A sudden health setback turned my eventual lung transplant into an immediate one. Although the transplant didn’t go exactly to plan, my preparation helped the process go more smoothly.
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In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.
A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
My brother, Josh, who has cystic fibrosis has been through more struggles than anyone I know, but he has always kept a positive attitude -- even while awaiting a lung transplant. This outlook on life inspires me and helps me see the best case in any outcome.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.
Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.