I traveled to Detroit Tuesday to see the hepatologist & transplant surgeon. There really wasn't any new news. I am in stage IV (worst stage) liver disease and in level A in regard to transplant (lowest level; it goes from A-C). This means a transplant is not imminently needed. I also learned that I will not continue to worsen (in terms of how I feel) at the pace I have over the past 5 years. That was probably the best news to report. The worst news was that I will never feel well again. She predicted a 10-year lifespan if I have a transplant. Without transplant it's probably more like 5 years. There are no new medications for me and none on the immediate horizon due to my having genotype 3a. All of my current symptoms are commensurate with the level of my disease, although there are 3 symptoms that could be from something else and she feels it's best not to assume everything is related to Hep C. So, in January I will have to go into the hospital for three tests to rule out something else that might cause these symptoms to manifest. She really didn't offer me much hope.
My family is ecstatic to learn I might live 10 more years! I have to admit that I would love to see my children marry (at least a couple) and possibly meet a grandchild or two, but I am not as overjoyed as they are because I know what my daily life is like. My quality of life is quite poor; if I were to rank it on the 0-10 scale (0 = no quality, 10= I feel perfect every day) I would give it a 4-5. That's not an easy future to face, and I alone have to face it. My wonderful spouse tries as hard as he can and my kids do too, but they don't have the illness I feel every minute I am awake.
There was another thing in this consultation that really bothered me. I am not sure I can convey it in a manner you would understand. Normally, when you see your doctor, s/he pushes down on your liver area - right below the right ribcage - and asks you to take a deep breath.
when the lungs inflate, they push the liver down so it can be palpated by the doctor or nurse. In a healthy person, very little is felt by the doctor as the liver is squishy and smooth. When I took my deep breath, I could feel my liver hit her fingers - HARD - like a cha-chunk, hitting a brick wall. She let up a bit and I could feel my liver slide under her hand. It was hard as a rock. It didn't hurt, but to say it was a very unpleasant sensation would be an understatement. It's kinda haunting and feels like my body is betraying me.
Oh well. It's almost Christmas and all of our kids will be home tomorrow for 4 days. They are all staying here and I've been working on several things to make their visit fun. I will do my best to suck up my illness and keep a good fake "full of cheer" going. I know it's okay to be myself, but ultimately I want my kids to remember me favorably and feel like I tried my best. Happy Holidays to all!
