What I've Learned Living with Cystic Fibrosis
When you’re in your 20s, you usually find yourself in the workforce putting all effort and dedication towards a budding career. Making a name for yourself in your chosen career field, and celebrating (or relieving stress from) a busy day at the office. That is where I proudly found myself—until age 28 when it all seemed to come to a screeching halt.
I was born with Cystic Fibrosis (CF), a genetic disease that affects the lungs and digestive system. At four years old I became sick with pneumonia. While being treated at the hospital, they tested me for CF since I displayed multiple symptoms. Although I was, what some would deem a “sick” child, I did everything—with encouragement from my doctors and parents—that my peers did. I went to school, birthday parties and family vacations. I played on team sports and rode a bike with my friends. While I had to do nebulizer treatments, take pills, and see my doctors more than most kids, I lived a “normal” life.
While in high school I worked hard to get accepted to art school so I could pursue my dream career of becoming a graphic designer. After I graduated art school, I moved across the country to complete a graphic design internship that would turn into a ten-year career. My doctors and parents brought up the topic of leaving my job to focus on my health multiple times. Each time I just told them I wasn’t ready. Here I was in my late 20s, my career on the upswing and I was just supposed to leave it? Of course ego got the best of me too and I thought there was no one else who could take my place.
But each time when I would get a cold or flu, I couldn’t get rid of it with simple rest and fluids like most people. Instead, my sickness would turn into pneumonia or various lung infections. I was being hospitalized about twice a year due to lung infections, which required heavy antibiotics that could only be administered through an IV. I was taking weeks off from work to be admitted to the hospital. Something had to give.
So at 29, a bit reluctantly, I retired. I found myself in a deep depression. I would cry frequently and lose sleep night after night. I felt lost and hopeless. My world was thrown into chaos, while everyone else’s just kept turning. I began seeing a therapist and after multiple sessions I also began taking an anti-depressant. Addressing and expressing my feelings helped me find a way to successfully live with depression. But my stability would be tested again when my doctors told me that I was approaching end-stage Cystic Fibrosis. This meant that I would need a life-saving double lung transplant.
Once again, I felt overwhelmed. Honestly, I had not thought about it, nor did I know anything about the process of waiting for donors, surgery and recovery. But, as my doctors explained, I was lucky that I was healthy enough to be considered a candidate, and that could quickly change. After two weeks of testing, poking, scanning, and enduring countless blood draws, the board accepted me to the transplant list.
My life, for the past three years, has been about my disease. Machines and medicines crowd closets and cupboards. I’m constantly tethered by cannula to something that dispenses or produces oxygen, and I’m well aware of every single difficult breath I take. I knew that to be listed, I was classified as “end stage CF,” but I never thought of myself that way until recently. One of my doctors had the unfortunate job of suggesting to me that I consider filling out a living will and healthcare surrogate form. I bawled my eyes out. Not because of what was asked of me, but because I had heard verbally those dreaded words: “end stage.”
I hit bottom once again. I was as depressed as I could possibly be. I could count down to hospitalizations, they were so frequent. My weight was the lowest it had been in seven years, and I just wanted to crawl in to bed and stay there. There were many nights of crying and anxiety attacks. I was giving in to the realization that things couldn’t get better without new lungs. And there was a good chance I was never going to get that call. I thought that maybe I should just take myself off the list and do all the things that were on my post-transplant list. I spent two years not able to travel, missing friends and family events like weddings and graduations, and putting on hold getting married to my soul mate.
I was ready to accept making the best out of whatever time I had left. I don’t know when or what it was exactly, maybe it was just the sheer exhaustion from fighting. But what I realized was that throughout the past three years, my sickness wasn’t the only constant thing in my life. In my corner were my fiancé, my friends, my parents and my brother. With their help, I made it through every trip to the ER, every hospitalization, every procedure and mental block that came my way. I was fighting—and winning. They never gave up on me, so why was I so ready to throw in the towel?
This isn’t to say things are all magically better. I still live with depression and anxiety, but I feel as though I’m back to being hopeful like I was when I was listed for transplant two years ago. I believe it’s going to happen and I have a growing list of goals I’m going to accomplish after the procedure. I can see myself pouring everything into working through recovery, and fitting into my dream wedding dress, my dad walking me down the aisle—no oxygen tank, no shortness of breath. There are many tiny things I have as goals too: I want to be able to shower and wash my own hair again, buy a bike (with a basket for trips to the library), walk my dog, take steps instead of elevators, and even face my fear of water and learn to swim.
I have to realize along the way that the small accomplishments are just as important as the big ones. I may not be able to gain 30 pounds like I could in the past, but the 3 pounds I did gain is a great thing and will help me be stronger for my recovery after surgery. I have struggled all my life to accept myself and to not feel like like I’ve missed out or failed at things. I will never be back to my life before, but that’s not a bad thing. I have a life ahead of me and new memories to build. And that’s just what I intend to do.