My wife and I have just started our family and bought our first house. A new chapter began in our life, and I signed up for life insurance.
That was 15 years ago. I've always been pretty healthy and I thought it was a routine thing. I was denied and I assumed they made a mistake. The insurer's letter states something like: "We started some tests and you did not qualify for life insurance. You should contact your doctor." I was like, "Oh, yes, well!"
But I did. I went through a series of tests, and the doctors told me that my liver enzymes were excluded (high) for someone of my age. In the end I was diagnosed with rare liver disease called primary sclerotic cholangitis (PSC) that slowly accumulates the size of the bile ducts and reduces normal liver function. My doctors told me that I possibly would need liver transplantation – probably some time in my mid-forty – but by then I just need to enjoy life.
That advice was good for me. I'm a pretty positive person and I decided to live as normal as I could until the time came.
Just before Christmas – now I am 44 – I went to one of my regular examinations. My tests are always abnormal, but this time they have changed dramatically, and up. I needed transplantation of the liver. I knew the news would come one day, but that was still a shock. The doctors told me they could fall slowly, or it would happen very quickly. When the liver stops working, I stop working. It's simple.
The first thing we did Kristen and I did was to tell our three boys. We did not want them scared or overwhelmed by focusing on the operation. About the potential for a positive outcome. My thirteen-year-old has a good sense of what it means and well understands it. The 11-year-old is asking a lot of questions. And I thought my eighteen year old was somehow in the periphery of everything. But one day, when he and Kristen were alone, he asked her if Dad would die.
I'm now on the list for transplanting people with fatal liver function in the final stage. The reality is that the only solution for me is the transplantation of live donors, which would include surgeons who would take about half of the healthy liver and used it to replace my cirrhotic liver. (The liver regenerates to a normal capacity within six to ten weeks, depending on the person's health and fitness level. The operation lasts from five to seven hours, and the recovery time is from six weeks to three months). Donors must be between the ages of 18 and 60, so my mom and dad, and many aunts and buddies, have come out.
My blood group is "O", which limits my potential list of donors for about one third. My sister has my blood type but is not a suitable candidate. Kristen also has a "O" blood type but doctors will not consider it until it becomes the last choice. They do not want two parents with small children going through surgery – and recovery – at the same time.
My best options are friends and family, but I had to go further. I did not want to talk one at a time because it puts people in a very uncomfortable position. Everyone wants to help – and it is wonderful to say – but it is still a very big decision. People must be physically fit, but they must also be mentally prepared. Everyone has their own obstacles.
I sent a letter explaining my situation and I started up a site so that people could be educated in their time. Surgeons say I have to find as many potential donors as possible. I know I will not survive if I do not find a match, but I try not to think so far.
Perhaps the hardest thing is to know where I am in the appraisal process. I have no idea who went ahead and who could be a strong candidate – if it does exist at all. Doctors say that for every seven donors going forward one can be an effective donor.
It is not easy to be in that position. Some of my A-type friends say that they will "not know" how to exclude them. I also do not know how long I will have to look for a donor. The withdrawal in the liver function can be fast or slow. All I can do now is to stay healthy.
It was not easy, but my friends, family, and even a full party were great. Human kindness dissipated me. I'm a pretty positive person and I'm sure it's doing it in my life through which I will live.
Mark Gregory is a 44-year-old entrepreneur living in Toronto with his wife and three children. Its a web site www.ReStartMark.com
– As Gayle MacDonald said. This interview is arranged and summarized.