For Kayla St. Pierre, every day is a gift, both literally and metaphorically.
Her road has not been an easy one, yet in a conversation with her, it is not readily apparent that her health is coming to a crossroads.
She needs a kidney donor for a second transplant, but now as an adult. She had her first transplant at the age of 13 after she nearly died from bacterial meningitis, a rare infection that irrevocably damaged her kidneys.
Since March 2019, St. Pierre, now 35, has been undergoing dialysis three times a week. For those who are unfamiliar with the treatment, which helps the body remove extra fluid and waste products, it is exhausting. It becomes a full-time health focus to gather the strength to return each time. It also carries potential life-threatening medical complications like blood clots.
“It’s like doing a marathon for three hours,” St. Pierre says. “But I love the staff. They are like a second family.”
St. Pierre’s young life took a near-deadly turn when she was 10 years old — a pupil eager to learn with perfect attendance in Lawrence. But she woke up one day that winter feeling terribly sick. She was sent home from school because of flu-like symptoms.
She shared the experience in a 2013 blog for Her Campus, a media platform catering to female college students.
“That night, I woke up in a panic. Purple splotches covered my arms and legs. Because my legs felt like jelly, I had to crawl up the stairs to wake my parents. Even talking was difficult, but when I told them, ‘Mom, Dad — something is wrong. I want to go to the hospital,’ I could see their confusion turn to alarm as they hopped out of bed to take me to the emergency room,” she writes.
“I remember not being able to lift my legs to put my shoes on and bursting into tears as my mom did it for me,” she continues. “As we drove away from my house, I had no idea that I would never return to my home.”
Her parents were told that their daughter had a 10% chance of surviving the night.
Starting over
Bacterial meningitis spreads quickly, and in the end, St. Pierre had her legs amputated below the knee, lost most of her fingers and suffered several medical complications. She was put in a medically induced coma.
“During my 10-month hospital stay, I had to relearn the most common things — how to eat, how to write, how to walk. I had to restart my life,” she writes in the blog.
Four months into her stay, “the unthinkable happened,” she writes. Her mother died.
“Nothing in my life had prepared me for this. I no longer had a home,” she writes. “My father was devastated after the loss of my mom and was unable to care for all of my medical needs. My older sister was 20 and was taking care of my 12-year-old brother. She was also working nonstop to find a suitable home for me.”
Although life dealt St. Pierre a devastating blow, it also brought a ray of light into her life.
In 2000, Heather LoRe, a nurse practitioner from North Reading who was part of her care team, and her husband, Tony LoRe, adopted St. Pierre. and her adoptive father turned out to be a kidney donor match that resulted in her first kidney transplant — a match that St. Pierre calls a miracle.
“When I think of selfless acts, this is at the top of my list,” she says. “I was given the chance to live again by someone who was a stranger to me just a few years before.”
After moving to North Reading, St. Pierre attended North Reading High School and then Northeastern University, where she earned a degree in psychology. She later earned a nursing degree from Simmons College. In 2016, she became a psychiatric nurse and was the first student to complete clinicals in a wheelchair.
But that success should not belie the emotional challenges she faced because of her health.
“My self-esteem suffered so much, and I was ashamed at how I looked, especially as a young woman with physical disabilities and differences,” St. Pierre says.
As an adult, to combat the emotional toll, she has learned to do affirmations every day, as well as yoga and meditation for self-compassion.
“That has really helped me, and at this point, I don’t have any fear anymore of being seen, and I thank God for that,” she says.
However, with her health taking a downturn, she has been unable to work.
“On days I have dialysis, I can’t function afterward. I can’t clean the house, or get up or do anything,” says St. Pierre, who now lives in Wilmington. “I’m young, but dialysis is grueling and you slowly get weaker over time. I’ve been at PT and I exercise at home and use an Apple watch to monitor my movement because I have to stay up to date — it’s like a full-time job.”
Staying positive
When asked how she overcomes the daily challenges, St. Pierre talks about the many blessings in her life.
“The first thing, always, is the love from my family, partner, friends and pets. That is what pushes me to get out of bed, and makes it easier to focus on the positive,” she says. “There are many wonderful things I have in my life that I’ve always dreamed of — I found the love of my life and I have a great support network, and I focus on loving them and loving myself like they love me.”
In the meantime, St. Pierre remains in a waiting game.
The website dedicated to her search for a donor, Kidney4Kayla, notes that every day 13 people die waiting for a kidney transplant.
There is an extensive campaign going on to find a kidney match, with social media posts and articles and magnets on people’s cars.
“There’s been a lot of people who are interested but were disqualified for various reasons. It’s about finding that perfect match,” she says. “And this isn’t all about me in that I want everyone to win; 17 people die a day waiting for an organ and 1 in 7 people have kidney disease in this country.
“It’s so important to know this information and be able to support your loved ones,” she adds. “And like having cancer or another disease, it increases your risk of depression and you need support.”
St. Pierre is registered at Massachusetts General Hospital for a living kidney donation. But she notes that the process is complex and layered.
She has also done advocacy work with the National Meningitis Association to educate others about meningococcal disease.
“I don’t want others to experience what I went through,” St. Pierre says. “I want families to know about bacterial meningitis and its symptoms and to understand that vaccination is recommended for preteens and teens.
“Life has certainly had its struggles, and meningitis continues to be a big part of my life, but I put effort into thinking about the positive,” she says.
“Yes, I lost a lot. No, it was not fair. But I also gained a new outlook on life, met amazing people, and have been given opportunities that I would not have had otherwise.”
She shares a final thought about her journey so far:
“If I have learned anything from this experience, it’s that life will not wait for you. You have to push through the hard times and make way for the good.”