Testimonial: The journey of an obstacle

At the beginning of 2011, my health was becoming less and less stable. The condition of my lungs was deteriorating, which required a lot of energy. I was losing weight and the infections were more frequent than ever. In April, during a hospitalization, my doctor announced that I would now have to use oxygen and have a gastrostomy. Time passed but, despite all the treatments, my condition did not improve at all. It was then that, on the recommendation of my doctor, I took the steps to obtain a bipulmonary transplant.

It was at the end of that summer that I passed the famous pre-transplant tests. The answer was long in coming: I was so hopeful that the answer would be positive, because the biggest reason for accepting this chance for a second and new life was my daughter, who I wanted more than anything to see grow and develop. After a few weeks of waiting, I was very happy that I was accepted. Meanwhile, my condition continued to worsen. My lungs were functioning at less than 30% of their capacity, requiring further treatment. Every night, until my transplant, I was going to have to connect to a BiPAP machine to breathe better. The year 2012 passed with far too many endless hospitalizations. The infections were persistent and almost uncontrollable. I can't count the times when, in very critical conditions, my spouse had to be calm and cool to keep me awake while waiting for the paramedics. Thank God, this mostly happened at night, so my daughter did not suffer too much to see me like this. In October, the doctor announced that I should be transferred quickly to the Hôtel-Dieu in Montreal, where I would receive more adequate care, since doctors have better expertise in treating cystic fibrosis. My partner and I went through the full range of emotions and were torn because our daughter couldn't come with us. It was with a heavy heart that we then prepared for our departure. Overnight, we had to leave everything behind: our daughter was going to stay with the family in Lac-Saint-Jean and my spouse had to leave her work to accompany me to Montreal. Fortunately, at the Hôtel-Dieu, we met an extraordinary team and doctors! We have built strong and incredible relationships not only with them, but also with other cystic fibrosis patients. Today, my spouse and I consider all of these people to be our second family.

Waiting for my transplant became more difficult as my lung capacity quickly fell below 20%. I almost never left the hospital, my condition no longer allowed it. The year 2013 was not much better: with less than 20%, we no longer do much physical activity. Getting dressed, brushing my teeth, and eating became a real struggle. And what is most vital, breathing, was becoming a constant battle. All this time, my partner stayed by my side, 24 hours a day, to support me physically, but especially psychologically. Unfortunately, the hardest part was yet to come. New problems surfaced. Antibiotic resistance led to the testing of new treatments that caused me allergic reactions and liver problems: I almost died. There was even talk of giving me a double transplant: my lungs and my liver. The medical team then made the decision to quickly put me on the emergency list for a lung transplant, hoping to be able to avoid the need for a new liver. Two weeks later, on October 10, 2013, I received the long-awaited call: they had finally found a donor for me!

The operation was a success. To date, I have had no problems with my new lungs. Just two weeks after my transplant, I got my feet tangled up in my last chest tube, which caused me to fall and I was left with a hip fracture. I had to have my femoral head replaced. I then went to the Lina-Cyr Transplant House for my recovery, until I ended up in the emergency room because of excruciating abdominal pain. I stayed there for a few weeks, because it was believed that it was a reaction from my liver, which could not be operated on, otherwise the survival of my newly transplanted lungs would have been compromised. After multiple examinations, the doctors realized that the gallbladder was the source of these pains. It had to be taken away from me. The operation was not without problems, as I had a hemorrhage during it. I had to have surgery a second time in less than 24 hours.

With the arrival of 2014, I had a short break and was able to enjoy a bit of the new life that was in front of me, until my kidneys decided otherwise. Strings of stones had formed there, and I was operated twice to remove them. The bad news continued. In May, bacteria lodged in my liver and I was in shock after it infected my blood. I still had to be hospitalized for several weeks. A third of my liver was removed. The operation having gone well, I was then allowed to return home to Lac-Saint-Jean. I was then reunited with my daughter, who I missed so much. Less than 24 hours after my return, I was urgently transferred to Montreal by plane: I had a liver abscess.

To treat the numerous infections associated with cystic fibrosis, I have received a lot of antibiotics over the years, which is not without consequences. My kidneys have suffered a lot as a result. At the time, I was suffering from kidney failure. Bedridden for a good period of time and with all the shocks suffered by my body, my physical condition deteriorated and I had to undertake intensive physical rehabilitation to be able to regain my mobility. Despite everything that has happened to me, I think it's important to see the positive side of the story. I am not alone in all these trials. I have been sharing my life with a wonderful woman for over 11 years. Like me, she never gave up, present at all my difficult moments. She always encouraged me to fight harder every day. She has never run away from reality, against all odds, against the terrible disease that is cystic fibrosis with its share of unforeseen events. Instead of driving us apart, the disease has made us a stronger couple than ever. With unconditional love on his part, I did not give up. I can say that I have fulfilled my dream, and it is together, with my daughter, that I am living it.

On September 20, 2014, we united our destinies, under the eyes of our parents, our friends and even some media. This memorable day, which took place at the Maison des Grafés, was filled with emotions and love, in the company of the people we love. No matter what fight you're fighting, never give up and keep your head up. Within each of us, there is a warrior waiting to be awakened to fight alongside us!

Testimonial by Alain Larouche
Alma

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