what now?

[cjoy68]

I have had hep c for 24 years and have been on inerferon for six months 18 years ago (while i was pregnant, and uninformed it had not been tried before)  then ribo and int 8 years ago now after being monitored and headscrewed for the past 3-4 years i have been refused the new treatment as my liver cirrosis is too advanced to cope with it. I basically have been told there is nothing for me but a transplant when that deems nessesary, Im not on a transplant list and have no one to talk to regarding anything to do with my fears plans choices etc... I live in New Zealand, appreciate any advice, discussion, or help that can be offered.
Cheers

[ceanothus]

I'd just like to bring attention back to the first part of Hector's response - do you truly have end stage liver disease? There are also a number of us here who have bad cirrhosis (but compensated) and are still managing to go through the triple tx, with strong hopes that we might still be cured of hcv and avoid the transplant decision. If you aren't sure of your diagnosis, make sure before you give up on treating again.

[nygirl7]

Hang with Hector cjoy he has a lot of valuable information and insight into this subject - and he's a great guy to boot :)

[HectorSF]

Glad to help.

Hector

[cjoy68]

Wow awesome feedback HectorSF. Im in the place in my life that 'would I transplant'? or do I just live my life path and believe that a happy healthy mind makes for similar physical self.
Just neat to know there is others out there that truly understand, family wants to help but fear the truth and then my guilt makes me retreat from them.

hey thanks mate
cjoy68

[HectorSF]

'i have been refused the new treatment as my liver cirrosis is too advanced to cope with it.'
So you have decompensated cirrhosis? Otherwise known as End-Stage Liver Disease (ESLD).
You have or have had at least one of the following complications of cirrhosis.
* Ascites (bloating of the abdomen due to fluid build up)
* Bleeding Varices (you have had veins bust inside you so you vomited blood or defecation large amounts of blood)
* Hepatic Encephalopathy (mental changes, sleep reversal, flapping of hands, stupor or coma)
* Jaundice (persistent or recurring yellowing of your skin and eyes)
Sorry, I am not familiar with the New Zealand health system so I will explain how the US system works as they are probably very similar except for government support of healthcare.
Assuming that you were correctly diagnosed by a hepatologist, if you have End-Stage Liver Disease you are too ill to treat your hepatitis C. So over time your hepatitis C will continue to replicate in your liver and destroy it more and more until either your liver fails or you develop liver cancer.

'Im not on a transplant list and have no one to talk to regarding anything to do with my fears plans choices etc.'

Yes, this can be the biggest decision you ever make in life. It is not easy but it is doable but you need help. No one can do this alone.
Contact your nearest liver transplant center.
Get a current diagnosis of your liver disease.
Based on what they find, they will begin the process of listing your for transplant. This is a process that takes awhile as they have to make sure you are physically and mentally prepared and able to survive a transplant and take care of your donor liver for the rest of your life.

They may have a transplant support group at the transplant center. I have found the meeting invaluable as you will meet other patients like yourself how is waiting for a transplant and you will meet patients that have had transplants 1, 3, 5, 10, 15 and 20 years ago that are living happy and productive lives. No amount of reading about transplants can give you a realistic picture of what will happen like meeting other in the same boat as yourself. As part of the listing process you will talk to a psychiatrist to make sure you will be able to mentally deal with the process. If would also suggest talking to a therapist, priest, voodoo doctor whatever so you can discuss your fears and anxieties openly with someone. Friends and family can provide care-giving support but most people are uncomfortable talking about the terror of death and other taboo subjects.

Yes, preparing for a liver transplant is the most complicated thing many of us have ever done. But just take it one step at a time and you can do it. I have had End-Stage Liver Disease for over two years now and now I have liver cancer also. It is not easy but if their is a will to live somehow we will do our best to find a way. I know it is frightening. Anybody would be afraid of having their abdomen cut open, the liver that they came into this world with removed and replaced by the liver of some poor soul who died but was thoughtful and caring enough to have their death benefit an unknown person. Those donor are hero in my book.

Here is a link to a great manual for transplant patients that explains the whole process (at least here in the US although I imagine it is very similar in New Zealand).
http://optn.transplant.hrsa.gov/ContentDocuments/PartneringWithTransplantTeam_508v.pdf

If you have any question feel free to ask. You can also send me a private message.
Hang in there! Many of us are in a similar situation.
Cheers!
Hector