Sara Platz’s story begins before she was born. She’ll tell you so herself. At 27 years old, she has her story down to a science, literally. The story has been ingrained from repeating it to doctors.
Platz, a Brookline resident and graduate of Providence College, was diagnosed with kidney failure at 22 years old. She started at-home dialysis and received a kidney transplant at age 23, but it failed after a year. She is now searching for a living kidney donor.
An avid dancer who has always dreamt of becoming a doctor, Platz now lives a life split between two states. She has a care team at Yale New Haven Hospital and lives part-time at home in Fairfield, Conn. She still rents her Brookline apartment within walking distance of Coolidge Corner as her “escape,” she said.
Platz launched a social media campaign called “Saving Sara” on Facebook and TikTok to search for a living kidney donor. Her recent posts in community Facebook groups have gained more interest than ever before, she said.
“I’m hopeful that someone will come along that is the perfect match for me,” Platz said.
Sara’s story
Platz begins her story with the fact that she stopped growing in utero and was born two months premature. At age 3, she was diagnosed with hypertension after her pediatrician could not find her blood pressure at a pre-op appointment for a minor surgery. Her mother, Joyce Platz, had rushed her to the emergency room and learned that she had such high blood pressure that she was at risk for a stroke.
“My mom has always said, ‘It was a blessing from God, because I would not have known that your blood pressure was that high,’” Platz said.
From age 3 to 22, Platz took medication to manage her hypertension.
Then, during her senior year of college, her ankles started swelling and her blood pressure worsened, Platz said. Eventually, she graduated and returned home to Fairfield. Her doctor adjusted her medications, but she said she had a gut feeling something was wrong.
She asked for additional blood tests, which revealed she had damaged kidney function. She dropped to the floor and cried after receiving the call, she said. Despite an ultrasound and additional tests, the doctors could not find the cause.
Determined to continue living her life, Platz started her Master’s in Public Health program at Boston University. When her parents asked if she still wanted to move to Brookline, she said, “I’m going either way.”
A few weeks later, Platz joined a Zoom call with her doctor to hear the results of a biopsy: She was in kidney failure resulting from a serious disease called thrombotic microangiopathy, or TMA, and the only treatment is a kidney transplant.
Platz said she burst out laughing, trying to process the news.
TMA is a pattern of damage in the small blood vessels of the body’s vital organs, most commonly occurring in the kidney and brain, that can be triggered by several different illnesses or genetic disorders according to the UNC Kidney Center . Symptoms of TMA include fatigue, dizziness, and swollen legs and high blood pressure resulting from kidney damage.
Platz’s doctors did not know the underlying cause of her TMA. Regardless, kidney failure is fatal without dialysis treatment or a transplant.
Despite the diagnosis, she finished her first semester of grad school and got on the Yale New Haven Hospital kidney transplant list during her holiday break. She was told that she would likely wait five to seven years to receive a kidney from a deceased donor since she has type O blood, Platz said. People with type O blood can only receive from type O donors, so they often wait longer on transplant lists.
She said her family and friends got tested to see if they would be a match for living donation, but all were turned away for various reasons.
Her symptoms worsened to the point that she could not even walk to the T anymore, so she started at-home dialysis and learned how to do it herself every night. Platz uses a peritoneal dialysis machine, which cycles fluid in and out over 10 hours while she sleeps to remove waste and excess fluid from her blood.
June 18, 2022
After one late night spent creating song playlists with her roommate-turned-friend, Natalia Swack, Platz woke up to her phone ringing. It was the Yale New Haven Transplantation Center. They had a kidney for her from a deceased donor.
“I had the kidney that night. I’ll never forget it,” Platz said. “It was June 18th, 2022.”
Despite initial complications and a second emergency surgery, Platz left the hospital with the donor kidney. She remembers saying a thank-you to her deceased donor for giving her a second chance as she was wheeled into the operating room, she said.
Platz was able to come off dialysis, start classes again and return to her favorite activities, including dancing. But slowly over time, her bloodwork showed worsening kidney function. Despite a year of adjusting medications and Platz doing everything she could to keep her body healthy, she ended up in kidney failure again.
Her donor kidney had gotten TMA, the same disease that had caused her own kidneys to fail in the first place. Infusions of a medication called Soliris can help repair and prevent TMA damage, but her doctors did not expect that the donor kidney would get TMA. By the time they started the infusions, it was too late.
When Platz receives a second transplant, the doctors will have her start the infusions immediately to prevent TMA, she said.
While prior genetic tests revealed she had a rare genetic disorder that causes hypertension and prematurity, Platz had no known genetic markers associated with TMA. Since her donor kidney got TMA, her doctors now think she likely has an unknown genetic mutation or predisposition for TMA, she said.
Platz has been on dialysis and the transplant list for the past three years. She said her doctors believe a living donor will give her the best chance.
Organ donation myths
Platz uses social media not only to search for a kidney donor but also to educate others on living organ donation. She said there are many misconceptions out there.
One common misconception, which Yale New Haven Hospital addresses on its living organ donation page , is that you need to be an exact match to donate a kidney. The hospital’s kidney exchange program creates matches between incompatible pairs, essentially swapping donors to facilitate more living transplants.
Another myth is that there is one large transplant waiting list where each person is assigned a number. Instead, there are multiple lists affiliated with transplant centers, so which list you are on often depends on where you live, according to the National Kidney Foundation .
People can be listed at more than one transplant center, but each hospital has its own criteria for multiple listing, according to the United Network for Organ Sharing . Joyce said Platz is listed at Yale New Haven and the Miami Transplant Institute, and she travels to Miami for required annual evaluations.
Joyce said she wants people to know that organ donation is easier than they might think. The UNOS page for living donation facts and resources notes that the transplant recipient’s insurance covers the donor’s medical expenses, and the National Living Donor Assistance Center may be able to provide financial support for travel, lodging, meals, and other non-medical expenses.
Yale New Haven’s Center for Living Organ Donation states on its webpage that it is “the first in the U.S. to provide donors with long-term medical and social monitoring related to their kidney or liver donation at no cost.” The center also notes that previous donors have reported being 100% recovered three weeks after surgery.
“For, you know, 99%, you wouldn’t even know the difference in your life, but you’ll save somebody’s life,” Joyce said.
Hope for the future
Platz remains on dialysis, hooking up to the machine every night. She experiences fatigue and is not as active as she used to be, she said. She works remotely as a research area specialist on an epidemiology project.
Platz said her mental health ebbs and flows, and she occasionally has a “good cry.” She said she compares her timeline to people she knows on social media, who are starting to get engaged, married or have kids.
When she is having a bad day, she calls her support team of family and friends. Her self-care includes coloring, painting, reading or walking to a coffee shop.
Platz said her long-term goal is to go to school to become a physician assistant. She said she enjoys helping people.
“She is a determined person who won’t really let anything get in her way,” Swack said. “If she puts her mind to something, she will complete it.”