The gift of a lifetime
You never expect that your own life will need saving. I have always thought more about saving someone else’s life than my own – running into a burning building to pull out a young child, pushing a grandmother out of the way of a bus, or, best of all, rescuing a beautiful woman from drowning. Basically, being a hero. As it turned out, I was the one who needed a hero, and not in the split-second, react-to-a-crisis type of scenario, but more the long-enough-to-get-really-terrified type of situation.
Before I tell you more, first a little bit about me. I have been on faculty at Queen’s for 20 years now, a time that seems to have flashed by as I have been busy teaching, doing research, and being occupied by all of the diverse things that make up a professor’s life. A significant number of Review readers will actually have been taught by me, and I hope that their memories of me are as fond as mine are of them. I have been at Queen’s long enough that many of my former students are now colleagues, in turn teaching in universities around the world.
My particular area of research is now focused on breast cancer, although I have always been dedicated to cancer research of some form. My path to this career was influenced by Dr. George Setterfield, a brilliant biology professor I had in second year at Carleton, and by the premature deaths of both my parents from cancer.
Researching breast cancer is both a frustration and an incredible reward – frustration from not making as rapid progress as everyone wants, but rewarding because I work with dedicated and caring men and women from all walks of life who are committed to decreasing the burden of this disease.
For most my life I had known I had some sort of liver disease. Tests done when I was an undergraduate came back with elevated liver enzyme levels, but despite numerous tests and liver biopsies, nothing was ever found to be the root cause of my problem.
I then moved on to graduate work at McGill, where my doctoral studies involved work on a virus that causes cancer. After a post-doctoral fellowship in Switzerland, my beautiful wife, artist Sally Milne, Artsci’80, and I settled into life in Kingston.
Tick, tick, tick … A number of years later, my doctors, Jerry Simon, Meds’62, and William Depew, Artsci’69, Meds’73, decided things were getting serious, and after a battery of new tests and the excising of small bits of various parts of me, they made their diagnosis.
When someone tells you that something is going to happen within 10 years, even if it involves you dying, it doesn’t really sink in.
“There’s good news and bad news,” Simon said to me. (Don’t you just hate it when someone says that?) “You’ve got primary sclerosing cholangitis. It isn’t curable, and will lead to eventual liver failure.”
“Was that the good news or the bad news?” I wondered.
“But,” he went on, “liver transplants are fairly routine these days, and you’ll need one within 10 years.”
I was still not sure which was the good and which was the bad news. It turned out that prognosis was right, almost to the day.
When someone tells you that something is going to happen within 10 years, even if it involves you dying, it doesn’t really sink in. Life goes on. Terms begin, terms end. Research grant applications get written. Research grants get rejected. It all seems so very normal. But gradually things did change.
My weight increased in odd ways. My energy waned. Veins started to bulge that shouldn’t have bulged. My skin turned yellow. I begin to itch, and itch, and itch. Things were no longer normal. Then I spiked a high fever, and so I marched back to the hepatologists.
“Bacterial cholangitis,” Dr. Cathy Lowe told me, “It’s time to send you to Toronto.”
Now, I think Toronto is OK. It has some nice restaurants and some great museums, so I don’t mind the occasional trip, but in this case it meant a visit to the Multi-Organ Transplant Unit at the Toronto General Hospital (TGH), not so much fun. My newest hepatologist is Dr. Therapondos, a Scottish-accented Greek (trained in Edinburgh), and I met my surgeon, Dr Paul Greig, who instantly reminded me of the mad professor from Back to the Future. Both inspired confidence, but also fear as the uncertainties of the process unfolded.
After many, many tests, I was admitted to the cadaveric donor transplant list. This is the list that you always hear about. “So and so spent so many years on the list, and then died waiting.” The “problem” and the appropriateness of the list is that you have to be the sickest one on the list to qualify for the next operation. And those people are sick. Many die before an organ becomes available, or else they become too sick to even undergo the surgery.
Not living in Toronto, I was required to appear at TGH within three hours of a call, to be operated on if I was next. I was given a pager (very exciting) which I was told to test regularly – something I did 16 times in the first week. Hey, you never know!
My pager never, ever rang. The alternative, Sally and I were told, is a living liver donation.
Many people don’t realize what a resilient and intelligent organ the liver is. Having spent a significant part of my early career studying liver regeneration, I was well aware of the failings of my own liver in not repairing the damage done to it by my disease. The bottom line is that someone can donate up to 70 per cent of his or her liver, and it will grow back to its original size. The same is true of the donated part of the organ: it will grow, or shrink, to match the size of the person it is in. In my case, the incredible advantage of a live donor was that once someone was found the operation could go ahead, before I got too sick. The key here was that “someone.” But who?
