I had a operation when I was 2 im 33 Im not unhealthy Im slowly deteriorating. So I went to see a transplant team ive been there had bunch of tests my meld score is right on the border of considered for transplant. but they say cause I had a transposition of the heart, things are a bit back to front. Im not a med expert youd have to google the procedure
So they think they may have to put a pacemaker in as a possibility the anethesist suggests it may be needed, I had a pacemaker before, it was removed I had it for 4 years it got infected and taken out when I found out i had HCV sooo anyway I am bout to have some more tests at the cardiac clinic I have not been accepted for transplant candidate.
I wondered if anyone knows someone who may have had a congenital heart condition and then had a liver transplant it might be a bit much asking if they had HCV to but this is how it is for me, a trifecta. They were unable to see the portal hypertension because of this condition its just words to me not much makes sense besides life and death.
If they cant do this because it may kill me than their suggestion is stay where you are monitor your condition and when it gets bad go to hospital forever or until worse. If they can do this than I think it may be a best seller for someone or at least a medical recognition. because they didnt know anyone that had it done before.
so if you know or can tell me someone who made it through this or vice versa as long as its not to hard for you please help me ease my mind with some knowledge. thankyou A33
First let’s think about your cirrhosis and hepatitis C.
You say that your MELD score is border line for transplant. In the US that is 15. If that is true and you otherwise healthy enough… have you thought about or tried the new triple therapy hepatitis C treatment with an antiviral? In you situation it could stop or at least slow down the progression of your liver damage. It seems worth a try even for 4 or 12 weeks to see if you respond. Have you discussed this option with the transplant center? I would think it worth a try under the circumstances.
Your question if really impossible to answer because the cardio issue(s) you have are very rare and your situation is unique. As far as meeting others who have had successful liver transplants who have had cardio issues...I would say I have meet maybe 100-125 pre and post liver transplant patients at our liver transplant support meetings over the years. I have heard from patients and family members about a few people that had cardio issues such as high blood pressure, previous heart attacks but never your situation. So I am afraid I am not of too much help.
As you know, a liver transplant can have a large affect on any cardio issues. That is one of the reason liver transplant patients are required to have a full cardio workup before being listed for transplant and before being transplanted. Obviously any cardio issues presents an additional risks to the surgery. Only a transplant center can weigh the risk vs. benefit in your very unique situation.
My suggestion would be to talk to the transplant center when they are done evaluating you. No matter what the outcome. Talk to the surgeon so that you can understand your condition in layman terms. That way at less you will know the risk vs. benefit of a liver transplant.
If you were in the US I would say to go to one of the top 5 transplant centers and see if they can help you if the center you are going too won’t list you. I am not sure how the system in Australia works. Here different center have different criteria for listing. So while one center may turn you down another may accept you.
Good luck with your cardio tests and getting listed!
i had asked them about clinical trials and they said being young I would like to put you on them but if we put you on the treatment you will get very sick and likley your liver would not take it and you would die.
In australia the major cities have the transplant team. I just keep going back for more tests they had hinted that end March they would go to the board and put my case forward but as they cant be sure I survive it, instead I will have more tests. I should know within 3 to six months, then I guess I can discuss what other treatment options they have, but from what they said and other cases I assume they dont think the risk is worth it.
So they are saying that your liver is so damaged you can't do any hepatitis C treatment. Is your cirrhosis still compensatedt? No ascites, bleeding varices, hepatic encephalopathy correct?
I don't really know the true impact your cardio issues you have and maybe that is the biggest risk factor. I wish I could be more helpful but cardio and your particular issues is not something I have any experience with. Here is the US some transplant center will try hepatitis C treatment up to about a MELD of 20. Of course this is with constant monitoring and transplant as a backup incase the treatment causes the liver to fail.
Well at least they are doing their due diligence by assessing as much as possible your current health status.
Remember you could stay compensated for many years before you decompensate and have to deal with the complications of End-Stage Liver Disease. I am so sorry you are in such a difficult situation. I really hope they find a way to list you.
"Hepatology. 2012 Mar 2. doi: 10.1002/hep.25692. [Epub ahead of print]
Congenital heart disease and the liver.
Asrani SK, Asrani NS, Freese DK, Phillips SD, Warnes CA, Heimbach J, Kamath PS.
Division of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, Rochester, Minnesota.
they said my MELD score is on the borderline towards needing a transplant. but they say my liver is still sick, dont have any cancerous issues, or bleeding. I go and see them agin in a fortnight before that I will have more cardio tests I had some last time but this is a cardiac hospital i will have some more there than go back to the liver transplant team after the tests. Its still all just tests at the moment
This is an old thread. Most people may not see or read your question. You will get more responses if you start a new thread and post your question. I would suggest going to one or both of the following two forums and posting your question. When you get to the forum, go to the top of the page and click on the orange rectangle, "Post a Question." Put in a subject title, something like, "liver transplant." Then ask your question and post it.
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