I underwent liver and kidney transplants in 2021 after a successful lung transplant in 2012. For a number of reasons, the recovery from second transplant was much more difficult.
Site Search
After two kidney transplants and one double-lung transplant, I am currently doing dialysis treatments as I wait for my third kidney transplant. Keeping a positive attitude and having friends and colleagues who support me have helped me adjust to life on dialysis.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
It can be a lot to manage two children with cystic fibrosis who have other health issues. I made it work by making my children responsible for their own treatments and not sweating the small stuff when we can't be perfect.
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.