Why I Refuse to Let My Lung Function Define My Life

When it comes to lung function, I like to remind myself that the numbers aren't everything. Although my numbers may be “low,” they do not define my ability to live a full, happy life.

Nov. 30, 2017 | 4 min read
Meagan Tenyer

When I was diagnosed with cystic fibrosis at the age of 8, I had practically been symptom-free -- with the exception of the gastrointestinal (GI) symptoms caused by CF without taking enzymes and a reappearing rash -- which the doctors chalked up to bug bites or several different food and drink allergies.

My mom is the reason I received a confirmed diagnosis of CF. After searching through her nursing books, she found a photo of the rash that I had been experiencing multiple times a year, and under the picture were the words “See CF.” My mom then demanded a sweat test from my pediatrician. As you can guess, the results came back positive.

Despite having a very healthy and active childhood, as soon as the teenage years hit I began to have a pretty tough time, experiencing my first PICC line at the age of 13 and CF exacerbations about every three months. Even though I had a nurse as a mother and was 110 percent compliant with my treatment and therapies, I still lost about 60 percent lung function over 15 years.

Fast forward to now. I am 28 years old and have a low enough lung function that I “should,” from outside standards, be eligible for a double lung transplant. And yet, I've been worked up for a transplant multiple times over the past five years, and each time was told that I am functioning at a much higher level than a “typical CF patient” with similar low lung function. In other words, I am functioning at a level that's too healthy for a lung transplant, and yet my numbers are saying that I'm there. Each day, I am living in the unknowns.


I have been working full-time since 2013 and, thankfully, am continuing to do so. I work in patient education and absolutely love my job. Last year, I completed my MBA -- a goal that I slowly worked to achieve over a three-year period in addition to my full-time position. My husband and I love to travel, and try to take multiple vacations during the year.

Despite what the numbers say, I am living a full life.

Living in the unknowns has taught me to appreciate family and friends, and has made me look at life differently. It's made me realize that I am physically doing ALL that I can to keep myself healthy. It's telling me that waking up at 5:30 a.m. every day before work -- to complete my treatments, vest, and exercise routine -- has not been in vain, and that I'm doing everything I can to keep myself off the transplant list for as long as possible. It's given me continued hope that when the Cystic Fibrosis Foundation finds new medications and, eventually, a cure, my lungs will be healthy enough to hopefully reap the benefits from it.

In an odd way, I like living with these unknowns. Because for me, the unknown also means possibility. There is a possibility that I will continue to function despite having low lung function, and continue working full-time for many years to come.

As my doctor says, “the numbers aren't everything.” And so, I do not let them dictate my life. Do I have limitations? Of course I have limitations. I cannot do everything a “normal” person can do. BUT, I can still have a completely full, happy life despite having low lung function.

While I breathe, I hope.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Meagan was diagnosed with cystic fibrosis at 8 years old. She has been volunteering and fundraising for the Cystic Fibrosis Foundation's Great Strides event since the early 2000s, as well as for CF Cycle for Life since 2015. She spends her days working in patient education at her local hospital, and is heavily involved in her care center's CF patient advisory group. Her hobbies include traveling, photography, the beach, and spending time with her family and husband, Justin.

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