tp list

[susy50]

Also so everyone knows and maybe i can get a bit of info about transplants after failing the pegasus treatment friday my doctoe has finally put me on the transplant list .please i need all the info i can get.

[HectorSF]

All good advice OH!

Diet is very important. As our diseased livers can't manage "regular" food like it once could.

I do yoga, light weights and breathing exercises. Really good for calming the mind especially before some of the nasty procedures we must go through.

I do all that you mention myself and it really helps a lot.
Unfortunately I have 6 drugs I must take every day to keep my complications over control. Complications such as ascites, hepatic encephalopathy, portal hypertension, but it is well worth it once I got the dosages dialed in.

Cheers!

hector

[orphanedhawk]

The first time I did tx I also had ESLD and tx didn't work for me but I didn't land up in the hospital either.

Besides Hector's excellent advice, I'd suggest cutting all salt out of your diet. I kept my ascites at bay for 3 years by doing that and only occasionally using diuretics. Read labels, avoid salt, sodium ( the same thing) and iron.
Don't eat red meat, but do eat protein, beans, chicken, fish, tofu and eggs, especially the whites are good.

My own personal advice is do something relaxing for your self, meditation, yoga, things that help you learn to control your breath, slow down, clear your mind. These things have helped me immensely through this process.

Best of luck~
OH

[HectorSF]

Liver transplant info for patients:


Very complete Northwestern - A patient's Handbook

http://www.nmh.org/ccurl/1019/54/Pre-Liver%20Website.pdf


Pre Liver Transplant patient information booklet.

http://www.royalfree.nhs.uk/pip_admin/docs/liver_trans_1218.pdf


CPMC here is San Francisco has great info for patients.

http://www.cpmc.org/advanced/liver/patients/default.html


Ohio State -Liver Transplant Handbook

https://patienteducation.osumc.edu/Documents/pre-liver-handbook.pdf


Good reference

https://patienteducation.osumc.edu/Pages/search.aspx?k=liver+transplant


Hector

[HectorSF]

Your transplant center is your number one resource for all things about transplant. They have lots of info about transplants once you get listed.

By the way... I am confused as to why your doctor would treat  your hep C if "my liver just aint working at all". Treating someone with hepatitis C therapy is experimental for persons with End-Stage Liver Disease. Maybe they were being cutting edge?
As I am sure they told you before starting treatment... there is always the chance that hep C treatment can cause liver failure in anyone with extensive liver damage already. That is a risk all cirrhotics take.

What is your MELD score if you don't mind me asking?

Here is some potentially good news for you.
Since you were able to achieve an undetectable viral load if the center doesn't have too high of MELD score to get a transplant at you may be about to treat for weeks if a month or two BEFORE transplant so your donor liver will not be infected by hepatitis C. That will improve your chances greatly of a long life after transparent.
Once of "advantages" of having liver cancer is we already know when I will be illegible to receive my transplant as our MELD points accumulate with time only not illness. At our center I have to have a MELD of 34. I plan on doing hepatitis C treatment with triple therapy a month or two before my transplant. Since I was a non-responder to interferon and ribavirin I have about a 30% of reducing my viral load to zero. But If I can do that, then they will transplant me ASAP. Otherwise I will have to treat after I recover from transplant like OH. I would ask your hepatologist if this might be an option for you.

Hang in there.

Hector

[susy50]

thank you ya i read some of your posts and realizes you have had a transplnt and its been great for you ,i dont have liver cancer but im end stage liver disease very advanced .my liver just aint working at all at this point the pegagsus treatment was just worse for me .I will keep you posted thanks i will ask you more questions when i begin to learn a bit more .need to wrap my head around this first

[orphanedhawk]

I'd be glad to answer more specific questions as I've had a transplant.
Feel free to pm me.

Since another member has recently been put in the same situation ( he also has liver cancer) I'm posting a couple of links to his recent posts.
Answers in there will help you too.

http://www.medhelp.org/posts/Hepatitis-C/what-do-I-ask-the-surgical-team/show/1690615#post_7725409

http://www.medhelp.org/posts/Hepatitis-C/liver-cancer-transplant-survivor-encouragement/show/1697592#post_7761768