2023-06-18 09:00:00
In recent years, Sylvain Bédard has seen his transplant friends die one after the other. Carried away by cancer or mild infections for ordinary mortals. After surviving two heart transplants, it’s his turn to be struck down by metastatic cancer. “It’s part of the game, Unfortunately. »
He was first diagnosed with skin cancer in 2020. Metastases were just discovered in his lungs. “I have a Damocles sword above me,” said the 55-year-old. He is far from the only one to find himself in this difficult situation. Four of his friends, who have also undergone a transplant, are currently battling skin cancer.
PHOTO FRANÇOIS ROY, THE PRESS
Sylvain Bedard
People who have had an organ transplant must take so-called “anti-rejection” drugs that inhibit their immune system for the rest of their lives. These treatments help prevent the body from rejecting the transplanted organ, but increase the risk of infection and cancer.
However, it is a taboo subject, he believes. The recipient must always remain grateful for the miracle of medicine that kept him alive. “We talk about it among ourselves, but the others don’t want to hear it. You should never talk about death, the risk of complications, you should always look in a good mood,” he says.
“I lost my adolescence”
In 1980, Sylvain Bédard’s sister died suddenly of a heart attack at the age of 18. She unknowingly suffers from a genetic heart muscle disease called hypertrophic cardiomyopathy. “I lost my adolescence. I lost my sister at 13, and a few months later I was told I was going to die like her around 18 or 19,” he says.
Over the years, his illness progressed rapidly. When he reached his thirties, Sylvain Bédard spent several weeks in intensive care. Doctors come to his bedside every four hours to try to stabilize his condition.
PHOTO MICHEL WHITE, PROVIDED BY SYLVAIN BÉDARD
Sylvain Bédard, during his ascent of Mont Blanc, in June 2003
At the age of 33, he received a new heart. The operation is a success. So much so that barely three years later, he climbed Mont Blanc, France, with his doctor, and became the first Canadian heart recipient to reach this summit.
I was very proud of myself, because I had defied all predictions [de réadaptation]. It had never been seen.
Sylvain Bedard
Over the years, he will have five sons, while being a project manager and tour director.
Sylvain Bédard then takes a cocktail of drugs daily. “Twenty-five a day,” he says. These drugs cause him muscle pain, digestive problems, tremors, high blood pressure and cholesterol. But they are essential to ensure the survival of his new heart.
Despite the medication, however, his body began in 2014 to reject the heart he received. He needs another transplant. “It was a shock and a reality check. I was going back,” he says. He waited four and a half years before receiving the heart from a new donor in December 2018.
“My problems have only just begun”
In 2020, Sylvain Bédard was diagnosed with skin cancer. “I remember saying to a friend, ‘I know my problems are just beginning,'” he says. He underwent a dozen operations and a graft on his forehead to remove a cancerous cyst.
Then, last October, he was diagnosed with lung cancer. He was operated on in February; a cancerous tumor “as big as a tennis ball” was then removed. May 18, after a scan, the diagnosis falls: he is suffering from metastatic lung cancer.
“I am now like Amy,” he says. Amy is Amy Silverstein, author and double heart transplant recipient. She wrote an open letter in the New York Times last April titled “My transplanted heart and I are going to die soon”. She also suffered from metastatic lung cancer, which she attributed to decades of post-transplant medication.
“My first donor’s heart died due to insufficient protection of transplant drugs against rejection of the donor heart; my mate will most likely die from their blocked immune effects that give vent to cancer,” she wrote.
Amy Silverstein died three weeks after her letter was published on May 5. She was 59 years old. His story deeply touched Sylvain. “It’s an ignored side and that’s what made his article touching. Finally, someone dared to say how hard it can be. »
It is that “transplant recipients do not have the right not to be in a good mood or not to be grateful”, believes Mr. Bédard.
Seems like because we got this, life always has to be good, when a lot of us have medical issues.
Sylvain Bedard
His health problems will never take away the recognition he has for his two donors. “Because I wouldn’t be here today without them,” he said. Even knowing the risks, he wouldn’t hesitate to redo his career, just to have the chance to see his children grow up.
His plan for the future? “Enjoying life to the full, to the end. »
A risky medical miracle
In the world of organ transplantation, glowing success stories are often touted. Behind these stories, however, hides a risky reality for transplant recipients, which we often try to hide.
“Patients are publicly expected to tell us about the glorious side of transplantation, but often they don’t have the space to express their regrets, their losses and the difficulties they may meet, “says the Dre Marie-Chantal Fortin, nephrologist in the kidney transplant team at the Center hospitalier de l’Université de Montréal.
Organ transplantation is often presented as a medical miracle, but in fact, it involves significant risks for patients, such as cancers and infections.
PHOTO ROBERT SKINNER, LA PRESSE ARCHIVES
Dr. Marie-Chantal Fortin, nephrologist with the kidney transplant team at the Center hospitalier de l’Université de Montréal
Many patients do not want to harm organ donation. We want to encourage people to sign their organ donation card, we don’t want to highlight the darker side of organ transplantation.
The Dre Marie-Chantal Fortin, nephrologist in the kidney transplant team at the Center hospitalier de l’Université de Montréal
Essential medicines… but which make people vulnerable
Transplantation saves lives and improves the quality of life of patients. “It allows them to live longer and live better, but it’s still a chronic disease,” she adds.
Without anti-rejection drugs, the body may recognize the transplanted organ as an intruder and destroy it.
If, overnight, they stop their medication, they will lose their organ.
The Dre Marie-Chantal Fortin, nephrologist in the kidney transplant team at the Center hospitalier de l’Université de Montréal
These drugs, which reduce the effectiveness of the immune system, however, make patients more vulnerable to complications. Transplant patients, for example, have a higher risk of developing certain types of cancer, including skin cancers. “Someone who is transplanted young and who has more years of immunosuppression behind the tie, he has a greater risk of getting cancer,” she explains.
Medications also increase the risk of serious infections, such as COVID-19. “Our anti-rejection drugs can also create diabetes, increase high blood pressure, therefore put you at greater risk for cardiovascular disease,” says Dr.re Fortin.
In search of balance
Finding the right balance with these drugs is a real challenge. If you take too little, you risk rejection of the transplant, but an excessive dose can cause serious side effects, such as cancer.
For now, doctors prescribe similar doses to all patients, regardless of their individual differences. “We only adjust it once people have complications, but we’re not able to predict if that person is at risk of having more rejections,” says Dr.re Fortin.
Researchers are working hard to make immunosuppression more personalized. The idea is to predict whether someone is more likely to reject the transplant and adjust doses accordingly.
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