You too, talk about organ donation as a family, democratize it, trivialize it. Confront your fear of giving into my fear of dying. Make a choice, it will be fair. And maybe one day you could be a catcher …
It took a few seconds for me to take my first breath and a few hours to accept it. It was enough for him to say yes for our paths to cross. We had a date that neither he nor I had decided on. In his violent death, I came back to life slowly. He could not expect anything in return and the beauty of his gesture is there.
I was born with cystic fibrosis, diagnosed at 2 and a half years old. The shock for my parents. A reality for the little girl that I was. It was not known, this pathology, in 1980, what medicine could get me out of this step at the time? Penicillin. The only one likely to make me leave this Necker hospital which administered barbaric but life-saving care. The sick little girl that I was couldn't understand why so much brutality. We didn't explain things back then. The steel hands of the physiotherapists fell on me, like holding a balloon under the water in the bathtub… The sharp points of the needles went through my thin baby skin, to collect a drop of blood on each finger and on my ears .
I also remember strolling with a stretcher bearer in the basements of this giant of the APHP, to find myself under the keen eye of the radiologists… My parents, powerless, did not attend treatment, the doors were closed on them . They weren't allowed to sleep next to me either. The moment of separation rhymed with supplication. I was screaming for holding them again, that little breath I was able to give was wearing me out. Then I finally fell asleep under the benevolent gaze of the Montparnasse tower … And it would start again every day, until I left the service.
My childhood was punctuated by these stays at Necker Hospital, the disease which progressed and my father who left, struck down by a road accident when I was 7 years old. The same deadline I was given at that time. My character has asserted itself. What else to do? I became resilient and independent in the face of treatment and the absence of my father, who gave me the "daddy's spoon" filled with drugs crushed into strawberry jam. I have become independent in the face of the doctors, my appointment scheduling, the decisions to be made. My life as a teenager and then as a young woman marched between schooling, secondary bronchial infections, hospital stays and first emotions. I married Guillaume in 2008, for limitless happiness.
But in 2009, my lungs weakened by the disease gave way during a respiratory physiotherapy session. A pneumothorax, complete and compressive. It was serious, I was only breathing with my left lung. I was operated on urgently and barely saved. A turning point in the disease. My reattached right lung was no longer mobile enough, it became more and more superinfected, there were more and more hospital stays, the antibiotics less and less effective. I was 31, I was up against the wall. There was nothing more to do … So we talked about a transplant. It was about time, this is the last therapeutic resort. I waited 7 days before being called on Friday July 13, 2012 at 9:38 p.m. In extremis. My daily life was nothing more than inhuman suffering. I was dying.
In the dead of night and under the crackle of fireworks, I fought the hardest fight to survive.
A convalescence later, I was breathing deeply.
Organ donation, the best gift
Somewhere, a person died a sudden, violent, unpredictable death. She was brain dead and she was a donor, she had expressed it during her lifetime. My donor had surgery, his organs were removed, they were perfect. Me, my lungs were good to throw on the researcher's bench. Only a canary could make use of my rib cage at that time in my life. She was hanging on by a thread.
Somewhere my donor donated because he no longer needed his healthy and perfect organs after he died. He was operated on as a living person would have been operated on, the integrity of the body was respected, the deceased was watched, night and day. The body was returned to the family with no scars visible. The mourning could begin. At the same time I was on the operating table, ready to die or ready to live out of the OR. The pneumatic doors closed on me, and the surgeons opened secret passages between my ribs, replacing my breathless lungs with high quality air filters. A fabulous change of parts.
In the dead of night and under the crackle of fireworks, I fought the hardest fight to survive.
A convalescence later, I was breathing deeply.
In 2019, lung cancer stood in my way … However, I had promised my donor to give him the most beautiful case for his wonderful gift. I finally kept my word: an operation later, we are no longer talking about this cloud that I swallowed askew. Today, I am a teacher, I am 40 years old, I live in Brittany and I am doing well! My quality of life is incredibly good. I exceeded all the estimated life expectancies … I have an impeccable lifestyle. I cannot thank my donor and his family enough for their ultimate generosity and immense sensitivity. You too, talk about organ donation as a family, democratize it, trivialize it. Confront your fear of giving into my fear of dying. Maybe "My second wind" will help you position yourself. Make a choice, it will be fair. And maybe one day you could be a catcher …
My second wind, at City Edition – Julie Martinez with Florence Bouté.
Watch the campaign film "A bond that unites us all", embodied by members of the transplant donation chain, but also by families affected by the subject.