“On July 7, 2012, I’m 31 and I’m dying. My life hangs on one breath, I barely have 16% breathing capacity left, my lungs have reached the end of their way. I am in the terminal phase of cystic fibrosis. Living represents a superhuman effort: I hardly speak any more to save myself, I can no longer move on my own. Guillaume, my husband, carries me constantly.
I measure each effort, I make sure that each movement is essential to me so as not to trigger a fit of coughing which could kill me. Breathing is a constant struggle. I have to think about inhaling, then exhaling and, above all, remembering to start again, because my lungs are paralyzed from excess mucusgenerated by the disease. This July 7, I am registered on the list of priority patients for a double lung transplant.
It’s hard to tell myself that I have to wait for the death, accidental and violent, of a person now in full health. For me to live, this other must die. But I can’t wish death on anyone. One evening, I almost hoped not to wake up, so as not to know this expectation, where my fate is linked to the death of another.
Someone just died and is gonna save my life
It is 9:38 p.m. on July 13, 2012, when the telephone dedicated to the transplant rings. Right on time. It’s unexpected. “As long as I don’t die before I reach the hospital” ,I thought. Then I realize someone just died. And he’s gonna save my life. A family mourns a loved one and bids them farewell. Impossible, therefore, to rejoice in what is happening to me.
The intervention lasts 14 hours. Waking up in intensive care, with a tracheotomy, and after a week in a coma, is terribly painful. To be reborn is a struggle. But, four weeks later, I leave the hospital breathing deeply. They are cured, free from the disease, although it remains in my body, in particular on the digestive level.
I needed to own this gift
Every day I think of my donor. I don’t want to know his identity, but not having any element allowing me to imagine the one thanks to whom I breathe again, because of the anonymity between donor and recipient, prevents me from fully appropriating this gift. I need to know who to think of to do it with the respect he or she deserves. Despite my recurring pleas, the medical team cannot answer me. Until the day when, for the first time, I was asked to bring my file to the radiologist myself. The answers are bound to be there.
Time freezes. I remain planted in front of the elevator. I hesitate to open it. I end up isolating myself in the toilet: the donor’s hospitalization report is there, without his identity. The causes of his death are written, as well as his sex and age. In a few seconds, I calm down. I know where the swelling lungs in my chest are coming from. Therefore, they are mine. Definitively. I now know who to thank, who to think about, how to talk to her. I know who this other is. I found my way to acceptance.
My mother gave birth to me, my donor gave me birth
The two years that followed, I realized my dream: I became a school teacher, after resuming my studies. But, in 2019, an ordeal darkens my new life. Immunosuppressive and anti-rejection drugs increase the risk of cancer and a tumor is diagnosed in my left lung. That my health is again precarious was of an extreme violence to live. Now I am healed and fine.
I cannot thank my donor and his family enough. My mother gave birth to me. My donor gave me rebirth.
You gave me your breath and breathed life into me, but you ignore it. The beauty of your gesture is there. You passed on your heritage to me and I can only promise to offer it the best possible setting for the most precious gift: life. Thank you for having the generosity and selflessness to bring me back to life.”
To read : My Second WindJulie Martinez, with Florence Bouté (ed. City)
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