Do you have a doctor? Your doctor is the best one to speak to about being listed. I hope one of the transplant patients here can give you more info. I know next to nothing about it other than you are listed when your liver "score" reaches a certain level.
You don't give any info, do you have Hep C?
Kalio is right, you'll need a referral from your primary care physician. The usual route as you become symptomatic is a trip to your PCP. After that doc runs some tests, he refers you to a Gastroenterologist (GI). If you are untreatable, then he will refer you to the Surgeons. The transplant team will do an evaluation and if necessary recommend you to the board.
Or if you are sick enough you will wind up in the ER. That should get you past the referral process.
Why do you ask. Have you been told that you are in End Stage Liver Disease (ESLD)? To what degree is your liver damage?
my brother is in icu after being diagnosis with hep c in december stage 4. We almost lost him this week lungs filled up. we are not on the transplant list currently but he has not been drinking for 10 months. can you direct me? brother is only 44
My husband went through a liver transplant in September 2006. It took a year to get over the transplant and they immediately started him on treatements for HCV which left him weak and basically in the bed for 8 months. Unfortunately, after the transplant HCV comes back and it comes back quicker and harder with the new liver. I hope your brother is able to receive a liver, but don't think that a tranplant is the answer. Life has many ups and downs with HCV. My husbands treatments did work while he was on them, but unfortunately, the HCV as reocuured. We are waitng for his doctors to review his case and decide what the next step will be. Most likely, the will begin treatments again and I can assure you these are not easy for the infected person, nor their family. This is a nasty virus and our only hope is for new and better drugs to help him live somewhat of a normal life.
The HCV recurrence can be quite virulent with some patients and often the transplanted liver is impacted faster and harder than a native liver would be. However transplant recipients can and do clear the disease (I did - but the current odds are around 30% I believe) but it can be a very difficult journey. I believe that the protease inhibitors will be a very good thing for HCV patients in general and particularly for transplant recipients with HCV. I hope to see some real progress in these patients very soon.
The statement by normlife: "don't think that transplant is the answer" is rather harsh and short sighted. Were it not for his transplant HCV probably wouldn't be an issue and that certainly isn't an acceptable answer.
Stay strong and stay positive Elaine.
It is always the case that Hep c will reinfect the newly transplanted liver. The question is how soon and how fast will the infection progress to disease and how fast will that disease progress. This is different for different patients. It can be that the patient will have to be treated within a year from receiving a new liver, or it may be many years before this is necessary. But for the people in this situation, the transplant is the way to go (and the only way) or they would not be on the transplant list. I am treating HCV in my new liver, but without a transplant, I would not be here for this opportunity.
As far as getting on the transplant list, your doctor will refer you to a transplant center when there is no other alternative, or at least when it becomes obvious that that is where you will need to be soon. You should not even be considering this yourself unless you have already been diagnosed with end stage liver disease (Stage 4 cirrhosis). You should not even consider a transplant just because of Hep C. That would be like amputating your finger to get rid of a wart (excuse the comparison).
The beginning of getting on the transplant list is to see a doctor at a transplant center. He can make the evaluation of whether or not this is necessary.
My husband is 50 and has had Stage 4 cirrhosis since 2001. He was treated for Hepatitis C in 2001, and all of his subsequent tests for the viral load have been negative for Hep C since then. His energy never came back after the interferon treatment (PegInt/Ribavarin, 52 weeks), and his gastro enterologist told him that he thinks that the treatment put his liver over the edge. He is being monitored now by liver specialists, but they are reluctant to put him on the transplant list because his MELD score would be "too low" (<6). Is it up to them to decide whether or not he gets put on the list? Since he is currently clear of the Hep C virus, does anyone have information about the virus reactivating with a new liver? We are researching live living related donation since his 28 yr old son is willing to be tested. Would his MELD score need to be as high as it would be for a cadaveric transplant? Also, his twin sister died a year ago in March from liver failure - she was diagnosed with Hepatitis C the May before, but was unable to get treatment.
I appreciate any information anyone can offer and apologize for all of the questions in one post.
