New Member

I just found this forum last week and have been reading the posts.

I was diagnosed with Giant Cell Hepatitis in 1990 and have been on prednisone ever since.  In 2008, I was diagnosed with heptatic encephalothopy and referred to the transplant center. Since then, my meld scores have ranged between 14 and 18, so I am deemed too healthy for a transplant.  They are watching a lesion on my liver and an enlarged abdominal lymph node.  I have been disabled since March 2008 due to extreme fatigue and encephalothopy.  In September, I qualify for medicare due to the disability.  I am only 48.

Most of the transplant forums I have found are more geared to post transplant members than those waiting. 

I am looking forward to sharing my experience of living with with liver disease with all of you. 

Hi, Suzie!  I also wanted to welcome you to the forum.  I had never heard of that type of hepatitis, either, but learned a bit in a Google search.  As PG said, all liver diseases have certain things in common, so you should feel right at home here.  It's a very supportive group.

Hugs,

Connie

Hi, SD! How have you been doing? You no longer drink, do you? It's the worst possible thing you can do to your liver. I've forgotten....do they have you on prednisone, too?

Hugs,
Connie

SD, how has your lab work been lately?

Hugs,
Connie

Glad you're not taking Prednisone! It's a scary drug altogether, but does have some benefits in certain cases. When I mentioned lab work, I meant your liver enzymes, etc.

Hugs,
Connie

You said in another post that you weighed 76? Was that correct? Also, do you have ascites? If so, the fluid could be pressing on your lungs and causing problems with breathing. It's a positive thing that your liver and kidney function are good, though.

Hugs,
Connie

Yes 76 lbs. I'm up to 82 this month. Finding clothes is impossible. I'm 5'4 and small build but still look like a skeleton. Thankfully my grandkids aren't afraid of me. I had botox to fill in my checks since i'll never be able to do it on my own.

plz stop smoking... My partner who died April 22nd... got pneumonia from smoking.. which contributed to his dying earlier... and also... high blood pressure pills caused his blood pressure to crash.. be careful.. you have a very delicate body... tiny woman..

SD, I am so glad to see you are able to gain some weight! On the smoking thing, talk to your doctor about Chantix or something to help you. My husband took it (along with an antidepressant) and it really helped him kick that habit 3 years ago! He had to quit before they would place him in transplant list. So there was his incentive.

I believe Connie was talking about the Vertox. It's not approved by the FDA yet, but it is a drug that is combined with interfuron/ribovarin for treatment of HepC.

Connie, if I am wrong on this, please feel free to correct me!

SD, I hope you continue to improve on your appetite and gain some more weight!

SD, I used Nicorette patches to get off cigs. I was a 2-pack a day smoker for 40 yrs. If I can quit, you can, too. Of course, I was in a body cast initially, which helped. But I didn't go back on the cigs when I was out of it and home. It's been 7 1/2 yrs. now.

Vertex is the pharmaceutical company (one of two I know of) that has a new treatment in trials. It combines Ribavirin, Interferon, and Telaprevir (for the Vertex combo...other company uses something similar.) The success rate is much higher, especially for genotype 1a and 1b. It also is for 24 wks., not 48. It should be available by next year.

Hugs,
Connie

cookies taste better. If a Double Stuff Oreo(s) doesn't wean you off coffin nails, nothing will.

gotta love ur humor david.... and cookies and ice cream??? yes!!