Greetings from Gainesville, Florida. I wanted to post to let those of you who are familiar with my plight, what has transpired. It has taken me this long to get an appointment with the hepatologist and hematologist.
I came up here from Titusville by myself(mistake), thinking this was going to accomplish a plan to get this tumor out of my kidney. Not the case.
The hepatologist did not have a current hepatic panel bloodwork when he told me this today. My labs were drawn after my appointment. My ct scan from last week showed a trace amount of ascities. My platelets are at 79,000. The nurse practitioner I saw before seeing him today had ordered a fibroscan, endoscopy, and colonoscopy. The doctor told me I did not need a fibroscan or liver biopsy. I was a Child- Pugh class B. He stated that I had maybe 2 to 3 years to live, that I was end stage cirrhosis, with a 50% chance of complications within a year. He based this on the ascities. A trace amount??? He stated that if I had the tumor removed, it would be five years before I could be cleared to be put on the waiting list for a transplant. He said basically that I was darned if I do, and darned if I don't. I asked him which was going to kill me first. He said, "Your liver."
He was abrupt and blew me away. I was not prepared for this news. I was under the impression I was maybe stage 2 cirrhosis. I am sitting here, in shock, thinking, do I need to get a second opinion on this death sentence.
My stomach is not distended at all. I have no confusion. The cat scan said normal size liver that continues to demonstrate minimal lobularity suggesting the possibility of cirrhosis. No discrete hepatic mass is noted, no intrahepatic ductal dialation. In addition, my viral load continues to be undetected after Harvoni treatment.
Sorry, but I am angry. I have yelled from the mountains, being told that I am not to the point of needing a transplant. Now I am being told I am not eligible and my liver is broken because of the ascities. Do you have any input, advice, suggestions that may help. I mean, he left me with no hope. I feel like I don't have enough information. Meanwhile, I see a lot of people with distended stomachs, walking around fine.
Thanks for reading and sorry it has been three months since I posted. David....Ziffle..Mama Lama..the miz...are y'all doing okay? I think about Connie every day. She was a fighter. I'm one, too. Just don't know what to do now.
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher