Aa
liver transplants
I was diagnosed 8 years ago and I have been all the injections 3 or 4 times. Non responder.My g- dr. told me 18 months ago that I needed to go to a liver transplant hosp. and get on their list or I would be dead in 18 months. it 20 months and I am still kicking. I thisnk he jumped the gun and scared the poop out of me. I have g-paresis and I have had acites and been tapped once before, quite alot of fluid in there I must say. anyway, the pleace I went to is lifelink in tampa florida whic my g-dr. told me to go to. My pcp told me I should go to uf in gainesville because lifelink is in it for only the money. Its a 2 hr drive to gainesville. I don't know if my car will make the drive. Who should I believe. What can I do. I was so sick for so long and now I feel great except for the g-paresis and I can't take regalin, it makes me feel like I am on amphetamines. I am on disability and when the dr. told me I'd be real sick in 18 months I went to voc. rehab and went to school. I figured just incase he was wrong, I'd go to school so I can be productive and feel good about myself. I am projesting liver failure, bloating, jaundice etc in my future and it has made me depressed after 2 years of not being depressed. I know life is a day at a time, but projecting suffering is a bummer. PS i'm still not on the liver transplant list. so I guess thats good?
Thanks, Bob, for putting so much in perspective.
I am in relatively good health with low liver damage, so it's a real riproaring shake-up for me to feel so awful on treatment. It's an eyeopener to me that people endure so much pain and suffering with HCV before or after treatment. Without minimizing my own discomforts, I feel strongly that they are relatively trivial. I am not by nature one to stare at my navel, at least for long, and you have put me back in mental order. Thanks again.
I was feeling a little down from all this kefuffle, not knowing where comments like the ones from Copyman could possibly be passed off in this world as legitimate, informed sound bites. It served an unintended purpose, though, and prompted people like you to emerge from the woodwork to inspire others.
All the very, very, very best.
I am in relatively good health with low liver damage, so it's a real riproaring shake-up for me to feel so awful on treatment. It's an eyeopener to me that people endure so much pain and suffering with HCV before or after treatment. Without minimizing my own discomforts, I feel strongly that they are relatively trivial. I am not by nature one to stare at my navel, at least for long, and you have put me back in mental order. Thanks again.
I was feeling a little down from all this kefuffle, not knowing where comments like the ones from Copyman could possibly be passed off in this world as legitimate, informed sound bites. It served an unintended purpose, though, and prompted people like you to emerge from the woodwork to inspire others.
All the very, very, very best.
I posted on your other thread, and I have had a transplant. My doctor said the same thing to me that yours said 18 months to live without a new liver. I set out to do everything I had to do to get listed. I went to Johns Hopkins even though it was an hour and a half drive from my house but I had heard it was one of the best hospitals in the world and it is IMO.
Please get your gastro Dr. to set up an appointment with you at a transplant center, I do not know what your meld score is or what your fibrosis is or anything else but all of these will dictate how long you might have to wait for a liver. I got very lucky, it took me a little under a year to get listed, my insurance company dragged it's feet, but once listed I have a new liver in about 6 weeks.
My platelets before transplant were to low to allow for treatment but now I have no cirrhosis and am considering when to start treatment post tp for the HepC that always re-infects the new liver.
It sounds to me like you need to get listed and you need to act on this infor soon.
PS - two of the symptoms I had that were real troublesome for me was loss of mental acuity (encephalitis) and being easily agitated. I felt so ill and so out of ease that I had to really strive to not lash out at people. Perhaps the others on the forum who might have been a little upset with your final post might want to realize that end stage liver disease is worse than treatment and a little compassion can go a long way.
Good luck,
Bob
Please get your gastro Dr. to set up an appointment with you at a transplant center, I do not know what your meld score is or what your fibrosis is or anything else but all of these will dictate how long you might have to wait for a liver. I got very lucky, it took me a little under a year to get listed, my insurance company dragged it's feet, but once listed I have a new liver in about 6 weeks.
My platelets before transplant were to low to allow for treatment but now I have no cirrhosis and am considering when to start treatment post tp for the HepC that always re-infects the new liver.
It sounds to me like you need to get listed and you need to act on this infor soon.
PS - two of the symptoms I had that were real troublesome for me was loss of mental acuity (encephalitis) and being easily agitated. I felt so ill and so out of ease that I had to really strive to not lash out at people. Perhaps the others on the forum who might have been a little upset with your final post might want to realize that end stage liver disease is worse than treatment and a little compassion can go a long way.
Good luck,
Bob
we also have a transplant forum for people who might be candidates for transplant....maybe someone there would be more equipped to answer your questions.
Bug
Bug
we also have a transplant forum for people who might be candidates for transplant....maybe someone there would be more equipped to answer your questions.
Bug
Bug
Cammie,
I am sorry that you feel unheard/unresponded to in a timely fashion. I am new to this forum and have found that people usually respond to questions when they have good information. If I have no knowledge to offer, I can only offer support.
I am sorry that you feel unheard/unresponded to in a timely fashion. I am new to this forum and have found that people usually respond to questions when they have good information. If I have no knowledge to offer, I can only offer support.
Sorry, I was at work. In answer to your question, yes it's good not to be on the list yet.
The reason no one has answered you is that there are just a very few people on this forum who have any experience with transplants. I think there are just three members and they are not online every day.
You would not want someone like me to advise you on transplant matters, as I know nothing about the subject... and most of us don't. You could also try the transplant forum.
Marcia
You would not want someone like me to advise you on transplant matters, as I know nothing about the subject... and most of us don't. You could also try the transplant forum.
Marcia
You are all supposed to be so informed thru our own experience and I post something and not a single soul even tried to communicate with me . What the heck gives. I don't need any answers from any of you people. I.m outta here and you people are too clicky for me.
cammie
You all make me sick to my stomache!!!!!
cammie
You all make me sick to my stomache!!!!!
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