Interviewed by Michelle Ho, Simi Juriasingani, and Elena Kum
Doug Ferguson suffered from a liver disease that caused chronic inflammation for a number of years before being diagnosed with hepatic cancer. From undergoing chemotherapy to meeting the liver transplant requirements to undergoing two liver transplants, Doug has experienced a lot over the course of his journey. Since his transplant in 2014, Doug has dedicated himself to transplant advocacy. We recently had the opportunity to speak to him about his experience.
Can you describe your journey from diagnosis to transplantation and where you are today?
Doug: I had a pre-existing condition, basically a chronically inflamed liver for a number of years. I had no symptoms, and I simply took a medication and went to my liver specialist once a year. I was sitting at my desk in January 2014, when my liver doctor called me. He said, “You have a tumour that’s seven centimetres in size.” That was tough to hear because I lost my first wife to liver cancer in 2001. I went in to speak with him and his colleagues and they told me that a transplant would be the best alternative for me. Then I went to the University Hospital in London in March 2014 to do the work-up to determine if I qualified for transplant. I did in every way except one: the tumour had grown from 7 cm to 12 cm, about the size of a fist, which disqualified me.
At that point, I thought I was not going to make it. But they tried a chemotherapy on me called trans-arterial chemoembolization (TACE). I had two TACE treatments in March and July 2014, and it shrank the tumour substantially. It shrank to the point where I was placed on the transplant waiting list in September 2014 and I was given a pager for the call that a liver was coming. Fortunately, I had no symptoms and was able to continue working.
I had one false alarm. I was called in but the liver wasn’t suitable. On the afternoon of November 24th, 2014, I was working at my office when I got another call from University Hospital. We arrived in an hour or so, but they ended up sending me home because high winds had prevented the helicopter intended to pick up the donor liver from taking off. After a restless night, I went in again around noon the next day and underwent surgery that evening.
The transplant failed on the table. Somehow it clotted when they put it in. The surgeons took it out twice, rinsed it off, put it back in, and it just didn’t work. My surgeon told me that he’d never seen that before. My family was told I had 24 hours to get a second transplant, which we all know doesn’t happen – and it didn’t happen. I was unconscious the whole time. 24, 48, 72, 96 hours went by… no liver. On November 29th, when I was close to death, the transplant team got word that a second liver was available, and the second transplant took place in the early morning hours of November 30th. I survived. My family called that day “Miracle Day.”
The transplant worked but they had to put me into an induced coma for 10 days. When I woke up, I was totally disoriented. I had lost my core muscle strength. I was so weak that I couldn’t even press a button for the nurse. I was totally helpless. It’s like being paralyzed in a way and it took a long time for that to pass.
University Hospital has a physiotherapy facility right there at the transplant unit just for transplant patients. The first time they wheeled me in there, I was so weak I couldn’t lift my head. I continued increasing my activities every day. After two months when I could climb one set of stairs, I was discharged from the hospital. I came back to work at Western Law part-time in April 2015, then full-time in June. In August 2015, I hit my first hole-in-one at golf, which is another miracle because I’m not very good at golf. In January 2016, a year after the transplant, I returned to playing hockey. I’m very lucky to be here.
You were in a coma between the first and second transplant – what were your first thoughts when waking up from the second transplant and finding out that you had to undergo two transplants?
Doug: Well, in my coma I remember being angry because no one was telling me what was going on. I guess I was sort of semi-conscious. When I woke up, I didn’t realize what had gone on, but I knew something had gone sideways. Later on, I was told that I had been hours away from dying. My family had to start planning for that and they had made some decisions for my funeral.
During the recovery, I remember my sense of time was off. I thought it was later in December than it really was. I couldn’t eat much. I lost 40 pounds while I was in the hospital. But once I woke up, I never doubted that I was in any danger. I knew I was going to live. It never occurred to me that something might still happen. Of course, I was fine. In mid-February, three weeks after I got out of the hospital, I went to my first public event – a fundraiser for the hospital. I also gave a speech at a Liberal Party riding association meeting in early March. I was still so weak. I could barely walk. But I was able to walk into the room, give my speech and sit down. I’ve never looked back. We’re now at five years and I’m back to normal.
I was warned, “Your immune system is compromised because you have to take anti-rejection drugs for the rest of your life.” But I’ve only missed maybe two days of work last year due to illness. I’ve been very lucky that way as well. My wife and I have traveled extensively. I got out of the hospital in January 2015 and that September, we traveled to France for two weeks. In 2017, we went to South Africa for a couple weeks. We also went to Australia in 2018, so this hasn’t held me back whatsoever.
Every day I think about what happened and how lucky I am. You will see me tweet or post on Facebook something every so often about organ donation, and I’ll still continue to do that. That’s also why I wanted to do this interview. I want to do anything I can to promote organ donor registration.
What do you think is the biggest thing that’s changed since your transplant for you personally?
Doug: The biggest thing that’s changed is the sense of gratitude that I’ve got. After surgery, I said to my doctor, “I owe you my life. But what made you do that full workup that discovered the tumour?” He said, “You know what? I’m kind of obsessive-compulsive and I just thought I should have a look.” If he hadn’t done that, I’d be dead today. That’s the scary thing about liver cancer or bowel cancer – there are often no symptoms until it’s too late. My first wife had a liver tumour that spread to the bowel. She died within seven weeks of her diagnosis, leaving me as a single dad for five years. I had no symptoms either. That’s how close it was for me. It’s like rolling a dice and the dice came up in my favour in a whole bunch of different ways.
