Kidney transplant patient helps comrades
Woman has been awaiting a donor for nearly 20 years.
Ever y morning, Sus a n Caplan wakes in her Boca Raton home, hoping the wait is over. That this will be the day the matching kidney is found, and her 19-year quest will be at an end.
She waits. And as she has done since her 1999 diagnosis of kidney disease, she passes the time by helping others who suffer from the same debilitating ailment.
“Being diagnosed with polycystic kidney disease (PKD) was devastating,” said Caplan, 64. “I was determined to learn as much as possible about the disease, and to do all that I could to help raise awareness and help others who were not as healthy as I was at the time — about PKD and organ donation.”
One year after being diagnosed, Caplan began her 12-year volunteer tenure as volunteer coordinator of the PKD Foundation’s New York City chapter until she moved to Boca Raton in 2012. That year, she immediately became the volunteer coordinator of the foundation’s South Florida chapter, a position she still fills with passion. She also organized several walks to raise money for research.
“People email or call me all the time with questions about doctors, medications, research and I try my best to supply them with as much information as possible,” Caplan said. “I know exactly how they feel and what they need, and the community of support that we provide to each other is invaluable. No one should feel alone with polycystic kidney disease.”
Caplan was first diagnosed by accident through a routine colonoscopy. She had pain in her core area, and her gastroenterologist gave her a prescription for an MRI and told her to stop doing situps at the gym. Her colonoscopy was fine, but the MRI showed mild symptoms of PKD. According to the PKD Foundation website, PKD is a chronic, genetic disease causing uncontrolled growth of cysts in the kidney, often leading to kidney failure.
S h e was sh o c ke d . S h e was teaching kindergarten in New York and felt fine. At that time, it was impos- sible for doctors to predict if and when Susan’s disease would progress.
“I decided to take control and help others who were not as fortunate and healthy as me,” she said. “I’m a teacher and knew I could help regular people like me become aware of how to live as best as they could with PKD.”
C a p l a n was h o p i n g t o re t ur n t o he r s ubs t i t ut e teacher position at a local private school this school year with a new kidney. Unfortunately, she remains on the Hepatitis C Kidney Transplant List at Cleveland Clinic in Weston and the UNOS List at PennMed in Philadelphia.
S he’s hopi ng t o f i nd a donor match as soon as possible with her blood type 0+; 0- is acceptable, too. Type 0 blood is the only option acceptable and is in high demand. This adds to the difficulty of finding a donor match. To help spread the word, she has a Facebook page and drives around with a sign on her car asking for a kidney donor to draw attention to her urgent need.
For Caplan and her husband, Steven, finding a cure for PKD is essential. One of their two sons has PKD and is so far living successfully with the disease. There are some distant worries for the future of their three grandchildren. Their hope is that medical technology and advanced research will guide the next generation to a level of successful health.
“Good things come to those who wait,” Steven Caplan often tells his wife. He accompanies her to every appointment and advocates for her. He took her to Festival Flea Market to design a “Need Kidney” T-shirt. They sit on the beach together and he sets up a “Need Kidney” sign so it can get maximum views.
“My greatest wish is that a better lifestyle and a cure is on the horizon for my son and for all others who suffer from PKD,” Susan Caplan said. “Every year, the PKD Foundation coordinates fund-raising walks around the country to help raise money to support education, advocacy, awareness, research, clinical and scientific grants and more.”
This year’s South Florida Walk for PKD will take place on Nov. 4 in Hollywood. “We hope to inspire new friends to come out and join us to help put an end to PKD.”
Susan Caplan received a call many years ago in New York from a woman whose mom had just passed away from the disease. The woman said that she now feared she would also die, and they met for a reassuring chat and a hug. She guided her to a transplant hospital, and her husband donated his kidney on her behalf. She receives a present every year on her birthday from the family.
But now it’s time to focus on her own health. Susan Caplan is determined to maintain a proactive and healthy lifestyle.
“I want to make sure I have the best opportunities to live through this disease without many complications,” she said. “I’m focused on seeing my three grandchildren go through their wonderful milestones in life.”
Susan and Steven Caplan. Susan lives with polycystic kidney disease (PKD) and is searching for an organ donor with her blood type, 0+; 0- is acceptable, too.