Patient Story ID: 1414619

Background

Historically, the lifespan of cystic fibrosis (CF) patients was early adulthood, so CF specialist physicians were not well trained in the sexual health aspects of the disease. As a result, patients were not fully educated and were left to advocate for themselves for sexual health concerns. As a patient born with CF, I knew from adolescence that I was likely infertile, but was not aware about the additional sexual/hormonal challenges. Even after seeking information, I received poor information and ignored by my health care team as the problem wasn’t deemed “life-threatening.”

Approach

Despite 30 years of research on the topic, it is not routine to investigate reproductive hormone abnormalities in CF patients. As a young adult, my complaints of brain fog, weakness, and low energy were dismissed as part of my CF. Only when I became a certified personal trainer and was surrounded by men using illicit performance-enhancing therapies did I understand that muscle wasting, poor recovery, and fatigue might not just be due to respiratory pathology.

As my lung function and health declined, my symptoms (lethargy, comprehension, muscle wasting, and osteoporosis) were pushed to the extreme. I pushed for testing and was found to have low testosterone. After being refused treatment by an endocrinologist, I sought hormone replacement therapy from another provider, and my symptoms rapidly improved. In April 2019 I received a double lung transplant and was instructed by my transplant team to stop hormones. With no taper, I crashed, and 5 weeks postop, I restarted testosterone against medical advice. My hormone treatment continues to be done outside of my CF care team.

Maintenance

About 3 years post-transplant, my lung function is outstanding. I have reversed bone loss, gained >20 lbs of skeletal muscle, and maintain a high level of physical fitness. Contrary to expert opinion, my success cannot be attributed only to new lungs. I do feel let down that fertility preservation options prior to lung transplant were not financially feasible. However, I am thankful for this renewed life. As I know my experience is not unique, I hope that everything I learn helps another man with CF avoid these difficulties.

Quality of Life

The battle for information around sexual health optimization for men with CF remains difficult. As I continue my health care journey as a patient, peer mentor, and professional educator, I see the conversation around hormonal function to be key. Health care doesn’t work unless patients and providers can speak as equals through open dialogue and trust. It will forever be my goal to fill the knowledge gap to move health care from the practice of surviving to one of truly thriving.