The other thing I learned from the death of my first wife is that life can be short. You never know when something could happen. It could be an accident or an illness for you or a loved one that can change everything. I think the biggest thing I can take from my own experience is to live life large. Don’t wait to do the things you want to do. If you want to travel, travel. Don’t wait till you retire. Do what you can while you can.
Also, you should appreciate your family more. I’m very lucky that my family was there for me and they took great care of me. My kids were there with me every day of my life and the hospital staff saw this as being unusual, which surprised me. A lot of folks who go through this don’t have that kind of support. I can’t imagine what it would be like going through this without support. If I were living on my own, I don’t think I would have ever survived.
Our health care system, especially our system in London, is one of the best multi-organ transplant units in the world. I don’t think Londoners know that or appreciate it. I suspect that if I had been somewhere else, I would not have survived. As for our Canadian health care system, if you need care, if you’re seriously ill or injured, you get care immediately. We’re very lucky as Canadians that we get that.
Do you have any advice that you would give to someone still waiting for an organ transplant?
Doug: Spend time with your family. I spent a lot of time with my daughter, for example. That summer, we played a lot of golf together. Do things you want to do but don’t feel sorry for yourself. That’s not how you want to deal with things. Do some good. Help others while you’re waiting. I think that will help you handle the strain because waiting is a huge strain. You never know when the call is going to come and you don’t know if it’s going to be a match. You don’t know how it’s going to go or what the aftermath might be. I belong to a Facebook group of transplant survivors and I see some of the difficulties that some of these folks have gone through, both before and after the transplant. It’s tough. It’s really tough. But there’s lots of people around to help you. In fact, I’ve always been willing to talk to people who are waiting so that they know what to expect. For example, these anti-rejection drugs that I take every day, it’s not a big deal. It’s a very small price to pay for staying alive.
Keep your hope is the best advice I can give. When I thought I was too ill to get a transplant, I didn’t tell my friends that I had cancer. I didn’t want to do that because I didn’t want people to ask, “How are you doing?”, which basically means “How’s the cancer?”. I didn’t want to go through that and if I went to a party, I didn’t want people to say, “Poor Doug.” I didn’t want the sympathy. I wanted to keep life normal and to compartmentalize. Compartmentalize the disease and just carry on with life as normally as possible. That’s the most important advice I would give to folks on the list: to carry on.
You’ve served with the Trillium Gift of Life Network and the Consent and Capacity Board for the Ministry of Health. Did you ever encounter any debates on organ donation?
Doug: No, we didn’t. But as a private lawyer, I came across a situation where I wasn’t on board. I represented the spouse of an individual who had a stroke. The doctors believed that he wasn’t going to survive and recommended that he’d be disconnected from life support. His wife wasn’t ready to do that. The doctors applied to the Consent and Capacity Board and we agreed to let it go for a couple more days. This gentleman did pass away on his own and it’s too bad we didn’t talk about organ donation.
It doesn’t matter how old you are. You can be 90 years old and still be an organ donor. My point is: don’t wait until your loved one is in the hospital or you, yourself, are in the hospital in a life-threatening situation. Make your decision now. You don’t want to put pressure on your loved ones in a bad situation. Make the decision for them. Register to donate – and this is key – tell your family what you want and that you’ve registered, so if something happens they know that you want your organs donated and they’ll follow your wishes. Register and talk to your family.
What are your thoughts on presumed consent organ donation, which some European countries have implemented?
Doug: I think it’s worth looking at. I don’t know enough about it. Right now, the Trillium Gift of Life Act, which governs the transplant system, says that if you register your consent, it’s binding. But some families overrule their loved one’s wishes for whatever reason. Sometimes they claim that their loved one withdrew their permission verbally, but some just don’t want to do it. I think the law says if you register, that’s it. I hope families respect their loved ones’ wishes because one person’s organs can save up to eight lives and wouldn’t they want their loved one to be a hero? To me, helping up to eight people live is like being a hero.
As far as implementing an opt out system goes, the devil is in the details. For example, what if there was a verbal opt out, is that acceptable? Does it have to be in writing? I think we’d have to work through that. Nova Scotia has already done it. But I think it’s worthwhile for other provinces to have to look at it. If it’s going to save more lives, then I think it’s the right thing to do. But we need to know that before we jump.
What are your thoughts on organ donor registration in Ontario?
Doug: As someone who’s been on the board of Trillium Gift of Life Network, which runs the transplant system in Ontario, one of the areas I’ve focused on is donor registration. In Ontario, we’re at about 33% of eligible people have registered and yet the polls show that something like 90% of people approve of organ donation.
So why haven’t they registered? When you go to renew your driver’s license or your health card, you’re asked if you want to sign up to be an organ donor right there at Service Ontario and yet, it just doesn’t happen. But I’m sure if your loved one needed an organ, you would certainly want them to have a donor, right? Donating your own or a loved ones’ organs can make passing meaningful. There’s some good that comes out of it and it’s a very moving experience for both the recipient and their family. I’m living proof of that.