I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.
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When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.
Breastfeeding a child comes with a lot of challenges, dedication, and love. Breastfeeding a child with cystic fibrosis brings all of these aspects to a different level. As a first-time mom wanting to breastfeed exclusively, here’s what I have learned while breastfeeding my son, Isaac.
When the pandemic started, I started to feel lost and disconnected. That changed when I was introduced to a new program from the Cystic Fibrosis Foundation that taught me how to share my CF story with confidence.
As someone with cystic fibrosis, I struggled with the fact that I might be a burden to those who helped care for me. Things changed when I married Ramón and learned the true meaning of caregiving.
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.
When I became a nurse, I was determined to be punctual and reliable, and I excelled despite my cystic fibrosis. But on the advice of a CF doctor, I changed my career trajectory, which at first caused heartbreak, but eventually led to a leadership opportunity.
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.
Throughout my life with cystic fibrosis, I have marked many milestones. My most important one yet is holding a full-time job while managing my health.
My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.