10. A Service Dog for My Student with CF
By Rachel Jackson, RN
As a high school nurse, I've worked hard over the last few years to help my three students with CF navigate school safely. A welcome but unexpected change to my plans was helping one of my students get her very own service dog, Rosie.
9. What Does “Better” Mean on Trikafta?
By Elizabeth Amber
The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the new drug.
8. The Two Sides of Loneliness
By Holly Seay
I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
7. Diagnosed with CF at 47
By Kathy Norris
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with.
6. Just Because I Can't Work Doesn't Mean I Am Lazy
By Jenny Livingston
In an ableist society, sometimes you just have to ignore comments that make you feel worthless for not working. If I had the chance, here is what I would tell people who judge those with an invisible illness.
5. What I Wish People Knew About Lung Transplants
By Lauren Molasky
My relationship with the idea of a lung transplant has changed over time. Although I'm approved for transplant now, it is a complicated process with a full range of emotions. Here's what I learned along the way.
4. Coping with the Loss of My Brother to CF
By Melissa Shiffman
Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family and friends, and invite them to share in my memories.
3. A CF Nurse Practitioner Talks IPC and Five Feet Apart
By Betsy Bryson MSN, PPCNP-BC
With Five Feet Apart hitting theaters in March, we've been getting some questions about infection prevention control and what the film might mean for the CF community. Here's what our CF center and hospital have been doing to support the IPC guidelines and encourage questions among our patients and families.
2. Things You Shouldn't Say to a Parent of a Child With CF
By Misty Roussa
After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
1. The 3 Words I Want Every Single Hospital Employee to Hear
By Elise Free
As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.