Jenny’s Story

It began six years ago with a conversation I had with a surgeon. He had just removed my gallbladder and we were talking post-op about a recent case of his. A young couple had been cycling when the husband crashed and hit his head. He was rushed to the hospital and was declared brain-dead a few hours later. He had signed his donor card, but his loved ones did not wish to have his organs retrieved to be transplanted, so the hospital abided by their wishes.

My surgeon said that while he respected the family’s decision, he couldn’t help but feel a loss for the people waiting for donated organs. The situation may have been different if the young man had talked to his family about his wishes. He said the majority of the patients on the donor lists were on dialysis and were waiting for a kidney transplant. In the back of my mind, I decided that if the situation ever presented itself, I would be a kidney donor.

Dialysis is punishing treatment for renal failure: It usually means more than 16 hours a week attached to a machine that filters impurities from the blood. It is a life-altering remedy that often causes side-effects. The alternative treatment is to receive an organ donation, and the wait is anywhere from four to seven years. Currently there are approximately 4000 Canadians awaiting an organ transplant, and of those, almost 3000 need a kidney transplant. In 2003, 250 Canadians died waiting for an organ transplant.

Shortly after that conversation, a friend of mine killed herself. I felt a new empathy for people who were losing their loved ones well before their time and I decided to enlist to be a kidney donor. I expected it to be similar to the bone marrow registry that I was already on, but it wasn’t simple at all – Canada did not have living donor registry. There was no system in place for someone to offer an organ and no way to negotiate what I would later discover was lengthy list of appointments and tests in order to donate to someone who was not a relative.

Then, in May of 2003, I read an article about Welland, Ontario’s Sheryl Wymenga, who donated her kidney to a stranger in the United States. There was one line in the article mentioning that Canada still did not have a living donor registry, and mentioned, a living donors website.

I went to the Living Donors Online site and the first post that I read, and the only one that I responded to, was written by Mike Fogelman: “Need a Kidney, A+ Blood Type ….. I’m a 52 year old living in Toronto, Canada. I’m the father of one and I have an unfortunate family history of renal failure. I have lost one aunt to the disease, presently have one aunt and a cousin on dialysis and my father was on dialysis before he received his transplant which gave him 11 more years of life. I am willing and able to travel and hope to have all my pre-transplant tests etc. completed by July 2003. Thank you for reading this.”

My blood type is also A positive, so I decided to contact Mike to offer to be tested. It was an impulse to help that I have never second-guessed. The hours before I emailed him I read about the procedure of donating a kidney and ran through the testing and operative scenario. I considered each step: blood work, ct scan, ex-rays, physicals, psych exams etc. I also decided to withhold any judgments. That would be a test. What if I didn’t like the guy? Like him or not, I was in the position to help, so I’d help.

I emailed Mike and his partner Valerie, saying that I had the same blood type, was also in Toronto, and offered to be tested to see if we were a match. We exchanged cursory emails, phone calls and then met for lunch. It had all the elements for a big ball of weird: Internet conversations, a blind meeting and an offer of help from a stranger with nothing asked for in exchange. Instead, it was the first meeting of people who would eventually become friends and embark on an arduous process that Toronto General Hospital agreed to take on as one of the first “altruistic” living kidney donations in Canada.

We had lunch downtown. Before we had met, Valerie had described Mike as having a goatee and shaved head, sort of like a biker whose day job is a lawyer. I cringed waiting for her to tell me that he was familiar with the Don Jail. He isn’t. He works for the Ontario Government as an advocate for children who are wards of the province, and also conducts private counselling. He is well-loved by everyone around him. My kidney would be going to a good home.

Valerie, like me, is in her 30’s. She is a therapist who also works with children and has the same kind qualities as Mike. She has been with him for over three years, well before he fell critically ill. She told me in private that Mike had been living with his illness as if it wasn’t killing him. She was always in fear that he would eventually take one day off work, then another, and then give in to the illness.

For Mike’s blood group, waiting for a kidney from a deceased person would take anywhere from five to seven years, but his health was failing too quickly too survive that long. His loved ones who stepped forward to offer their kidneys had been ruled out as possible matches. In May, 2003, he read the same article mentioning Living Donors Online that I’d seen, and he posted his message.

