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How one woman's selfless kidney donation made her a hero, 7 times over.

They took out Stacey Donovan’s kidney and put it into something that looked like a beer cooler.

An organ transplant cooler in Germany. Photo by Sean Gallup/Getty Images.

The container appeared better suited for a picnic than an operating room. But in a short time, that cooler — and Donovan’s kidney — would be flying over 1,500 miles to San Diego to meet its new owner.


Her donation would also set off an amazing chain reaction that would change not just one life, but seven.

It all started in 2013 in Prairie Village, Kansas, where Donovan lives with her husband and three rescue dogs.

While reading a science magazine, Donovan came across an article about the immense need for kidney donations. Estimates indicate that 600,000 Americans suffer from kidney failure, a serious and potentially fatal condition. Dialysis is the solution for many, but it can be exhausting. The typical procedure takes four hours at a time, has to be done three times a week, and can cause cramps, headaches, and vomiting.

A close-up of an artificial kidney machine. Image from iStock.

A kidney transplant is usually the only way for patients to be free from dialysis, but kidneys are in short supply. The waiting list is almost 100,000 people long, according to the United Network for Organ Sharing. Many people end up waiting for years.

“It just sounded like such a difficult, hard-to-keep-your-hope-up kind of existence,” said Donovan.

Donovan decided to do something most people have probably never considered. She was going to donate a kidney.

A live kidney donation surgery in Birmingham, England. Photo by Christopher Furlong/Getty Images.

“It wasn’t a difficult choice. I’ve taken more time deliberating whether to grow out my bangs,” she’d later write for XOJane.

But her family, especially her husband, wasn’t so keen on the idea. The surgery itself is pretty safe, but all surgeries come with risks. Plus it’d mean Donovan, with only one kidney, would be taking on a new pre-existing condition.

“The one thing that was reassuring for him, and kind of helped me win the debate, was the Affordable Care Act,” said Donovan. The law's pre-existing condition clause would protect her from rate hikes or denial if she ever needed to buy insurance again in the future.

Family convinced, Donovan contacted the National Kidney Registry, an organization that plays matchmaker for organ donors. For the next four or five months, Donovan went through a battery of checkups, stress tests, and urine analyses to make sure she was healthy enough to donate. She also had to send vials of blood for organ compatibility tests. She said that after enough vials, it became easy to imagine the National Kidney Registry as the front for some very sophisticated vampires.

Eventually they found a match — a man in San Diego.

Donovan had never met the man who would get her kidney. She didn’t even know his name.

Donovan and her husband drove to Barnes-Jewish Hospital in St. Louis for the surgery. After she woke up, a nurse told her, “Welp, nobody can ever say you never did anything nice for anyone.”

Donovan the day after the surgery. Photo from Stacey Donovan, used with permission.

But Donovan’s kidney was only the start of this story.

Because of Donovan, the San Diego man’s wife decided to pay the good deed forward and donated her own kidney to another unrelated recipient. And that in turn set off another donation. And another. And another. In total, Donovan’s initial donation ended up getting seven different people new kidneys.

It was a lifesaving effort carefully planned by the National Kidney Registry.

When a person needs a kidney, friends and family often try to donate but many find out they’re not compatible. In the past, this would be the end of the story, but starting in the late-1980s, doctors and hospitals realized they could simply swap who gets which kidney. Sometimes, these were simple exchanges, but sometimes a single altruistic donor can set off a chain reaction — a donor like Donovan.

Today, Donovan's back to her old life, though now she's worried others might not be able to follow in her footsteps.

Donovan says lately she’s been worried about what will happen if the Affordable Care Act's pre-existing condition clause is changed or repealed. The safety ensured by that law played a big part in convincing her family that she should donate.

“My main concern with that is what it'll do with the number of donors,” said Donovan.

What'll ultimately happen to the health care law is still unclear. The latest attempt to repeal and replace tries to keep the pre-existing condition clause, but introduces a loophole that’d allow insurers to charge more if a patient has gaps in their coverage record. And it's not clear if this bill will pass Congress.

Troy Zimmerman, vice president of the National Kidney Foundation, said he thinks the doubt around the Affordable Care Act could certainly affect the number of living donors.

Donovan still hasn’t met the man who got her kidney, but she has been able to get a glimpse of what it meant to him and his family.

About a week after the surgery, Donovan ended up getting a special package in the mail.

“I got all these handwritten letters from his family members,” said Donovan. It turned out the man wasn't just somebody's husband — he was a father and grandfather. In the letters, grandkids explained how the man could now go to the beach with them again. He could see them graduate.

The man's wife wrote as well. In her letter, she described life before the donation. It read, "...He's in the back room all the time in pain." But thanks to Donovan's generosity, she said, that pain could fade away.

And after his transplant, it did.

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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