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My first thought is that you might have a hard time finding a center that would perform a living donor transplant with a MELD score <6. Generally centers are reluctant to perform a LDLT with a MELD score <10 unless other circumstances are present such as Primary Sclerosing Cholangitis or Primary Biliary Cirrhosis. Living liver donation presents an ethical question for some doctors because there first obligation is "do no harm" and with LDLT the donor is put at risk.
I don't think there's a lot of information about living donors to SVR recipients - SVR [Sustained viral responder or "cured"]. There is some information regarding SVR recipients of cadaver livers and it appears that generally the hepatitis does not recur post transplant. This area is not clear because transplant patients waiting for a liver while they treat may not have been clear of the virus for 6 months when they have the surgery. Some of the literature discusses recipients who were clear at the end of treatment and perhaps they would not have remained clear for the requisite 6 months to be able to characterize them as SVRs. My recollection is that true SVRs remain clear post transplant.
If liver specialists are treating him I would assume that they know what they're doing. It's not just getting listed Anna - it's having a score high enough to get a liver and with a score of < 6 I can't imagine him getting one. I always think that being involved with a transplant center as early as possible is wise in the event that a transplant becomes necessarily so I am not trying to discouraging you in any way.
I don't believe that with a living donor transplant the MELD score needs to be as high as it does with a cadaver donor but you would still have to find a qualified transplant surgeon who would do the surgery and that might not be easy. And then there is the insurance issue and that might be somewhat complicated as well.
I should also mention that transplantation entails its own set of circumstances even without hepatitis c. It is a great thing for those who need it but it is not a panacea. If you read about quality of life post liver transplant you will get an idea of what I am alluding to.
I am just talking off the top of my head Anna so don't rely on anything I said. I'm just a patient and, though I pretend to be a doctor, I'm not really in the medical field at all.
I wish you good luck,
I think it;s important that you frame the issue correctly. To me it's not a matter of, "He needs a liver but they won't give it to him because his peky MELD refuses to budge." Rather, it's more like, "He never really go over treatment, but apparently his liver's pretty healthy because his MELD is remaining good."
I'm in a similar place. Stage 4 and SVR for 3 years now, and never really recovered my strength.But I think my liver is holding it's own. MELD around 6, platelets appear to be gradually rising.
I would question more on the theory of treament doing in the liver. Were that the case, I would expect him to show signs of deteriorating with 10 years. But that's just speculation on my part.
A biposy or fibrscan would be potential options at this point. What are his platelet and WBC counts?
I think you've gotten lots of help with your questions Anna, but I wanted to address one thing you said.
You said my husband never got his energy back.
Lucky for you I was just reading something today that I had known years ago but forgotten...and that is that chemo therapy can often lower testosterone levels signifigantly.
I know after my husbands cancer he was very listless for a year and I kept telling him to go get tested but he wouldn't. He finally did, and it turned out that he had almost zero being made. It's a male menopause, and they hardly ever test for this...they check your CBC, and liver panel, and say, you are fine...but you know when you aren't, or when someone you love isn't.
So I'd encourage you to get him tested and see because like I said the chemo does suppress this important hormone...this is where so much of a man's moxy drive and energy come from....I don't mean all but a lot...and the reason men stay so vital longer than women is because normally they keep making their hormones longer than we do,
Anyway, it's loss can make for extreme shifts in mood and energy just like menopause does in women, and its very treatable if he has this so get it checked. Funny how I was just reading that anew today...almost like "Someone" knew you were coming in here before we did!
I have a family member that is in End Stage Liver Failure and his doctors are saying his liver is decompensated and his MELD score is around 20. He has to be seen every week now to have fluid drained off his abdomen and they are now getting 6 liters of fluid off him instead of 1-2 previously. He can not be put on the transplant list until he has been approved for Medicaid and they are giving him the run around. What do you think his outlook is? Is this something that he can live with for a while?
my father has a liver transplantation 15 years ago and two months ago we discovers with ultrasonic that there is early cirrhotic changes and moderate free ascites and the HCV RNA quantitative is 2.3*10^6 but his liver function is not ba except Albumin became 2.6 and after he took Albumin in the hospital and its level increases again and he took medicine to get rid of the ascites . we don't know what happens and what causes this
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