Testimonial: When reality catches up with us

I will be 30 next year. Five years ago, before my lung transplant, I never thought I would reach this age. Even as a teenager, I did not really believe in becoming an adult. I was not disillusioned, but realistic about my health and the statistics of the time on the life expectancy of people with cystic fibrosis.

When I was put on the lung transplant waiting list in 2007, I knew I was at a point of no return. Without a transplant, I had about two years left to live. The possibility of not surviving the operation was very real. Exhausted, I must admit that a part of me was content to survive for nearly 21 months.

On September 3, 2009, at the age of 23, I received my new lungs. As I went to the operating room, I kept in mind that life could end there, but I was still hopeful. Fortunately, the operation went well. After three weeks in the hospital, the recovery went smoothly. I then had high expectations for the “post-transplant”. Everything was going to be amazing. I had been given a second chance and nothing could stop me anymore.

I was very healthy and wanted to make up for lost time. Studies, outings, trips, meetings, love: I wanted to experience everything, experience everything, succeed in everything. I re-enrolled at university to complete my bachelor's degree in social work and started an internship in September 2010 at Notre-Dame Hospital in Montreal.

Quickly, I realized that something was wrong. I was tired, disorganized, anxious. I knew the hospital as a patient, not as a worker. A month and a half later, my internship was interrupted due to exhaustion. Wounded in my pride, but relieved, I realized that I had gone too fast.

After a period of rest and preparation for a new internship in autumn 2011, life caught up with me abruptly. In August 2011, I became seriously ill. After several days of rapid deterioration, I was plunged into a coma. The diagnosis was made: encephalitis. The most likely cause was found to be intoxication with an anti-rejection medication.

When I woke up, I couldn't talk, walk, or eat by myself. I had lost all the muscle tone I had acquired after the transplant. The rehabilitation was long and challenging. Although the doctors wanted to be reassuring, my morale was at an all-time low. I had the impression that the transplant, which was supposed to put an end to the trials, had plunged me into a new ordeal.

Two months later, I was released from the hospital and went back to live with my parents. Thanks to their support, everything gradually came back: speech, walking, energy. However, I had to accept living with certain limitations, despite my idea of the transplant.

Looking back, these challenges sometimes discourage me, but they also allowed me to move forward. I graduated in social work, I live in an apartment with my lover and I am building a quieter, more serene life, more faithful to who I am. I understood that I had set the bar too high after the transplant.

Today, I am trying to live one day at a time. I can't always do it, but I remember that thanks to the transplant, I still have time ahead of me. So why do you want to rush things?

Testimonial by Viviane Crispin
Montreal

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