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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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Matison smiling in a hospital bed holding a plush toy in the shape of lungs


Voicing My Health Needs Before and After Transplant

I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.

A headshot of Matison Deaton smiling outside
| 7 min read
A portrait of Lauren with her husband and three children cuddling in bed.


The Importance of Self-Advocating After Transplant

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.

A professional headshot of Gerry Sweeney
| 6 min read
Molly Baker and her mother, Ann, sitting together at a formal dinner.


A Tribute to My Mom’s Selfless Dedication

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.

Molly Baker headshot.
| 7 min read
Portrait of Leslie Colwell and her immediate family


Living 26 Years Post-Transplant

In the 26 years since my double-lung transplant, I’ve lived through cancers and other post-transplant complications. It’s been difficult at times to remain positive, but I won’t give up. I’m a fighter.

Portrait of Leslie Colwell in black and white
| 6 min read
Patti Prince posing with her family and dog


What Living 16 Years Post-Transplant Has Taught Me

I had double-lung and liver transplants 16 years ago. Although nothing is guaranteed after transplant, here’s what I’ve learned maintaining my health after transplant.

Patti Prince headshot
| 7 min read
Maura Wozniak smiling at the beach with her husband and two children.


Having Tough Conversations With My Kids About My CF

Since my kids were born, I’ve had two lung transplants and spent months in the hospital at a time for cystic fibrosis complications. It’s just as hard for my kids to go through as it is for me, so we make sure we talk about my CF openly as a family.

| 4 min read
Brian outside pointing at the Golden Gate Bridge


The Good and Bad of Transplant

The road to recovery after a lung transplant can be long and arduous. It took me awhile to appreciate all the benefits, but I am blessed with the ability to breathe and a new-found confidence that has emboldened me to try new things.

Brian Armstrong
| 6 min read
Tara smiling with her partner.


Fear of Living Life Fully After Transplant

I’m still trying to define who I am after a double-lung and liver transplant five years ago. Although I am much healthier, I sometimes still struggle with my physical and mental health, and I don’t know what I want to do next in my life.

| 8 min read
Jerry smiling with a thumbs up with his nurse in the hospital while wearing a mask.


Transplant Recovery Then and Now

I underwent liver and kidney transplants in 2021 after a successful lung transplant in 2012. For a number of reasons, the recovery from second transplant was much more difficult.

Jerry Cahill Headshot
| 5 min read
Kasey standing in front of a chalk mural that is a picture of rainbow wings.


The Best Reluctant Decision I Ever Made

I resisted being listed for a lung transplant; but now, almost six years later I’m thankful — especially to my donor — for my new life.

Kasey Raffensperger headshot
| 10 min read
Larissa in a hospital gown hugging her son after her lung transplant.


Redefining Myself After Lung Transplant

A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.

Larissa Marocco headshot
| 7 min read
Lauren Molasky sitting down on the couch with her husband, two children, and dog.


Year Two in the Pandemic

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.

Lauren Molasky headshot
| 5 min read