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How long can you live with cirrhosis due to hep.C? No doctor tells me. I'm on a waiting list for trasplant but I hate the idea of doing it. I know my life will be full of pills, and that , due to my hep C ,relaps is quite sure. i can't make a choice, Is there anyone who can help me
salome,
I know how scary liver disease is . and I understand the feeling of not really wanting the transplant in some ways.
Although no Dr. can really tell you how long you will live if you are listed for transplant you are given a MELD score. This score reflects the risk of dying in 3 months. It doesn't take into account the symptoms just lab work. Even with this there are people that stay on the list for years. You can have a high score and receive treatment and your score go down.In reverse you can have something happen like bile blockage that increases your Bilirubin and your score goes up,the blockage resolves , your Bilirubin comes down and your score goes down.SO your MELD score changes ( in both ways ) as your health does.
You can figure your MELD score your self if you know
Your Bilirubin,INR and Creatinine .
It is very common for Drs. to wait until after transplant to treat HEP C. the liver is healthier and more able to clear the infection, Which most people do. Even with Hep. you can live a long time with treatment and a new liver and Hep doesn't always cause Cirrhosis.
my Cirrhosis was not caused by Hep and transplant is a personal choice. I have Diabetes so I have to take pills and insulin several times a day. I think it's no different than treating any chronic disease. No I don't like It but Living is important also. For me I say, Go for it!
Gail
thank you for your answer. Your attitude is very calm, and maybe this calm is what people on a waiting list need most, being always depending on a phonecall at night,or having to remain in a close area from the hospital who's going to do the trasplant. I'm on the list since two and a half years now and still feeling well, but some episodes of bleeding. I'm living in the hope I will heal alone and not need a transplant, maybe I will do it only feeling really sick.
thank you for your answer. Your attitude is very calm, and maybe this calm is what people on a waiting list need most, being always depending on a phonecall at night,or having to remain in a close area from the hospital who's going to do the trasplant. I'm on the list since two and a half years now and still feeling well, but some episodes of bleeding. I'm living in the hope I will heal alone and not need a transplant, maybe I will do it only feeling really sick.
Reply
Stay positive, stay focused, I know the anxiety that your are feeling. My husband was waiting for a liver and his bloods were doing great, then all of a sudden he spiraled. He was diabetic as well. On the 1st of June he had his transplant. He looks and feels fantastic. Yes there are lots of pills, He now has a 2nd chance, plus diabetes has gone. Its a miracle. You will survive and you will have a better quality of life. just take care of yourself while waiting. Good Luck
thank you for your reply. Yes indeed ,this is what doctors are saying, you can feel very well for a time and all of a sudden you collapse. You gave me courage to go on!
Hi again.
Glad to hear that I have given you some courage, that's great.
Anxiety is just horrible. But in the meantime set yourself some goals. I know it will be a challenge as fatigue is a major factor that you would be feeling the most. But leading up to a transplant and post transplant one of the biggest things that is affected is your muscles. So if you can exercise by gentle walks, keep your muscle tone up, keep yourself as fit as you can. Also eat plenty of protein and calcium One of our friends just had a transplant 2 weeks ago, with cirrhosis and hep C, he is doing great as well. Dont worry about the pills, its pretty easy going. Life will be so Good for you.You will not know yourself, Trust me!!
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