Mike told one of the health care professionals who was treating him about my offer and requested that she set up the initial testing. She told him that to be a kidney donor in Canada, you had to be either related or a close friend of the recipient and there were no other options, but she would investigate the possibility of an “altruistic stranger” donation. Days later she told Mike that she had contacted transplant hospitals in Canada and the US to discuss the case. All of them said that no Canadian hospital would entertain the idea. She suggested that Mike and I lie and say that we were long-time friends.

Mike and I didn’t consider it. Mike and Valerie asked her to make a formal request to transplant hospitals. Toronto General responded, saying that they would consider the case.

One of Toronto General’s transplant coordinators called me in September with some preliminary health questions and to tell me that the transplant team had formed an “ethics committee” to look into the case. The team was made up of doctors, nurses, psychiatric and social staff, and a bioethicist. They all work with the medical standard “to do no harm”. As with any living donor, they would be taking a healthy person and would be putting them at risk for the life of another person. With a donor that is a loved-one to the recipient, they can balance the risk to the donor with the benefits they receive by helping the person they love. In my case, they couldn’t justify the risk with the possible gains – I would have help them do that.

In December, the committee decided to take on the case. Mike and I went in for the first round of blood tests to determine compatibility. The tissue-typing and cross-match tests came back positive on December 24. I was a compatible donor.

In the weeks that followed, I had appointments with a psychiatric nurse, a psychiatrist and a bioethicist. All of them had to determine that I was not being paid for the donation, that I was not being coerced, and that I was psychologically strong enough to go through the operation. I had to explain how this donation would benefit me – how the hospital could justify risking my life to help Mike.

I didn’t have very compelling answers. I knew that I was healthy enough to donate my kidney. I was in a more fortunate position than Mike. Kidney disease or other diseases leading to kidney damage did not run in my family. I come from a large extended family, and I was confident that if anyone of us required a kidney donation in the future, everyone would step forward to donate. I would be pleased if I could help a family so that they would not lose their loved one. It felt like the right thing to do.

There are risks with a kidney donation that are associated with any major operation, but a person can still live a normal, healthy, long life with one kidney.

The hospital approved me as a donor on May 10, and the operation was scheduled for June 11th.

My best friend Dianne and Valerie waited with me in pre-op in the transplant wing of the hospital (Mike was having pre-op treatment in his hospital room). I was the only living donor that day in the ward.

The 20-person team for both of our operations were led by renowned surgeon Dr. Michael Robinette. My surgery was from 9 a.m. to 2 p.m. I woke up after the operation feeling disoriented and in excruciating pain. Once I could accurately tell the nurse what planet we were on, she taught me how to press the button attached to me that would give me a shot of morphine.

Mike’s operation was from 3 p.m. to 6 pm, and the kidney functioned properly as soon as it was connected. His kidneys remained in place and the new kidney was grafted into his stomach, just above his groin area. Mike woke up and couldn’t believe that he had been operated on. He felt great. Two days following the operation he completed the Saturday Globe and Mail crossword puzzle for the first time ever.

I went home three days after the operation, with four 2 cm incisions in my stomach and an 11 cm incision in my bikini area. I was in the most severe pain for the first week and a half following the operation. After the 10-day mark, every day was markedly better and I resumed to my normal activity level two weeks following the operation. It took my remaining kidney approximately five weeks to take over the full function of both kidneys, and today all of my tests regarding kidney function are normal.

Mike was in hospital for ten days and now, three months later, he is still returning once a week for tests, clinics and doctor visits. He takes 28 anti-rejection and other medications every day. Despite the cost of the meds, the cost of the operations and hospital stays, the transplant is still less expensive to Ontario taxpayers than to keep Mike on dialysis.

The most frequent questions people ask me are if I was paid (no) and if I had to do it all over again, would I? (Yes.) And was I afraid? (Yes.) I had thought I’d get over the fear at some point but instead I just lived with it.

When we were at the hospital, Valerie split up her time between Mike’s hospital room and mine, taking care of us both. Mike and I couldn’t get up from our beds on the morning after the surgery, so we didn’t get a chance to see each other. While I slept, Valerie came into my room and wrote a note on the white-board across from my bed. It was the first thing I saw when I woke up in the afternoon:

“Jenny: Mike says: ‘I feel reborn.'” Thank you.

Toronto General, more than me, deserves credit for that.