“Inhale. Exhale. Repeat.” Waiting For A Lung Transplant With Cystic Fibrosis

Renu Linberg is a 25 year old woman living with cystic fibrosis. She is waiting for a life saving lung transplant due to progression of her lung disease. I have known Renu for nine years and consider her to be a friend. I have always been struck by her sunny disposition and positive outlook in circumstances that are quite difficult. I asked her to write a piece about how she has stayed so positive and upbeat.

Renu is unfortunately like many others waiting for a life-saving solid organ transplant. According to Organdonor.gov, almost 120,000 people are waiting for organ transplantation, and eight die every day. One donor can save eight lives. If you aren’t already registered, please do so. 

I was diagnosed with cystic fibrosis at birth, at a tiny community hospital in western Massachusetts, and twenty-five years later I am awaiting a double lung transplant. Life with a chronic illness is something that I’m still learning to navigate, and the world of transplant is relatively new to me. Despite this new challenge, I have found that I’m able to remain optimistic and content with my life, and its wildly unpredictable ways.

My early life was never defined by CF, and I was able to stay out of the hospital until I was a teenager. My parents and grandparents played a huge role in keeping me healthy. They educated themselves early on, and helped to guide me through my childhood and teenage years without placing a heavy emphasis on what CF might mean later in life. They kept life normal, never made a big fuss about chest pt, and signed me up for every sports league, gymnastics team, and ice skating lesson that they could find. I was active, and my lungs were happy.

My parents did a lot of research about cystic fibrosis centers once I reached high school and the hospital admissions started. Massachusetts General Hospital was a trek from our home, but one of the best in the country, and for that we’ve all been grateful. Despite more frequent admissions, I remained active. My parents maintained an open dialogue about drinking, drugs, and smoking, and the effects it would have on my lungs and overall well-being. I rebelled by dying my hair and piercing my nose instead. I found a group of very active friends who chose to kayak and hike and partied with root beer and pizza, and that worked in my favor.

When I began college, CF moved to the forefront, and quickly became a priority over higher education, a career, and my dream of traveling and studying abroad. I struggled immensely with the idea of temporarily letting go of my college dreams to spend time in a hospital instead. CF can be an uphill climb, one with no degree or graduation ceremony at the end. It was an adjustment period where I realized that while I would prefer to expend my energy in an outward direction, towards earning degrees and exploring the world, I would have to shift instead to focusing my energy inward, to my lungs. That was a few years ago, and I am just now on the verge of getting a transplant. This has been a long and challenging process of letting go of my ego and learning to accept what I’ve been handed. However, I am optimistic. I enjoy life, and always have, and that hasn’t been lessened by a chronic illness.

On the contrary, healthy days and time spent at home are a gift, and I’m positive that having CF has opened my eyes to how appreciative I am of this life. I never enjoy sitting in my car, even in a traffic jam with a broken air conditioner in July, as much as I do after a long hospital stay. Moments with friends and a warm cup of tea are most delicious when unaccompanied by an IV pole, and a good night’s sleep is hard to top.

That’s not to say a chronic illness is always easy, life never is, and hard days are inevitable. I’m trying to get comfortable with being uncomfortable, with the stressful days, with the breathless, can’t-get-off-the-couch days. I am learning to sit through those moments, and acknowledge the anxiety, or fear, or stress. For once those emotions get acknowledged, they seem to have less of a hold on my mind, as though that’s all they wanted in the first place. However, as my body has slowed down, my ability to cope has changed. Where I was once able to go for a swim or a hike, I can now only walk very slowly with a lot of oxygen pumping into my nose. I practice a much-modified version of yoga which is primarily stretching or relaxing in child’s pose. I am still able to meditate, and frequently find myself taking a few quiet moments away from the television and phone and daily life distractions. I will sometimes pick up a book, and attempt to lose myself in fiction for awhile. It feels healthier than watching hours of television, but sometimes I do that, too. And I often reach out to my parents and close friends for love and support. A good support system is one of the main things that has allowed me to remain sane while on the waiting list, their love and humor and Starbucks deliveries are invaluable.

And while it certainly isn’t a conventional life, the best ones never are, I am grateful for this opportunity to slow down and be present. That is something I will take with me long after a transplant

You can follow Renu’s progress on her page Inhale.Exhale.Repeat. Please register to be an organ donor here. If you would like to read another first hand account of a young woman with cystic fibrosis, please read about Emily’s Entourage at Seattle Mama Doc.