Mark Gregory with his family, from left: Bennett, 13, Hewitt, 8, Cooper, 8 and Kristen Gregory at their home in Toronto on March 28, 2019.Christopher Katsarov/The Globe and Mail
My wife and I were just starting our family and we’d bought our first house. A new chapter in our life was starting, and I had applied for life insurance.
That was 15 years ago. I’ve always been pretty healthy and I figured it was a routine thing. I was denied and I assumed they’d made a mistake. The letter from the insurance company said something like: “We’ve run some tests and you haven’t qualified for life insurance. You should contact your doctor.” I was like, “Oh, yeah, right!”
But I did. I went through a battery of tests and the doctors told me my liver enzymes were off the charts (high) for someone my age. Eventually I was diagnosed with a rare liver disease called primary sclerosing cholangitis (PSC) that slowly shrinks the size of the bile ducts and reduces normal liver function. My doctors told me I would eventually need a liver transplant – probably some time in my mid-40s – but until then, I should just enjoy life.
That advice was good for me. I’m a pretty positive person and I decided to live life as normally as I could until the time came.
Just before Christmas – I’m 44 now – I went in for one of my regular checkups. My tests are always abnormal, but this time they’d changed dramatically, and for the worse. I needed a liver transplant. I knew the news was coming one day, but it was still a shock. The doctors told me I could decline slowly, or it will could happen very quickly. When the liver stops working, I stop working. It’s as simple as that.
The first thing Kristen and I did was tell our three boys. We didn’t want to scare or overwhelm them so we kept it focused on the surgery. On the potential for a positive outcome. My 13-year-old has a good sense of what it all means and he took it pretty well. The 11-year-old asks a lot of questions. And I thought my eight-year-old was kind of on the periphery of it all. But one day, when he and Kristen were alone, he asked her if Daddy was going to die.
Mark and Kristen Gregory discuss evening plans with their sons.Christopher Katsarov/(Christopher Katsarov/The Globe
Now, I’m on the transplant list for people with fatal end-stage liver function. The reality is that the only solution for me is to get a live-donor transplant, which would involve the surgeons taking roughly half a healthy liver and using it to replace my cirrhotic liver. (The liver regenerates to normal capacity within six to 10 weeks, depending on the person’s health and level of physical fitness. The surgery takes five to seven hours, and the recovery time ranges from six weeks to three months). The donors have to be between 18 and 60, so my mom and dad, and many aunts and uncles are out.
My blood type is "O" which limits my potential donor list by about one-third. My sister has my blood type, but she is not a suitable candidate. Kristen also has type "O" blood, but the doctors won’t consider her until it’s more of a last resort. They don’t want two parents with small children going through surgery – and recovery – at the same time.
My best options are friends and family, but I’ve had to go further afield. I haven’t wanted to do one-on-one conversations because it puts people in a very awkward position. Everyone wants to help – and that’s wonderful to say – but it’s still a very big decision. People have to be physically prepared but they also have to be psychologically ready. Everyone has their own hurdles.
I sent out a letter, explaining my situation, and I’ve started a website so people can educate themselves in their own time. The surgeons say I need to find as many potential donors as possible. I know I won’t survive if I don’t find a match, but I try not to think that far ahead.
Perhaps the hardest thing is not knowing where I’m at in the evaluation process. I have no idea who has stepped forward and who might be strong candidates – if any. The doctors say for every seven donors who step forward, one may be a workable donor.
Mark Gregory with his wife Kristen at his home in Toronto.Christopher Katsarov/The Globe and Mail
It’s not an easy position to be in. Some of my Type A friends say the “not knowing” would drive them crazy. I also don’t know how long I will have to look for a donor. The drop-off in liver function could be fast or slow. All I can do right now is try to stay healthy.
It hasn’t been easy, but my friends, family and even complete strangers have been great. People’s kindness has blown me away. I’m a pretty positive person and I’m certain this is an event in my life that I will live through.
Mark Gregory is a 44-year-old businessman who lives in Toronto with his wife and three children. His website is www.ReStartMark.com
– As told to Gayle MacDonald. This interview has been edited and condensed.
