP than waiting for a cadaver donor, since in the US those needing new livers outnumber cadaver donors by about 3 to 1.  It's good to hear that you have people who care about you and are offering to help.  My surgeon says only 1 out of 5 potential donors will qualify, so the more you have who are willing to go through the screening process the better.  Best of luck to you.

Living donor tp's are definitely more dangerous to the donor than cadaver tp's.  (Sorry, couldn't help myself).  And yes, more dangerous to the donor than the donee. I haven't heard of any hospitals refusing to do them, but I have heard of hospitals being prevented from doing them after they have had a donor death until their progam meets federal standards, as the problems often are the result of poor post-op care. Living donor tp's are the future of tp medicine.

dA

[anise]

sonbeach, I wish you luck in your journey.  Hope all comes out well.  The others who already posted gave great advice.

new-sojourn, I followed the Jack Slater series in the Seattle Times.  I was praying that he would make it.  I didn't know he was a friend of yours.  I am so sorry that after all he went through that the new liver didn't hold up.

[BThompson4]

Sorry to hear about your diagnosis.

You said you had chronic hepatitis.  If you have hepatitis c and  end-stage liver disease (as opposed to "early" cirrhosis), you will likely get much, much sicker with virtually no hope of being cured and transplant is probably your only option.  Get referred to a transplant center in your area if you haven't already.  They will try to make your symptoms more tolerable and stablize you as much as possible until a liver can be found. Believe me, with the scarcity of livers, no doctor will recommend a transplant unless there is no other option.  Probably no doctor would recommend an interferon based treatment if you are end-stage.

I would not be concerned about the hep c killing your new liver quickly.  This happens probably less than 10 percent of the time.  Your chances of living at least five years after transplant, even with your uncured hep c, are around 80 per cent these days.

I was diagnosed with end-stage liver disease and hep c in 1999, got a liver in early 2001, and finally started treatment ten weeks ago.  Lots of people never get treatment before transplant because the hep c is discovered after the liver is too far gone to withstand treatment.  Lots of people get rid of the hep c after transplant, although it is generally difficult to do.

You can go to http://unos.org/ and find information on transplant programs in your area.

Good luck, and I will be praying for you.

[bobbyullc]

talked to ronnie yesterday and he was real up. first GOOD news in 3 years. also returned stefanies call but no answer. will call you later.
bobbyu

[anise]

You are always such a gentleman.  I appreciate your comment on not letting my spirits go down because of what happened to you.  However, I am prepared for any thing, yet hope for SVR.  My NP and doctor think chat rooms are a negative influence on Hep C patients.  I don't believe that, at least not here.  Wish I could get them to just come to this site.  They just might get some great information.  The depth of information here is incredible.  I have learned so much by reading the studies, etc.

Thanks again for reassuring me.  I think it is great that you are getting another PCR.  My prayers and thoughts are with you.

[Myown]

Sonbeach,
sorry to hear what you are going through, but there are people here who have gone through the mill, as you have heard and have come through when maybe it could have looked very doubtful for them. Many people will continue to give you good info to help in your decisions, I am not equipped to do so, but I will keep you in my prayers, as others here will also pray for you.

GrandOak...talk about answered prayers....so glad to hear things are looking up. Guess that proves that when "we look up"(from where my help cometh) things look up. Great news! Even when things get scary and our faith gets shaky(happens to me alot lately)thank God for the intercessors. I believe there are many on this forum, some might be just lurkers, but here and interceding just the same. Comforting to know.

In my prayers...

[GrandOak]

Perhaps your NP and doc are down on forums like this because the information often exchanged forces them to keep more abreast of what's changing.

I imagine it can be awkward and embarassing to have a patient informing the doc on new treatments and/or the state of evolving treatments, not to mention offering up alternative tx options the patient has learned and seems to know more about that the professional.

I can understand their concern that obtaining too much gloom, doom, and/or depressing news can perhaps have a negative effect on some, but I think alot of the hope, insights, and support shared here have an equal, if not more powerful, impact upon help us along in our struggles.  I also believe strongly that by being able to help others also aids greatly in lifting us up, which is why I beleive that in most recovery therapies such an emphasis is placed upon the value of service.

