live life, pass it on

I have read several stories here and come up with the same conclusion. We battle to live, we battle with every thing we have. Why not. I am 46 year old as of writing this story. Was diagnosed with Primary Sclerosing Cholangitis at the age of 27. One year after my fist daughter was born. Had my fist surgery, bile duct reconstruction, a few months after my second daughter was born. Life returned to normal. Started to run as a way to stay in shape. This lead to many running races from 5km to the full marathon. Then to triathalons. Loved it, made me forget for the most part that I was a person with a long term illness. As with all good things though it did end. I had a second surgery, bile duct reconstruction, in 2007. Figured that I would be good to get back to racing. Wanted to do Ironman distance triathalon. Ya that was not going to happen. This time I went thru a bout of sepsis. That almost got me. Had to have a tube put in that goes thru the chest wall in to the liver and thru the bile duct to help keep the duct from closing up due to the scaring. This tube was getting changed every 8 week. My blood work get done enough that they know me by sight at the lab. Training dropped down to just about nothing. In 2011 every thing went real bad. I turned yellow for the third or forth time. Blood levels went super high. Went to see my specialist and was walked over to the Solid organ transplant clinic. With in two week I was activated with a meld score of 23. I had lost several pound and was looking at the end or transplant. I was put on antirejection meds to help control the second desease I now have Autoimmune hepatitis. Meds help and with in 9 months I went back to work. Meld score was 6. I do not train any more. I do work but have no energy to train. Thanks to my two daughters I volunteer my time to get people to sign up to be organ donors. Have met life long friends that have gone thru transplant for other organs. Listen to their stories an know that it will work out in the end. This is a long term engagement with a mistress that has educated me and my family. I am still on the wait list, in active. Things go up and down but I am still working and doing thing. I know there are so many others that suffer so more than me. I am lucky, and thank full for what I have.
Tony, Kamloops B.C