Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Many of you know I've been waiting for a second liver transplant for some months now. The Primary Sclerosing Cholangitis (PSC) that destroyed my original liver has come back in the transplanted liver I received in 1998 thanks to my generosity of my donor and her family. Despite having 19+ years with this wonderful liver, PSC has been active again since 2002. And much more active in the past 3 or 4 years.
For more information on PSC, see http://pscpartners.org/
I've been assessed for a potential living donor for my second transplant at the Toronto General Hospital (TGH). This would be a first in Canada and perhaps North America. (Living donors have only been used for first liver transplants.) The reason for this decision is that PSC is "hurt" by the MELD (Mayo End Stage Liver Disease) scoring system used to assess people with liver disease as to when they should or could be transplanted. In my case I am unlikely to get to the top of the list for a deceased donor liver before I am too sick to survive the surgery.
A few months ago I asked friends and family to consider donating part of their liver to me. The liver is a wonderful organ for this purpose in that they can remove part of the donor's liver, and both it and the part remaining in the donor will grow back to full size in 6-8 weeks.
I've been impressed by the number of people who have emailed or messaged me or told me directly that they would be interested in being tested for potential donation. For the first part of the assessment, the two main issues are blood type and body size. In my case you need to have O type blood and be about my size. The blood type match is to help prevent rejection. The body size issue is because we'd both have to live with a smaller than ideal liver until it grows back to full size. And not surprisingly, you have to be healthy. And less than 60 years of age.
For more information on being a living donor, see http://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/The_Multi_Organ_Transplant_Program_Living_Donor_Liver_Transplant_Program.pdf#search=Living%20liver%20donor%20program
While TGH will not tell me the details of who has been tested, I have heard directly from a couple of my potential donors. My first one was ruled out, but another is going for testing soon.
At this time my main symptoms are itchiness and profound fatigue. I've lost a lot of muscle mass and weight. I've had a number of endoscopies to band varices (enlarged veins) in my esophagus to prevent me from bleeding to death. My BP is low. I have a few other minor issues. I'm still trying to enjoy each day. But there are few things I can do as exercise is not considered a good idea. And you know how much I like to be physically active.
Caroline and I decided to set up this site to keep everyone informed on a more regular basis. So please come back and visit regularly. You can still email me, message me on Messenger, and text me. But this page will allow us to tell more people what we're up to in an easier way. Thanks for reading my story.