Hello Everyone.
It's been a very long time since I've touched base with you. For that I am Sorry.
For those of you who have joined in the past year, my husband, Harvey, was diagnosed with PSC (Primary Sclerosing Cholangitis) in 1994 and finally received a liver transplant in January of 2009. I joined this site in December of 2008 seeking support as a caregiver (topic pages 75+). If you learn nothing else in your search for answers, understand that regardless of the diagnosis (PSC, NASH, Hepatitis, Alcoholic Cirrhosis, etc) the symptoms and the outcome of ESLD (End Stage Liver Disease) are virtually the same. This is one of the few places on the Internet I found where everyone was speaking my NEW language (acites, itching, encephalopathy, varices, etc). I instantly realized that I was not alone . . . and it was a blessing to me.
I can’t imagine a topic we didn’t discuss regarding ESLD. So if you are looking for info, use your search button on the topics page and I’m sure you will be enlightened. Otherwise, simply ask. This is a very caring and generous group who can appreciate what you are going through.
Special thanks to my old friends Diane, Connie, Shelly, JoAnn, Mer, Joan, Sue, ButterflyThree, and Rick. I love you guys and was blessed to have found you. Thank you for all of your support throughout my ordeal.
Harvey is now returning to the Transplant Clinic on a 6 month rotation. In late September, they reviewed his blood work and remarked, "Anyone looking at these blood tests would have no clue that Harvey had a liver transplant. His new liver is functioning flawlessly." That's the good news. The bad news is that the side effects from the medications leave him nervous, fatigued and he is having trouble sleeping. He must drink a lot of water to avoid kidney damage from the meds. Given that he would have been dead without the transplant, we shouldn't complain except that the disease robbed him of so much time already. It's the "bitter with the sweet". We make the most of each day and understand that each day is a gift from God.
I think of you often and continue to pray for you. I'll try to check in more often.
Love,
Penny