Before reaching the age of majority, Camille Stephan had already spent more than half of her life in hospital: born with a genetic disease that attacks her liver and kidney, the young woman underwent a double organ transplant at seven years old. interval: one came from an anonymous person, deceased, the other from his father, very much alive. Through her story, she wishes to pay tribute to her donors and “give strength” to other patients.
At the gynecology secretariat of Rangueil hospital (Toulouse University Hospital), a young blonde woman, with laughing eyes and a soft voice, tirelessly welcomes patients. Nothing, apparently, differentiates it from the others. Yet, Camille Stephan’s life is comparable to a long obstacle course. At the age of three and a half months, urgently hospitalized with a high fever, she suffered an internal hemorrhage in her mother’s arms. The verdict is in: she suffers from hepatorenal polycystic disease, the barbaric name for a rare and severe genetic disease which destroys her liver and kidneys.
Throughout her childhood, Camille “alternated between school and hospital” and spent as much time in one as in the other. Against the advice of doctors, who would like to see her stay at home “doing nothing”, for fear that a bad blow to the stomach would be fatal, her father wants his daughter to live to the fullest. “He took me cycling, horseback riding and even skiing. Thanks to him, I made the most of every moment,” she emphasizes.
Septic shock and first transplant
Until 2006, his condition remained relatively stable. Suddenly, the young girl develops, without reason, a first bout of sepsis. Followed by many others. “I was regularly hospitalized, on antibiotics and my condition was getting worse,” she says. Eight years later, on July 14, 2014, just aged 19, Camille suffered septic shock. Between life and death, she was plunged into an artificial coma for ten days.
“They told my parents: either she fights or it’s over. There’s nothing to do but wait.”
The young woman wins this battle. But his body is exhausted: the following months pass like a bad dream, on high doses of morphine. Each sepsis weakens him a little more. His family is preparing for the worst, Camille’s liver is completely destroyed and only the transplant of an entire organ can save her life, thus excluding any donation from a living person. On March 29, 2015, the long-awaited phone call rang. A liver is available. “She might die?” », worries his little brother. “Yes,” replies the surgeon, “but we will do everything to prevent that from happening!” »
Slowly accept the unacceptable
The operation lasts nine hours. When she woke up in pain, the young woman had an epileptic attack, because after eight months on morphine, the withdrawal was violent. However, a few weeks later, and despite “his impressive new scar”, his body is better. “Without the transplant, I would have died. It was a matter of weeks,” she notes pragmatically. But she still cannot accept the unacceptable: to live because someone else has left, to live with the liver of a dead man. “At first, I couldn’t even put the cream on the scar. I couldn’t stand looking at myself in the mirror,” she whispers.
Camille tries to find out who her donor was. The operating report provides some answers : “She was a young person, who died in a road accident,” she confides before continuing: “I don’t know if she was a man or a woman but I often think of her family. Even if today I have overcome this terrible feeling, the acceptance of a foreign organ in my body will have taken two or three years. »
“My mother gave me life. My father too”
In his young adult life, things are improving. Until 2022. His new liver fulfills its missions, but anti-rejection medications accelerate the deterioration of his kidney. “With each blood test, the results got worse and worse. We had to face the facts: it was a transplant or dialysis. “, she summarizes.
“My parents were both compatible. I was lucky ! » she dares to assert. His father will be the donor. At the end of an “endless” wait, after a battery of examinations and a summons before a jury “which confirms that the donor’s choice is free”, both are operated on March 23, 2022. “I can never thank my father enough. Thanks to him, not only do I live, but I live again! » declares the young woman forcefully.
In September 2022, Camille returns to active life and achieves her goal: working in a university hospital. “Children’s Hospital in Purpan has been my second home for a long time. And with everything I’ve been through, I have empathy to spare, I know how to reassure patients. Above all, I wanted to give back as best as possible everything that had been given to me,” she insists.
An (almost) normal daily life
“Apart from grapefruit, which has a contradictory effect with anti-rejection drugs, I can eat everything. I’m even allowed to have a drink from time to time! » she admits. His daily life? A car, a job, a boyfriend, projects… And tablets, which she will take for the rest of her life, morning and evening. “Except for medical monitoring and treatments, I lead the normal life of a 29-year-old girl,” adds Camille, amused. She brushes the subject aside: “I’ve been on treatment forever, so a few more medications, frankly…”
Camille moves forward. She set herself goals: obtain a permanent contract in Rangueil. Have a child. And continue to speak out and raise awareness about organ donation, via the France rein association. “You can register on the Internet or keep a note on yourself or on your phone stating that you wish to donate your organs. If a person doesn’t talk to their family about it, it’s their loved ones who will make the decision without knowing what their wishes would have been, it’s a shame,” she emphasizes, seriously. Before regaining his usual enthusiasm: “Because the important thing is to keep the strength, the joy, the desire to fight! There are always people who will reach out to you,” she concludes.
Marie-Dominique Lacour
