Testimonial: a complicated life

Aging with cystic fibrosis brings its own set of difficulties and challenges. Our bodies age more quickly and expose us to more illnesses and incidents of all kinds.

I was born in Saguenay, eighth in a family of 10 children. When I was a child, I was told that I had asthmatic bronchitis. At three months old, I had my first pneumonia. As a child, I was rickety and I often had asthma attacks. As I had no medication, my solution was to go to bed and the next day I was better.

During adolescence, things improved. I grew and put on weight; everything was better for me. However, I had a lot of allergies: animals, dust, and weeds. I did a bachelor's degree in administration specializing in marketing. I then started a career in shopping centers for a subsidiary of the Caisse de Depot (Ivanhoé Cambridge). I lived in Quebec City and stayed there for 32 years.

At 30, I married an amazing woman, France. She had no idea that my health condition would be fragile and complicated, but she accompanied me faithfully with each new problem and I could always count on her support. When it came time to have kids, it didn't work out. I had surgery to see what was wrong and was told that my vas deferens were blocked. The doctor met with me to tell me that it happened in families where there was cystic fibrosis. So France and I decided to go for artificial insemination to have our children. It worked, we had two beautiful boys who are now 27 and 29 years old, Benjamin and Jérémie. They are two magnificent humans that we are very proud of.

After the children arrived, my health deteriorated due to fatigue and lack of sleep. In addition, my work led me to travel everywhere in Quebec. I started getting pneumonia again and again, two or three times a year, but over time it was between five and eight per year. So the doctors decided to investigate and I was hospitalized for a complete checkup. The diagnosis was issued: cystic fibrosis.

So, at the age of 38, I learned that I had this disease. From that moment on, things kept getting worse. The last few years before the transplant, I was doing one pneumonia per month with a succession of hospital stays and with intravenous antibiotics every two weeks. It was very difficult with my job. I had no energy left. Each time, the doctor returned me to work.

At the age of 46, I caught a bacteria that they had difficulty diagnosing, the Stenotrophomonas maltophilia. This bacterium causes infections that are complex to treat because it is multi-resistant to antibiotics. I was hospitalized, on oxygen. I went home with oxygen at home. I was put on long-term sick leave and since my income had declined, we had to resign ourselves to selling our house and buying a smaller one.

During a medical meeting, Dr. Josée Villeneuve offered me a lung transplant, because my lung capacity had returned to 30%. I accepted right away. My kids were 11 and 13 and I wanted to see them grow up. I have been at home waiting for almost two years with oxygen therapy 24 hours a day.

On May 28, 2008, I received the long-awaited call from the surgeon, Dr. Pasquale Ferraro, who announced that I had the perfect lungs for me. Half an hour later, my spouse and I were in the ambulance heading for Notre-Dame Hospital. Upon arrival, Dr. Ferraro was at the door with my sister Pauline, from Longueuil, who is a retired nurse. The surgery went well and despite some complications, I was able to leave the hospital after five weeks.

What a great gift I received! The gift of a second life where I was able to see my children grow up, finish their studies and get to know their spouses. This true miracle was possible thanks to a donor who saved several lives and I thank him for that every day. I also thank his family for accepting this gift.

I have been transplanted for almost 15 years. I was told that I would change one evil for another and they were right. Over the years, I have had various complications such as lung infections, a collapse of the left lung (atelectasis), pancreatitis, vascular problems in my legs that forced me to undergo bypass surgery and even amputation of my right leg, eye operations, and kidney failure, which led me, a year and a half ago, to have to receive dialysis treatments three times a week. in the hospital. I now live separated from my spouse, in Saguenay, near my family. My wife was no longer able to accompany me in my illness, too much stress and anxiety for her. However, we are on good terms and we see each other as often as possible with the boys.

Life has been good for me anyway and I don't regret anything. I wish it would last long enough to see my grandchildren on the horizon.

Thanks!

Text written by Carol Côté — October 2022

‍