[cuteus]

My PCP wanted information about this forum and others i visited, so that he could forward it to other patients.  go figure.

[honey11]

SonBeach,,,Never give up hope and the number one question here,,,,Have you treated?  Like everyone said there is different stages and of course end stage is last stage and at that point,,,,you will be quite sick and what a nice family to come forward to offer to be doners!  That is a blessing within itself and only extensive bloodwork would be able to give you answers on who is a match.  Best Wishes!

MrBB!!! You relapsed??  I am so sorry and guess I totally missed where you told all.  You are such an important part of this forum and have helped so many! My prayers go out to you!!

[l-horn]

There is a pretty good forum for end stage liver disease at delphi.

http://forums.delphiforums.com/n/main.asp?webtag=liverfailure&nav=start&prettyurl=%2Fliverfailure

[Mister beagle bailey]

Just post to Mikesimon and he'll answer'

I'm doing ok, just a bit down after finding out I relapsed.  But I'll get through it.

Beagle

[mikesimon]

Lowering and weening off anti-rejection meds, if possible, is the approach at my center. It just gets very tricky with HCV SVRs. Yes, they raised it back up. All will be fine now - I hope. It's nice hearing from you. Take care. Mike

[Mister beagle bailey]

Please don't let what happened to me keep you from high spirits and the forum, I was just one of the unlucky ones.  Will redo another PCR on Wed. with a different lab.  It will probably be the same results but won't hurt to try.
This forum is a God sent and has helped many heppers.

Beagle

[mikesimon]

The primary threshold issues to depermine the suitability for a living donor transplant are basically the same as those for a  cadaver transplant.
1) blood type compatibility.
Type O can receive only type O
Type A can receive Type A or O
Type B can receive Type B or O
Type AB cab receiver Type A or B or O or AB
2) The donor shoud be the approximately same size and weight as (or slightly larger than) the recipient
3) The donor should be free from disease
  These are basic to living or cadaver transplants. The following are issues to be considered with a living donor:
1)The donor should be a relative (close or distant) or emotionally related to the recipient.
2)The donor must be competent and freely willing to donate.
3)The donor should be in good physical and mental health.
4)The decision to be a donor should be made after careful consideration and understanding the procedure, and accepting its risks and complications.
5)There should be no evidence of financial gain arising out of the donation.
6)Potential donors who are believed or known to be coerced must be excluded.
7)Donors need to have the ability and willingness to comply with follow-up.
8)All donors must have a primary care physician.
9)All donors must have insurance coverage.
I should also echo what has already been said and that is with advanced cirrhosis - decompensated - treatment is likely not an option for you. There are centers that will try to reduce your viral load using different approaches prior to transplantation, not in the hope of eradicating the virus but rather to get it down to a level that will be more amenable to treatment post transplant. Yes, the virus does recur universally post transplant and recent studies have shown that the rate of fibrosis progression is often faster than it is with native livers. So the HCV is something that will need to be addressed at some point and my experience is that the sooner post transplant the better.
If there is anything else I can help you with please post here and I'll get back to you.
Good luck. Mike

[mycoldfeet]

Do they have you on a mait dose of meds? There are more knowledgeable folks on the forum, but it sounds like a full liver tp is the way to go, with an aggressive hcv therapy post transplant, a partial or live liver transplant as far as I know is normally not an end stage proceedure, but if you had cleared with meds, it might be an option, sounds like you have a loving family to make such an offer. But if you have a very rare blood type or some other problem, a live liver tp may extend the time needed to find a suitable liver. I may be wrong but if I am some of the others here will set it straight.

