My involvement in the CF community is twofold — first and foremost through volunteering and event participation such as Great Strides and Cycle for Life, and secondly through advocacy. To begin, I've had two double-lung transplants — the first being on Aug. 13, 2011 and the second on Oct. 11, 2016. I went through chronic rejection in early 2016 which progressed so rapidly I needed to be hospitalized and put back on the transplant list. That point in my life was the most emotionally rigorous time I have ever gone through still to this day. 

I noticed, as maybe others do, that I tend to become more involved with the CF community when I'm going into or coming out of a significant event with my disease. I lean into the Foundation and my CF peers when I'm in need of deep understanding and connection that only someone who has CF and/or has undergone lung transplantation can provide. 
I have been on the planning committees for both BreatheCon and a transplant-specific virtual event, acting as a speaker and moderator for multiple sessions in hopes that sharing my journey and experience will help others. I have gone to my state capitol of Sacramento, Calif. to talk to my state and federal lawmakers about the complexities of living with cystic fibrosis and the importance of having access to affordable, adequate care and supporting research and drug development. 

With my passion being focused on advocacy for lung transplant and treatments for chronic rejection, I have currently taken a position on the CF Lung Transplant Consortium Steering Committee, which is a collaborative that meets monthly and aims to improve care and outcomes for all individuals with CF and their families pursuing or undergoing a lung transplant. 

I'm the type of person who likes to give back to the resources I utilize myself. Because of that, I am also currently involved in CF Peer Connect and the Lung Transplant Foundation as a mentor specializing in advanced lung disease, transplant, life post-transplant, chronic rejection, employment, and emotional wellness.

In 2018, CF Peer Connect matched me with an incredible young lady, Brittani, who at the time was struggling with the progression of her disease and feeling disconnected from other young adults.

CF can be very isolating at times, especially when there is a loss of control — not just of your health, but of feeling human and valuable — due to not being able to work, go to school, or even take care of yourself.

Brittani hit that point and reached out for help, and I'm so damn proud she did, as we have solidified a bond deeper than I had ever imagined. I've invited Brittani to share what this was like from her perspective: 

I remember being in tears at the hospital after being diagnosed with septic pneumonia and a mycobacterium infection that plummeted my lung function. I said to the social worker, “I need help, I cannot do this alone anymore.” Aside from my mother, grandfather, and a tight-knit group of friends, at age 19, there just was something so isolating about knowing no one with my progressive disease. 

At 16 years old, I had left high school to finish my schooling online due to my disease progressing, and while I was still incredibly healthy “CF-wise,” for self-preservation purposes, I had to do things at my own pace. Leaving high school further isolated me from my peers. So, at age 19 I finally felt the urge to connect with others who had my disease. Although it was scary, I was also hopeful that I would meet someone who related to my journey, feelings, and lifestyle. That is where Samantha (Sam) came in. 

I remember after our very first Peer Connect call, I cried when I hung up. I’m not sure to this day, seven years later, if I have ever shared this with her.

Sam was so forthcoming and almost blunt about what she had gone through. Having had two lifesaving double-lung transplants, she made no apologies, nor did she walk on eggshells when sharing her journey. That’s exactly what it should be like, but still this shook me to my core. 

I knew that my disease was ultimately supposed to kill me, and in the back of my mind, I feared passing before my mother and grandfather. After hearing Sam’s touching and terrifying journey, I questioned if I had the guts to continue with the CF Peer Connect program. It was after that first call that I took a deep step into gratitude and leaned into my yoga roots, pushing my mental and physical stamina. Sam helped me see that getting involved in different CF activities could also strengthen my bond with my own body. Sam had suggested joining the virtual CF choir called sINgSPIRE, provided by the nonprofit Breathe Bravely. That program not only helped me meet even more fellow CFers, but it also once again made me lean into gratitude for being able to sing with my lungs and tap back into a talent I had let go of in my teens. 

Being able to truly talk about my feelings and fears of my disease with Sam allowed me to use my voice to do volunteer work with the Arizona Chapter of the Cystic Fibrosis Foundation. Sam was the first person who got me to realize that I was a woman who happened to have a disease. Sam’s passion for mountain biking, volunteer work, her job, being a compassionate friend — all while being such a voice in the CF community — made me realize CF wasn’t Sam, and Sam was not CF. Samantha was a woman with all these passions, who just so happened to have a disease. 

I’ll be honest, after our mentee/mentor relationship through the program officially ended, I don’t remember what it was that inspired us to keep in contact all these years, but I’m so thankful we did. CF Peer Connect helped us form not only an inspiring, therapeutic connection for me, but it was also the catalyst for my first and strongest CF friendship. 

In 2022, Sam not only played a friend role, but put her mentor hat back on when I suffered the loss of my dear friend who lost her battle to CF while awaiting her second double-lung transplant — a tragic story no one could connect to more than Sam. While I was worried about triggering Sam and taking her back to this time, she assured me that this was part of why she had signed up to be a mentor in the first place. I don’t know that I would have had the tools to deal with my friend’s battle and passing without Sam’s help.

In November 2019, Samantha was on vacation about a half hour from where I lived. We decided to meet one another in person using every CF precaution and guideline possible — including wearing masks, remaining six feet apart, and making sure not to sit directly across from each other — to draw our connection even closer. It’s kind of funny that just a few months prior to COVID-19 we were sitting the original "six feet apart" and talking like we had always known one another. I will forever remember that day and was honored when she asked me to partake in writing this piece. It will never matter how far we live from one another or how many weeks we go without speaking, we always make sure to connect once a month for a laughter-filled, loving phone call. 

I thank Samantha for following such a unique calling to sign up to be a mentor. I believe some of us are put on this Earth to serve a greater purpose, and Sam is definitely one of those humans. I encourage any CFer who feels alone right now, has questions their doctors can’t answer, or just wants to see what life looks like outside of their own CF body to join CF Peer Connect and let the journey take you places you never thought possible.  

In closing, when I think about the intention behind my involvement within the CF community, it comes down to connecting and meeting people where they are at with compassion and without judgement. People with cystic fibrosis are more than just fighters. We are friends, we are parents, we are coworkers, we are advocates, we are innovators, and we are changing the world.   

Interested in sharing your story? The CF Community Blog wants to hear from you.