I cant get TX only option is to see if can have a transplant?

[Alive33]

has anyone been here before, i am sure theres plenty of tests some regular, idk what they are Im 33 i was told i cant have treatment for Hepatitis C, I can have a transplant or die

I dont drink or smoke i do all the good stuff like for 2 yrs im not yellow. will i go yellow? idk anyway they said you have about 5 years if you dont have the operation. So now im seeing people about an operation I know about only from reading. I just wanted to hear of a personal experience if you know someone who's been there done that what it was all like are they still good cause after I have it I will have to have treatment if I am able to have the transplant or if I survive the Transplant.

So in all I just would like to know a timeline for how this might go down if you can help. anything else you wanna add feel free...

ta.
A33

[Alive33]

I had some imaging so far, like this has been 2 years, they waited for my platelets to increase to go on treatment, however they dont. they get eaten by my spleen, Im no MD but thats as I understand it.

So with the clotting, because my platelets are so low they have given me transfusion before. See IDK until I got real sick from something else how sick I was. So i had transfusions and the platelets went up but they didnt stay up. I get some hardcore bruising, like I got punched in the leg. but it goes away. I bleed a bit but i dont bleed out unless i have serious accident, so I dont play contact sports. My spleen is enlarged. IDK what it all means I just assume its not good, but Im not depressed and if it is a no go I am not really sure what to do then that would be the hardest decision to make.

I encourage my family to read this as i have repeatly tried to explain this to them they do not or will not accept and understand. They think it will get better, unfortunately that is impossible. if their was a magic elixer or tab sure. reality is it will get alot worse before it gets any better. I would encourage people to talk about it with someone they know it would make it easier i know how hard it is i find it alienates my social life and leaves me pretty alone at times. again im not sad IJS I can handle that some people probably cant and if I did have people I knew i could trust to talk to about it who understood it would make things much easier and less frustrating to explain.

thanks

also i live in Australia not America or Europe.

[mikesimon]

Basically transplantation is intended to extend life so any factors that compromise the likelihood of that result exclude a patient from receiving a liver.
Exclusionary factors include infections, extra-hepatic malignancy (cancer outside the liver), ongoing alcohol or drug abuse, cardiac disease, advanced liver cancer (they'll transplant a patient with up to 3 lesions equal or smaller than 3 cm and 1 lesion < 5 cm). This criteria for liver cancer is called the Milan Criteria and some centers have expanded that criteria slightly in certain cases but generally the policy is as I described.

Once you're listed you'll be followed by the transplant physicians. You'll undergo imaging studies and blood tests and your MELD score will be determined. The higher your score the more likely you are to receive a liver. The MELD score is based on 3 factors - bilirubin, creatinine and INR (international ratio or essentially clotting time). You will be monitored by the transplant center and periodically your MELD score will be re-evaluated.

Look at this link. I think it will be very helpful.

http://www.aasld.org/practiceguidelines/documents/bookmarked%20practice%20guidelines/liver%20transplant.pdf

Good luck,
Mike

[Alive33]

This is from a heptology clinic as in a hospital, I have had hep c since I was 15 maybe or transfusion idk but I drank a lot of alcoholic beverages which is why I have a problem. If I drink now the heptologist told me I die, I never had biopsy. I got told my platlets are always 30 -40 low enough to cause bleeding and bruising.

Can you tell me what its like on the wait list or if you make it what qualities they look for in transplanting?

[orphanedhawk]

I never had a biopsy until after my transplant.
And treatment isn't always a good idea if the liver is already very damaged.

[FlGuy]

Even if you have a transplant you will still have HCV.  Studies have shown that HCV can damaged the transplanted livewr at a faster rate.  Then, you are in a similar boat.  Best approach is to deal with the underlying condition before it gets that far.  Why can't you do TX?  

[mikesimon]

"A liver biopsy shows the exact condition of your liver and you should never, ever go through a transplant without a biopsy...."

I had a transplant without a biopsy. Many transplant recipients do get transplanted without undergoing biopsies because the doctors often don't need a biopsy to know that a transplant is necessary. It can also be quite dangerous to biopsy patients with decompensated cirrhosis.

I don't have any idea what the situation is with Alive but I wanted to clarify transplant procedures and practices.

Mike