I Have Cystic Fibrosis, and CF Has Me

I Have Cystic Fibrosis, and CF Has Me

I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say this statement is true. They conquer everything, despite CF.

I am not one of these patients. I am optimistic, though. I’m optimistic that one day I will sprint faster than you (with transplanted lungs). I’m optimistic that I will leave this world having made some kind of impact on those around me, and maybe others that I am unaware of. But with this DNA in the cells of my lungs, I can’t do it all.

I’ve had significant events and minute moments in my life that have been affected by CF, although it’s not always apparent to the world around me. However, I don’t claim that CF has altered my life for the worst. Instead, I show the reality.

CF had me most recently when I was planning to go to the Cystic Fibrosis Research Inc.’s Family Education Conference. Being a director for the U.S. Adult Cystic Fibrosis Association, I wanted to connect with fellow CF directors and hear about the amazing new research the CF community is eager to benefit from. Unfortunately, due to CF infection guidelines and the bacteria I harbor in my lungs, I posed a risk to other CF patients, so I was restricted from attending.

Recently, as my form of exercise, I have been playing tennis. CF has me when it grasps my airways after just a few serves. I feel my lungs expanding but not getting enough air, exhausted from a previous sprint of just a few feet. I watch as the ball spins toward the far corner of the court. In my mind, my legs are in the air moving toward it, but in reality, they have just elevated the sole of my foot for the first step. The muscles are depleted of oxygen, waiting for the next burst for them to spring into action, but it never comes. Instead, they continue straining with what little reserve they have, for one-quarter of their potential. The quarter that comes from the lungs that function at one-quarter of what they should.

CF dictated the direction my life would take when upon graduation I was offered my dream job, but I didn’t take that career path. Spending four hours a day on breathing treatments, attending frequent doctor’s appointments, having occasional hospital stays and health insurance factors, as well as maintaining a social life and community involvement weren’t conducive to a full-time working schedule. Choosing not to advance in my career as my peers did made me feel left behind. Instead, keeping my health as the focus, I chose part-time employment.

CF has me when I have an exacerbation and lots of congestion in my lungs. On occasion during these times, I’ve taken the flight of stairs from the basement out into the sunshine after work. After a few steps outside, I feel the absence of air in my lungs. I gasp and then panic. Thoughts flood my mind, “Will I pass out on the pavement?” “Is my lung collapsing again?” I have these thoughts when I’m unable to breathe. Until my breath evens out, and my heart rate slows, I say to myself: “Ella, keep taking one small step, one next breath.” From the perspective of someone walking or driving by, this event would be unnoticeable unless they looked closely at my chest rapidly rising or heard the crackling sounds my breath makes as the air squeezes past mucus-filled lungs.

CF will have me when it comes time to have a family. The likelihood of being able to physically carry a child is reduced due to the safety of my health and infertility. In addition to these considerations, there are other unknowns, for example, whether I would be in good enough health to raise a child if I adopt or use a surrogate.

These are some of the ways that my life has been affected by CF. Most of the time, it’s not bad, but it is a deviation from what I’d expected. I don’t feel that I have missed out on life because of CF. I’ve traveled to Europe and sat in front of the Colosseum in Rome doing breathing treatments! Yet, I recognize sometimes this disease stops me from taking that next leap.

The effects on my health that are bad could always be worse. It’s relative. If you compare your situation to one you deem worse, then your situation is fine. Kind of like the half-full, half-empty analogy — it’s how you look at it.

If CF didn’t have me, these events in my life would play out differently. CF gives my life spontaneity.

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.