A few minutes ago I met with the doctor who happens to be the same doctor as the recipient. He looked over my charts and records etc and pretty much asked why I was there. I said I was diagnosed with Hemochromotosis and a fatty liver. He looked at my charts and didn't see where the Hemochromotosis came from so he ordered a confirmation blood test and a DNA test to make sure everything lines up with my "diagnosis".
He was more concerned with my fatty liver. That does need to be taken care of. The fatty liver has a bad long term diagnosis as well. But he was still perplexed that I was told I had Hemochromotosis. In his mind, I do not. He went over the blood test results and showed me my numbers then he told me the "normal" numbers.
Even though he didn't see anything that indicated it, he wants to see what the second set of very specific blood tests will result in.
So that's good news #1.
Good news #2 is that the fatty liver has not been damaging. From what he could see on the tests and the biopsy results, indicate that my fatty liver can be stopped or loosely reversed by diet and excercise. He and the other doctor both mentioned the South Beach Diet. So I guess I know what I will be getting in my stocking for Christmas.....
I have a followup appointment Jan 16th to see how things are going as to go over the results of the tests ordered today.
Good news #3 (for me anyway) is that if my fatty liver is reduced or eliminated, I may still be able to donate my liver to the recipient. (Sorry mom). But it's not 100%. They have been able to do donations from donors with fatty livers to recipients in Japan. The genetic makup of the Japanese versus Caucasians has not been studied so they don't know if us fat Americans can be successful with that type of donation. (The "fat American" quip was mine). The Japanese v American was the Doctors.
Good news #4 The doctor I saw today is willing to correspond with me with any questions I have for the blog. Sort of a pseudo medical consultant. He was really excited to hear I had a blog. I also told him my plan was to get the blog into a book form next year and I was planning a photo project for 2007 to help bring about awareness of organ donation. He was honestly very excited to hear about these things and offered help and information.
I had mentioned a while ago that for this informaiton puzzle I have:
1) Beginning liver donor (that's me)
2) Recent liver donor (that's Becky)
3) Recent liver recipient (that's Joe)
4) Currently waiting for a liver (that's Ed)
5) I WAS missing a doctor or nurse involved with liver transplants.
Now I can fill in #5 with my hepatologist, Dr. Shaw-Stiffle. Yeaaaa
Bad news #1. My doctor (and the recipients) will be leaving Pittsburgh in January for Canada. He is returning home to care for his parents. While I do like him, and it would have been great to have both the recipient and I to have the same doctor, we wish him nothing but wellness and succcess back home.
I have motivation. I have heart. I have a goal.
Right now, I have in my head chapters for the book.
Ch 1, An offer to extend a life (my donation story)
Ch 2 Diagnosis and denial
Lets move on to chapter #3, "A new outlook on the future"
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