Sunday, September 5, 2010

Three Years After My Liver Transplant, Where Can I Find Information?

Jaundice. Rejection episode. Oy!

Here's the diagnosis:
Liver with mixed portal and lobular inflammation, bile duct damage, parenchymal collapse, endotheliitis, steatosis, cholestasis
I won't bother to add the detailed "Comment" because it will only further confuse us all. A few days ago I received a copy of the pathology report on the liver biopsy I had last Monday. I'm no doctor, but usually I can find definitions for the terms I don't know and then cobble together some glimmer of understanding. We'll know more when I have bloodwork done Tuesday.

I continue to have trouble finding information about transplant-related illness and complications that crop up more than a year or so after liver transplantation. Statistics about one-, three- and five-year survival rates are readily available, but not much else. I'm determined to continue to search and share. Please leave a comment if you have experiences or knowledge to lend to the rest of us.

Photo by John De Boer


Anonymous said...

You hang in there. I know things seem bad right now, but hang on to hope. My experience with liver disease is that my husband had a transplant just over 2 years ago due to cryptogenic cirrhosis. He had a rejection episode about 5-months post transplant, but got over that ok. Then about 18 months post-transplant he was diagnosed with cancer. He has been undergoing treatments for 5 1/2 months now and should finish those up in another month or two. So I can identify with the fears of test results and fears of what the future holds. But we remain strong in our faith and just hold tighter to God's hand. I will keep you in my prayers...

Linda, Wichita, KS

Anonymous said...

Hi Jay, I have only just discovered your blog today whilst looking for inspiration due to having in the past few months been told that I may be experiencing an episode of rejection but now that it is more likely to be recurrence of my original condition (PSC, for which I was transplanted over 14 years ago). How fascinating to follow your frank and, to be honest,upbeat view on what is basically one rollercoaster ride of emotions which I really do relate to (been there felt that often comes to mind). Please do post an update on your progress over the past few weeks and keep up that unique positivity.

Nige, Isle of Man, British Isles

Anonymous said...

i'm approaching 11 years post liver transplant. i am 44 and had Hep B and cirrosis. i never imagined such an illness as i had always been healthy. my kidneys suffer today due to the effects of Prograf but we have stabilized them and i feel terrific. i am probably the healthiest i've been in my adult life. excercising is very important to maintaining strength, if you don't, please start. it makes a huge difference in how you feel... i didn't discover how much better i would feel til i hit the gym and now i feel like i'm in my 20's. i have been so blessed. in 2001, i was told i wouldn't live another day and today it shocks anyone, even doctors, when i tell them my health history.