Reuben Samuels says he struggled to get health care professionals to listen to his quality-of-life concerns as an adult with cystic fibrosis (CF) until he met Ranjith Ramasamy, M.D., associate professor of urology and director of reproductive urology at the Desai Sethi Urology Institute at the University of Miami Miller School of Medicine.
Samuels will have the opportunity to share his story about his life-changing experience with a worldwide audience of urologists at the American Urologic Association (AUA) 2023 in late April. Dr. Ramasamy and Katherine Campbell, a Miami Andrology Research Scholars Fellow mentored by Dr. Ramasamy, will travel to the annual meeting in Chicago and support Samuels’ presentation at the AUA’s Patient Perspectives program.
“The AUA Patient Perspectives program is an innovative initiative aimed at bringing patient voices into the fold, elevating awareness, and encouraging patient-physician communication and shared decision-making,” Dr. Ramasamy said. “The program's success is evidenced by its return in its second year and how it reaffirms that importance of patient advocacy to clinicians and the AUA. Reuben’s case is unique because it will provide an opportunity for doctors to learn from his experience and gain valuable insights.”
Cystic Fibrosis and HRT
Health care professionals would dismiss Samuels’ complaints of brain fog, weakness, and low energy as being part of CF, but he wasn’t buying it.
Samuels, a certified personal trainer, said that as his health declined, his symptoms of lethargy, problems with comprehension, muscle wasting, and osteoporosis became extreme.
“I pushed for testing and was found to have low testosterone,” Samuels said. “After being refused treatment by an endocrinologist, I sought hormone replacement therapy (HRT) from another provider and my symptoms rapidly improved.”
In April 2019, he received a double lung transplant and was told by his transplant team to stop hormones.
“With no taper, I crashed, and five weeks post-op, I restarted testosterone against medical advice,” Samuels said.
He continues hormone treatment but had to seek help outside his CF care team.
‘Sexual Health Beyond the Standard Fertility Conversation’
Samuels felt alone in trying to get answers for problems that weren’t life-threatening but were ruining his quality of life. Things changed, he said, when he met Dr. Ramasamy through an online educational seminar.
“I was extremely interested in participating when I saw that a top urologist was going to finally address male hormones and sexual health beyond the standard fertility conversation that most CF patients have heard,” Samuels said. “This was the first time, in my nearly two decades of trying to find answers on my own, that a physician had stepped forward to directly address these issues that have been massively ignored or brushed aside as a low priority.”
Samuels is Dr. Ramasamy’s patient, and the two continue to work together to move health care from a survival mentality to a true goal of helping chronic illness patients thrive, according to Samuels.
“About three years post-transplant, my lung function is outstanding, I have reversed bone loss, gained more than 20 pounds of skeletal muscle, and maintain a high level of physical fitness. Contrary to expert opinion, my success cannot be attributed only to new lungs,” Samuels said.
The battle for information around sexual health optimization for men with CF and for men after solid organ transplant remains difficult, but Samuels is trying to help change that. One way will be through the opportunity with AUA.
“My hope is to connect and impress upon the audience, from the tenured professionals to the students, the importance of quality communication with their patients. When both parties are speaking the same language and truly communicating, medicine improves across the spectrum,” he said.
Campbell, a fourth-year medical student at the University of Missouri, said the experience with Dr. Ramasamy and Samuels has been a lesson in the importance of providing compassionate, patient-centered care.
“Listening to Reuben's story has reinforced how important it is to me as a future physician to truly listen to my patients,” Campbell said. “I chose to come spend an extra year during medical school as a MARS scholar with Dr. Ramasamy so that I would have the opportunity to work on not just groundbreaking research, but innovative patient care programs and abstracts like this.”
Watch Reuben Samuels’ patient testimonial to learn more about his story and his advocacy for other patients.