Testimonial: I would have liked to be Superwoman

The urgency to live seems to be one of the most common characteristics of people with cystic fibrosis that I know. Like them, I fully felt it before my transplant and I imagined myself achieving everything when I finally had my lungs. I wanted nothing less than to be Superwoman, and I can still sigh about it.

This feeling is still present in my life, although daily life and routine have replaced it somewhat. I imagined myself running around and doing everything at the same time after my transplant, but I got the opposite effect. Luckily, I now allow myself to relax when I feel like it. I have given myself the right to believe in life and I no longer see death in the same way. Although the idea sometimes occurs to me, there are long periods of time when I don't think about it at all, and that change makes me feel good.

The dream

Three years ago, I received my lungs after a 17-month wait. I was lucky because the time to receive organs is getting longer and longer. This period of life suspended on the graft pager seems very far away to me today. During the last few months before the transplant, I couldn't afford to go out anymore, but as long as I was able, I escaped between hospital stays, going on a road trip with a friend and several bottles of oxygen.

Innocently, I believed that my new life would be like these moments of escape. I had forgotten that, in “normal” life, time is limited, divided between work and obligations. However, I wanted to live like everyone else: to work and to live as normal a life as possible.

The metamorphosis

After the transplant, that lust for life faded away. I quickly realized that I wasn't going to run a marathon as soon as I got out of the hospital. Even knowing that I had had major surgery, I underestimated the recovery. I was told about a “miracle,” and that idea took the form of a fairy tale in my mind.

My donor had to be a woman who knew how to relax, because I transformed myself. There was no rush anymore. I felt like I had my life ahead of me and I was enjoying the small joys of everyday life. The song of the birds enchanted me, and I rediscovered the pleasure of the present moment. Perhaps the real miracle lay in this second birth.

Nap and fatigue

Before the transplant, I did not understand how a person who had a transplant could be tired. After experiencing it myself, I understood that it was normal to need rest and that the energy was gradually coming back.

Today, although my FEV1 is close to 100%, I am often tired. This reality is sometimes hard to accept, but I've come to understand that endurance and lung capacity are two different things. The difference with others is mainly in my longer recovery time and in the fragility of my immune system.

However, nothing can compare to the exhaustion experienced before the transplant, when breathing already required immense effort.

Rebuilding your life

After the transplant, my life changed rapidly. The treatments progressed slowly, my strength returned, and I found myself with a lot of free time. I had to rethink my life, decide what I wanted to do with it, and accept that projects took time to come to fruition.

Little by little, I found my way back into the job market. After an initial difficult experience, a better adapted opportunity presented itself. Today, I work 15 hours a week. It's not enough to be completely independent, but it's an important step towards the life I want to lead.

This work allows me to realize myself, to feel valued and to enrich my social life. I learned to listen to my body, to respect my rhythm and to accept that everyone's reality is different.

A fairy tale come true

The transplant was not the fairy tale I imagined, and I will never be Superwoman. However, I am happy most of the time. The lungs don't make me happy, but the breath they give me gives me the freedom to choose what I want to do with my life.

My dreams change over time. The important thing for me is to be happy with my choices and proud of the life I am building. I only have one... even though, in a way, I was born twice.

Testimonial by Jacinthe Huard
Saint-Denis-sur-Richelieu

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