Adventurous Reading: The Story of a Woman and Her Liver

     You have probably never gotten a message like this. This is for you, my personal reader. Hang in there for some adventurous reading.

     I am on the Liver Transplant List at the University of Colorado Hospital (UCH). I’ve had a liver disease for 7 years now. And now I’m pretty sick from it. But not sick enough, by the numbers on 3 blood tests, to be anywhere near the top of list. Very low, in fact. UCH has one of the longest liver transplant lists in the US – 500 people. And they only did 82 transplants in 2012. 

     I was diagnosed with Primary Sclerosing Cholangitis (PSC), an autoimmune disorder of the bile ducts. It is not caused by alcoholism. You might have heard of it – it’s the disease that took the life of football player Walter Payton a few years ago. But you may also have heard of Chris Klug, Olympic snowboarder, who had the same disease and became the first medalist competing and winning after an organ transplant. People do survive this stuff and I plan to be one of them!

Happy Days in Buenos Aires!

    If you want more of an explanation of PSC, I can give it to you or you can Google it.

    I am now searching for someone who would be willing to take this very big step: to offer to be a potential live donor for me. It’s "potential" because there's a rigorous evaluation of your health and even your mental state (am I forcing you? etc. etc.) to check for a match. The process begins with your phone call to the Transplant Coordinator at UCH. She interviews you and you ask questions, as many as you want. From there, blood tests are ordered and if those come out well, there is a trip to Denver for surgical and psych evaluation.  

    My insurance pays for everything for both of us – testing, surgery, hospitalization. I would pay for your airfares and reimburse you and your caregiver for a large portion of the 2-3 week stay in Denver post-surgery. The docs have to check you out frequently during that time to make sure you’re doing okay. I can’t reimburse you for all your costs – like possible lost pay or childcare costs. But there is an organization that provides financial help to donors, if you qualify. How cool is that?

    If at any point in the process towards surgery you decide you don't want to have the surgery – even at the point of being wheeled to the operating room – you just say "I've changed my mind" – and that's the end of it. You get your clothes back and head for home. This is how I'd want it if I were you, and this is how I want it for you.  

    Here are some basic compatibilities to know before you grab a phone and tell me YES! –

•      O type blood (+ or -)

•      Ages 18-45 preferred, accepting up to age 55

•     Small body size - my doctor calls me "petite" and I need a smallish liver to share (man or woman), though it's possible they may just take a smaller portion of your liver

•     General good health, no smoking or excessive drinking, no previous abdominal surgery

•     Ability to spend up to 3 or 4 months in recovery. (You’d be able to go back to work after about a month, though!)

      Recovery includes 5 to 7 days at the hospital and a couple of weeks in Denver and followed by the doctors at UCH. Then probably 3 plus/minus months to allow your liver to regenerate. Yes! Your liver grows back, and the portion you’ve given to me grows out to full size. That’s why LDLT works.

    What I'm really asking you for is a second chance at life with my health back. I have friends who have been transplanted and they are thrilled with their lives and ever-so-grateful for the research that brought them new life, and filled with undying gratitude to the people who donated their organs, either after death or as a live donor. 

    I have watched Youtube videos of live donors and they describe a very easy process, quick recovery, and luck...plus a deep sense of fulfillment from helping out someone in need. Here’s one that’s kind of nice –

https://www.youtube.com/watch?v=OuPENdv4xC8

    Remember, you're a "potential" live donor until the hospital's team of professionals decides it is or is not a match. And you, of course, have freedom of choice to change your mind all along the way.  

    Thank you for reading this. You may write in the Comments section if you have more questions and I will get right back to you.   

My best wishes and armloads of gratitude to you,  

Dana

P.S. If you can’t do this or don’t want to do it, will you pretty please forward this on to friends of yours who may be interested? Just send them this link – http://danabeesvoice.blogspot.com/2013_02_01_archive.html.