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.
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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.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.