Full Circle: Father-Daughter Hematology Duo Evaluates Historic Patient
Dr. John Byrnes introduced the woman he cured 50 years ago to his own daughter, now a doctor following in his footsteps, as the two continue to advance care for a rare blood disorder that was once nearly universally fatal.
When Frankie Lynn Bayer arrived by ambulance to Jackson Memorial Hospital a half-century ago with a rare, life-threatening blood disorder, she was scared, pregnant and extremely ill.
When Bayer walked out after a harrowing six months in the hospital, her hematologist, John Byrnes, M.D., had cured her from the grips of thrombotic thrombocytopenic purpura (TTP) by discovering plasma infusions as the treatment. Prior to this discovery, there were no effective treatments for TTP. Together, they turned the virtually incurable disease into a highly treatable one and have saved thousands who have since been diagnosed with the disorder.
After decades apart, Bayer returned for an updated exam with not only the doctor who saved her all those years ago, but with his daughter, Diana Byrnes, M.D. ’15, M.P.H., also a hematologist at Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine. Dr. Diana Byrnes sees many of her father’s former patients since he no longer works in the outpatient clinic. There wasn’t a dry eye in the room.
“It is an incredible experience to finally put a face to this person you read about in the case report,” said Dr. Diana Byrnes, an associate professor in the Division of Hematology at the Miller School. “To meet her in person was a really amazing experience. We stand on the shoulders of giants in terms of my dad’s huge legacy finding a cure to a disease which was nearly fatal before my dad stepped into the picture. Following in his footsteps, it’s really big shoes to fill. I’m proud and so grateful that I have him to guide me and mentor me and teach me everything.”
The elder Dr. Byrnes, a Miller School professor in the Division of Hematology, also beamed with pride. Though he said it wasn’t his involvement in this case that tipped the scales toward her entering hematology, he isn’t surprised she is following his path.
“She has a lot in common with me – her personality, her food choices – so I think we share a lot of interests,” he said. “It’s genetic, I guess!”
A Difficult Treatment Course
Dr. John Byrnes started as a hematology fellow in 1970 and wasn’t even supposed to be there the day Bayer arrived. He was originally scheduled to be in Japan for a conference and was the only hematologist on call. Bayer remembers waking up to beeping machines in the ICU and seeing her sister standing over her.
“Dr. Byrnes had told my family that what I had was fatal,” she said “From there, it was just him doing whatever he could to get my platelets up. They didn’t know how to treat TTP. I was a guinea pig.”
Bayer received more than 500 experimental transfusions before going into remission.
Her family lived hours away and wasn’t able to be at the hospital often. Some days, Bayer was angry, throwing things and speaking harshly to the doctors.
“He’d walk in and just smile,” she said. “He’d say, ‘I like that she’s fighting to live.’ Dr. Byrnes was there every single day. He was like my father. He never gave up.”
After discharge, Bayer trekked back 90 miles on Alligator Alley every two weeks for bloodwork. Sometimes, she’d get home to Clewiston only to be told to return. Six months later, the treatment was finished.
Identifying a Cure
TTP, which affects five to 10 people per million every year, causes blood clots to form in small blood vessels throughout the body that can limit or block the flow of blood to the brain, kidneys and heart.
“She had a survival instinct,” Dr. John Byrnes said of Bayer. “She was our partner in this medical advance we made, able to not only survive for herself, but what we learned was so meaningful to other people with this disorder.”
“He’d walk in and just smile. Dr. Byrnes was there every single day. He was like my father. He never gave up.”
—Patiient Frankie Lynn Bayer
The case resulted in some 20 research publications that Dr. John Byrnes wrote with colleagues.
“Miami was the epicenter of progress on TTP for 20 years,” Dr. John Byrnes said. “Thereafter, a number of very consequential observations were made in other patients and in the laboratory, so additions to the story were made by others.”
“I’m so glad that my suffering has benefited others,” Bayer said. “It is the most profound thing I’ve done in my life.”
An Emotional Reunion
Dr. John Byrnes, who over the years received upbeat notes and pictures from Bayer, finally reunited with her at her son’s house in Georgia a few months before the clinic visit.
“We shook hands and gave a gentle embrace,” Dr. John Byrnes said. “It was rather emotional because we both worked through an ordeal each in our own way, and it turned out so good.”
“Oh my gosh, I could’ve just held on to him and held on to him!” Bayer said. “He cried and I cried. His son was standing on the porch, and he looked just like his dad 50 years ago – jet black hair and real studious.”
They talked for hours. Dr. John Byrnes updated Bayer on findings in TTP and Bayer filled him in on decades of medical history. He handed her a legal pad and told her to write down her story. She mailed back an 18-page letter to the man she credits with saving her life.
“Not a day passes that I don’t remember him walking into the hospital room in a white lab coat, all serious and stern looking,” Bayer said. “He is my hero.”
Bayer had a stroke at 34, a stent at 50 and a temperamental digestive system. Dr. John Byrnes asked her to return to the clinic in Miami for a proper medical reevaluation.
“She was a very obviously historic patient, and I thought it was important to medically document what has transpired since that time,” Dr. John Byrnes said. “There are several difficulties she has had that are very relevant to what we have found out over the years about TTP, and I want to see if there is anything else we can learn about this disorder. We are going to try and link some things together and a publication will likely develop. It’s still an unfinished story.”
Continuing the Miller School Legacy
Dr. Diana Byrnes’, whose ‘passion for hematology was ignited by the complexity of diagnosing and treating patients with disorders that encompass all the body’s organ systems. She marvels at the fast pace of advancement in diagnostic tools and therapeutic options.
“It is amazing to see the evolution of the management of diseases such as TTP, where the mortality rate was extremely high before these groundbreaking discoveries were made,” she said. “Discoveries are continuing to happen, and it is an active area of ongoing research.”
One addition in the last six years is caplacizumab, a new drug approved for use in combination with plasma exchange and immunosuppression.
“The University of Miami is known as the referral center for TTP across all medical centers in South Florida and beyond to meet the TTP expert Dr. John Byrnes,” she said. “As his daughter, I am working to carry on his legacy. We are also doing collaborative research with centers across the country to continue advancing our knowledge and improving upon the achievements my father made.”
Living Life to the Fullest
While there are no follow-up visits planned with the Byrnes’, Bayer will stay in touch. Now 66, she lives with her husband, Mark, in Canton, Georgia. Though the ordeal left her unable to bear children, they adopted a son when he was just 32 hours old and now have a 12-year-old grandson. Bayer worked in aviation insurance before taking time off to raise her son. She is now enjoying retirement.
After her recent clinic visit, she and her husband headed down to the Keys for a vacation.
“Dr. Byrnes used to talk about Key Largo and, in my mind, I would visualize beautiful tropics like Hawaii, with catamarans and snorkels and scuba gear,” she said. “We went out on a catamaran and got to see the full moon and the sun setting.”
With each beautiful sunset, Bayer feels lucky to be alive.
Tags: Dr. Diana Byrnes, Dr. John Byrnes, hematology, Sylvester Comprehensive Cancer Center, thrombotic thrombocytopenic purpura