Even though it was scary, I made attending medical appointments during the pandemic a priority.
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Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
I went through my first surgery recently. I want to share what I learned during my recovery.
I've found an airway clearance routine that works for me by relying on knowledge of my body and breath control, combining conventional airway clearance with yoga breathing techniques.
After several months of telehealth visits with my care team, I returned to the clinic for an in-person visit. Because of COVID-19, some aspects of the visit were different than before.
COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.
When our daughter was diagnosed with cystic fibrosis, all I could think about was walking into that first CF clinic appointment and walking out with “the vest.” Although transitioning to the vest was the change I feared the most, it's been a welcome change to our once-difficult routine.
When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.
According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.