Lou-Anne and Stéphane are very close. That much was obvious the second I met them. The warm and loving way they look at each other tells it all. Lou-Anne is somewhat reserved, but she doesn’t need to say a word: all I have to do is look into her eyes to get an idea of everything she has been through.
Lou-Anne has cystinosis, a degenerative disease that attacks all the organs in her body. She wasn’t diagnosed until she was three and a half years old. By then, she was in danger of losing her kidneys and her eyes. With her renal function down to 32%, she was transferred from the Centre hospitalier de l’Université Laval in Quebec City to Sainte-Justine, where she became a patient of the renal transplant clinic and Dr. Aicha Mérouani, a nephrologist specializing in her condition. The goal: to avoid dialysis and get Lou-Anne’s body ready for a transplant.
Sainte-Justine’s renal transplant clinic opened in 1974. It was the first pediatric facility of its kind in Quebec. The clinic’s first family transplant dates back to 1976, and the donor kidney is still going strong to this day. In the years since, more than 300 kidney transplants have been performed, Lou-Anne being one of the most recent recipients.
When we were transferred to Sainte-Justine, we expected that Lou-Anne would have a transplant right away. We were told that things were heading in that direction, but that we weren’t quite there yet. We’d have to wait until her kidney function was down to below 10%. It ended up taking seven years to get there!
The Gaudet family’s home is in the Magdalen Islands. Which meant they had to fly into Montreal every three months for seven whole years, and every month as the transplant date grew nearer. It strikes me how hard that must be. Hundreds of appointments, drops in her eyes every two hours, a strict drug regimen, endless bouts of motion sickness, financial pressures, stress… her entire family have seen their lives turned upside down.
While I’m talking to her parents, Lou-Anne doesn’t say a word. But there’s a quiet strength about her that’s palpable. A resilience. I have no trouble believing them when they describe how their daughter made it through these challenging times, learning day by day how to live with her illness.
Then, one day, after all that waiting, it was time for the transplant. Lou-Anne and her father exchange glances as we talk about it. They went through the entire experience together, sharing their tension, their anxiety and their fear for all those years. They tell me they have a great support network in place and were ready, physically and mentally, for what the team at Sainte-Justine had in store for them.
I would’ve gladly given her my heart if it would’ve helped. For those seven years we waited for the transplant, I kept telling her I was going to donate my kidney to her. My left kidney, I’d say. I thought it’d be stronger, since I’m left-handed. And all the tests came back saying the same thing!
A transplant in Montreal meant relocating to the city for three months. Her parents put their jobs back home on hold and found a small apartment. They packed up everything they could think of, from their winter tires to as much seafood as they could manage. The transplant happened on September 25, 2018, under the supervision of Drs. Phan, Clermont and Lapeyraque.
The procedure went extremely well. Lou-Anne came through beautifully, albeit not without sizeable doses of antirejection drugs. Today, her kidney function is a whopping 104%! The happy ending to this story is in large part attributable to our donors, whose contributions helped equip Sainte-Justine with state-of-the-art operating facilities.
The way Lou-Anne puts it, she now has three kidneys: her old kidneys “from before” and the new kidney she got from her dad, in the front of her abdominal cavity. She instinctively pats it as she tells me about it.
Lou-Anne is incredibly careful. She’ll automatically protect her kidney if there are other people around. When she had her biopsy, she told the doctors, “Be careful, that’s my dad’s kidney!” She’s really good at looking after it.
The connection I have with my daughter now is very strong and very special. We can feel her kidney, my kidney, inside her. We sometimes even compare our scars. Hers looks a lot better than mine!
The Sainte-Justine Family
These days, Lou-Anne and her parents still have to fly to Montreal on a regular basis for post-op care and to manage her disease. Lou-Anne smiles at me when we talk about her visits to Sainte-Justine. Over the years, she has become very close with the doctors, nurses and other staff members she sees frequently.