Hormones seem to be a mysterious, unknown part of chronic illness care unless you are talking about reproduction or diabetes. This MUST change. Hormones aren’t just about sex, erections, and pregnancy. They allow the entire body to function, rebuild, fight infection, and perform other operations. The fact that they are often ignored or misvalued in the healthcare equation is a massive oversight.
Before my lung transplant in 2019, I was at 16% lung function, and nearly every area of my health was failing. Among the many things I was looking into were my hormone levels. I had read a 1984 study that suggested a large portion of the CF male population had low testosterone, which is called hypogonadism. It was suggested that all CF males after 18 should have their levels checked. I had never heard this. Fast forward 4 months, and after my low testosterone (low T) level was confirmed, I began hormone therapy. At 16% lung function, I noticed several positive impacts: I gained 9 pounds of muscle, my mental health and clarity improved, my sleep cycles became better, and my energy levels increased. I battled with my care team on testosterone supplementation post-transplant, and I chose to continue the therapy. I am five years post-transplant and the healthiest I’ve ever been, not just because of the new lungs. One of the many markers of success is that my skeletal system has completely recovered from my severe osteoporosis diagnosis, which is something I was told would not happen.
It took me nearly two decades to understand that hormones are essential to overall health, and almost just as long to get anyone to give me information or to take my hormones seriously. When I finally got proper care, it was life changing. When our hormones are at optimal levels, everything else we ingest or supplement, and everything we do physically, is given a better environment for success.
This personal hormone health journey led me to work on a male sexual and reproductive health (SRH) program with BreatheStrong CF three years ago. This program aims to raise awareness of the SRH issues faced by males with CF. We host meetings on a focus topic with expert speakers such as researchers, providers, or peer panels, and offer a Q&A with the presenters followed by time for attendees to share stories with peers. Hormone, sexual, and reproductive health doesn’t need to be an uncomfortable conversation. If you’ve never spoken to your doctor about hormone health before, it is never too late to start. Being inquisitive and advocating for yourself are both essential components of building positive health and wellness.
By Reuben Samuels
This post is not intended to provide medical advice. Always consult a healthcare professional for personalized treatment and before making changes to your healthcare regimen. To learn more about this important topic, visit CFRI’s YouTube channel and watch ‘Understanding CF & Men’s Sexual & Reproductive Health’ for a more in-depth conversation between Reuben Samuels & Georgia Brown, fellow adult with CF and co-lead of the Cystic Fibrosis Sexual and Reproductive Collaborative. Additionally, be sure to explore BreathStrong CF’s webpage for more information about Men’s Sexual & Reproductive Health.