I have been married for 22 years, and my wife and I had already gone through more than a lifetime’s worth of trials and tribulations. Our love for each other has simply grown over the years, and we are as close as two people can be. Sally is an accomplished artist, and she has found a great deal of fulfillment in her work, which is expressive, colourful, and as full of life as she is. Bravely, she took on the task of finding a donor for me, something I could not bring myself to do, as I battled with the moral issue of asking someone to make as much of a sacrifice as liver donation requires.
Sally launched into the search with commitment and hope, spreading the word of my need and the urgency of my situation. Many family members and friends came forward, but numerous criteria go into finding a suitable match.
The first and foremost is blood type. Mine, being O, is relatively common, but after that a variety of anatomical and health issues come into play. Screening is intense, but the risks to the donor are real and significant. It is, by any definition, a major operation. Because of the intense privacy that shields donors from recipients, we heard bits and pieces from various friends, but usually only that the next person in line had been called.
Finally, after I’d been almost a year on the list, there was success. A woman named Corinne Burke, who is a friend of our good neighbours Martha Bala, Arts’73, Meds’84, and her husband Nick Bala, Law’77, was found to be a match. Celebrations ensued. Several weeks later, our suspicions were aroused when Corinne was called back for more screening. And then a disaster. Additional reviews had identified what was termed “an issue,” and she was deemed to be ineligible. We collapsed into despair, as our luck seemed to fade.
At this point, Sally concluded we were running out of people on our list and that additional appeals must be made. She approached our friend and former neighbour Ken Cuthbertson, Artsci’74, Law’83, Editor of the Queen’s Alumni Review, and, soon after, a notice appeared in the Winter 2009 edition of the magazine. You may have seen or even read it; I know a lot of people did, and they wanted to help.
We got e-mails from around the world – many apologizing that they were the wrong blood type; even more got in touch to say they regretted they were too old (the cut-off, is 60). One note came from a woman who was three months pregnant. “Can you wait?” she asked.
The response from Review readers was overwhelming, awe-inspiring, and humbling. We often forget how generous people can be, and that when called upon they will reach out in whatever way they can to help, particularly when the need is dire. Our spirits were buoyed by this, but we still didn’t know whether this response had translated into more people being added to our list or not, as all disappeared under the confidential blanket of the donor program.
A short while later, Sally received an e-mail from another alumna, Sarah Crosbie, Artsci’01, who had read about my plight in the Review. She had recently joined the on-air staff at local radio station K-Rock 105.7, where she co-hosts the morning show with Darryl Kornicky. They wanted to help and were even willing to dedicate a morning show to finding me a donor. Sally bravely agreed to go on the air, and when she did she was a pillar of strength, poise, and eloquence. I spent the morning curled up in a ball in our bedroom, listening to the radio, and trying not to expire from a mix of angst and embarrassment. Not only did they do the show, but Sarah and Darryl kept it up all week, mentioning the appeal time and again, posting it on their web site, doing their best to get the word out.
Once again people responded in a gratifying outpouring of community sympathy and support. A couple of weeks later we got an e-mail from a woman in Kingston. Her name was Sherrie Edmunds. We did not know her, but in two short sentences she told us that she was going to Toronto to be screened. Our jaws dropped at the idea that a complete stranger, with no connection to us, would be willing to consider this, much less actually go ahead with it. Our jaws hit the floor when we found out there was a match and that surgery was scheduled for the end of the summer.
Once again the veil of confidentiality descended, and we had minimal contact with Sherrie. The operation was finally scheduled for August 10. Two days in advance, Sally and I packed up our lives and moved into a condo that’s within walking distance of TGH. The surgery was to be on a Monday, and we were having lunch with my sister Karen on the Sunday when the call from hell arrived. My surgeon informed me that the surgery was cancelled; an “issue” had come up with the donor, and they didn’t know if it was resolvable.
We slunk back to Kingston, as devastated and discouraged as two people can be. As has happened so many times before, we clung to each other for support, hope all but extinguished. But we were not off this roller coaster yet.
As the week progressed, a glimmer of hope presented itself. In accordance with their extreme caution with the donor, the final review had revealed that an important test had not been done, resulting in the cancellation. However, the test results turned out to be fine and, after being rescheduled, and then bumped forward, we were given a new surgery date of August 24.
We headed back to Toronto once again, but there was still one last hurdle to clear. The operation on Sherrie was to start first, and one final compatibility test would be done while she was on the operating table. If the results were wrong, it could still lead to cancellation of the transplant. Nervous relief poured through me when my surgeon, Dr. Ian McGilvray (Dr. Greig ended up performing the operation on Sherrie), came in to have me sign the surgical releases. Fade to black.