[mikesimon]

Living donor transplants can be an appropriate procedure for ESLD.
With a decompensated cihhosis treatment, even maintenance treatment, may not be an option. There are approaches used just prior to the surgery with the goal being to reduce as low as possible the VL. To my knowledge living donor transplants are not used as a stop-gap measure or just to buy time until a cadaver liver becomes available. The goal is the same with living donor and cadaver donor transplants - replace the diseased liver with a healthy liver or a piece of a healthy liver. Mike

[scooz]

Hey,Mike how have you been,,Not to bad here..had that one tuff back surgery with all the complications last oct.and then another one to correct the complications on may 31st of this year.trying to get the csf leaked stopped..other then all the back problems doing great..least they stopped doing the liver biopsies and are just going by bloodwork..lft's are still perfect..something like 13-11 on the enzymes in of it..still undetected now going on year four so that is cool..Hope you are still doing a-ok..And are still negative..Guess were just to tuff..You take care,,

[mikesimon]

Despite the back problems your liver numbers look fantastic. Congratulations. You may not have seen it here but I ran into some problems once my immnosuppressive dose was dramaticall reduced. My enzymes started to elevate significantlt. Apparently there was a tiny bit of virus detected in the serum collected with my biopsy tissue sample and once my immune system got stimulated it began to try and eradicate the virus which for two years had not caused any problems. My numbers looked like yours until the dose reduction. So my dose was increased and I started low dose Peg and ribavirin. My numbers are now within normal range but high normal. I have never been detectable and I have had monthly Heptimax tests since 2003. A few days before my biopsy and a week after my biopsy I had undetectable Heptimax results as well. So the virus is at too low a level to appear in my serum and must be replicating very slowly. The biopsy showed 30 IU/ml so it's really a tiny amount. Good luck scooz. Mike

[anise]

Grandoak & Cuteus, you both have valid points.  Grandoak, my med team probably is not wanting me to be depressed, etc.  Yet, even before I treated my doctor tried to talk me out of the forums, saying that those people only look at the negative side.  Which by the way, I do not agree with on this forum.  She just never looked at this forum and probably heard negative things about them many years ago.

Cuteus, you have a great PCP to recommend this site.  I wonder if you were able to transmit what this site is all about and your PCP understood your explanations.  Sounds like I should get my act together and mention this site in depth.

[scooz]

No Mike,havent heard that about ya,,why did they lower your dose.Never heard of that..unles kidneys were becoming affected.My prograf levels usually stay about 4-5 area..Sounds like your at a real low limit on virus which is very good..did they raise your immuno drug back up?

[scooz]

Okay I see that they did raise your immuno back up..

[anise]

I am so glad that you are holding up.  I think of you often.  I told me NP about you last week and how depressed I was over it.  She has forbidden me to get on this forum until further notice.  Ha, ha, I tried but I can't stay away.  There is so much information on this site, etc.

[GrandOak]

What level of cirrhosis are you at?  I too am a stage 4, cirrhosis with Geno 1A initial viral load of 72 mil for HCV. As I understand it, there a different degrees at which cirrhosis has affected the liver.  What type of measurement is used or if such a measurement exists, I do not know.  I've talked with a couple of folks through recovery groups who also have cirrhosis, but after they began abstinence, the progression of the cirrhosis stopped.  I've even heard that in some rare cases, the liver may even repair itself if the affliction of cirrhosis is mild enough.

I mention this because despite having cirrhosis and HCV, it does not follow that the only alternative available is transplantation.  No, if your doc has diagnosed that transplantation is the only viable option avialable to you at this time, then who are we to disagree with a prognosis from someone with more training in, and hopefully more experience in dealing with, this disease and the damage it can inflict.  If you doubt your docs opinion, then I would highly recommend getting a second opinion, and you may want to give that stronger consideration if you are looking at a major operation such as liver transplantation.

I would point out that we are not doctors here, only patients who are considering tx, doing tx, post tx, non-responders, relapsers, or simply waiting for a better tx.  Thus, we can only offer ancedotes and/or testimonies to our own experiences in dealing with similar situations.

I certianly wish you well my friend on the path which you are considering traveling and hope you can find the aid, support, and place to express yourself here.


child24angel: I'm hanging in there.  Labs Thursday were better with Hgb jumping up to 10.  Still waiting iron and immature cell tests, but a .7 increase in Hgb over a two day period does make it look more promising.