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.
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.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
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.
Whether you're considering a lung transplant or maintaining your health if you've had a transplant, this list can help you learn about transplant centers, including the one your cystic fibrosis care team may have referred you to.
People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.