Sally headed to the waiting room to worry out the many hours of the operation. There she met Sherrie’s mother, Kathy Edmunds, and learned that Sherrie is 22 years old. I don’t know about you, but the last thing I would have thought about at that age was being a liver donor. Paul Greig came out after eight hours of surgery with the all-clear for Sherrie. Having started later, my surgery dragged on till early evening. Finally, Ian McGilvray arrived to tell Sally that my new liver was already working and that it had been – appropriately for me – a textbook operation. When the nurse came out of the Intensive Care Unit to see Sally, she announced, “Chris is awake, but a bit confused. He said, ‘I guess I’m not in Kansas anymore.’ ” Sally immediately knew I was doing OK.
Here was the wonderful person who had saved my life by endangering her own, and who committed to the same pain and recovery that I would have. But while I had to do it or die, she chose to do it, knowing full well that it would mean months of pain, discomfort, and restrictions.
Day One post-transplant was hazy, but morphine immediately became my new best friend. On Day Two the physiotherapists arrived for my first walk. Trailing tubes, bags, monitors, a walker, and as much dignity as I could muster, we set out to conquer the 150 feet around the ward. Coming around a corner I saw a young woman in the identical situation coming towards me. I knew it was Sherrie, and she looked at me with the same recognition in her eyes. Despite all the tubes, she was beautiful, a curly-haired angel. Here was the wonderful person who had saved my life by endangering her own, and who committed to the same pain and recovery that I would have. But while I had to do it or die, she chose to do it, knowing full well that it would mean months of pain, discomfort, and restrictions.
How do you express the thankfulness, appreciation and joy that well up in you at a moment like that?
The answer is that you cannot, because words are no longer strong enough to convey that kind of emotion. We simply hugged, clinging to each other, and crying. Two strangers seconds ago, now life-long friends, more than friends because this is a connection that transcends all bounds. I said thank you over and over again, but it seemed so inadequate. I also saw the pain on her face, and I knew what she was feeling, because I felt it myself, and I was overwhelmed by guilt for putting her through this. I asked, and she gave, unselfishly, freely and without regret.
And now, as the months of recovery continue, a second gift is being given to us. It is a special time as Sherrie and I recover with Sally’s help, and the three of us become closer and closer. Sherrie is as wonderful as you would expect someone to be who has done what she has done. We spend more and more time together and, as she puts it, “It was as if I had been waiting my whole life to meet the two of you.” We feel the same.
Our story has generated quite a bit of attention, and everyone asks Sherrie the same basic question, “Why?” And her answer, the most humbling of all the things she might say, is: “Because when I heard Dr. Mueller needed help, I couldn’t not do it.” That sort of sums up the kind of hero she is, doesn’t it?
How do you thank someone who has saved your life in this way? I still don’t know, but now I have a new life to try finding one.
POSTSCRIPT: Both Chris Mueller and Sherrie Edmunds are healing and doing well. Chris, who turns 52 the last week of February, hopes to be back in his lab at Queen’s early in the New Year, while Sherrie is getting on with her own life. It took eight weeks for her liver to regenerate itself, and she is now back to refereeing minor hockey games and hot yoga. She continues to visit the Milne-Mueller household and is a regular dinner guest. If all goes as planned, Sherrie hopes to have a career in law enforcement.
Chris Mueller a Professor of Biochemistry and Pathology in the Cancer Biology and Genetics division of the Queen’s Cancer Research Insitute.
Canada is one of the few countries in the developed world without a national, coordinated system for organ and tissue donation and transplantation (OTDT). The health care system is at capacity and is struggling to cope with current needs and projected future demands. In 2008, there were more than 4,300 Canadians on an organ donation waiting list; of those, 215 died without getting the transplant that could have saved their lives. The numbers have only increased in the past year. In 2009, 579 people in Canada were on the waiting list for a liver donation.
In a bid to correct the problems surrounding organ donations, in August 2008, Canadian Blood Services was given a mandate by federal, provincial and territorial governments (excluding Quebec), which agreed to spend $35 million to develop – in consultation with stakeholders, the public, and the medical community – a recommendation for a new national system for Organ and Tissue Donation and Transplantation (OTDT).
When an initial stakeholder consultation was held in September 2008, 130 representatives from transplant, donation, administration, Intensive Care Units, Emergency Room, tissue banks, Organ Procurement Organizations, patients, donor families, living donors, government and ethical/legal organizations met. It was recommended that OTDT could best be served by a nationally coordinated system, but there were differences in opinion on roles, responsibilities, and technical details of how any such system should operate. As a result, last May, three committees were struck: a Steering Committee made up of 12 prominent experts in public healthcare policy, and two expert committees; one is focusing on organs, the other on tissues.
For more information on organ transplants, please visit: