Taking the Reins of My Own Care

One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.

| 6 min read
Rose Keller
Rose Keller
Rose playing the board game Monopoly in her hospital bed.

It was September 3, 2016. As all the other parents of incoming ninth-graders at The Putney School were carefully unpacking notebooks, hanging up posters, and putting away laundry, mine were handing me neb cups, attaching an IV pole to my bed, and plugging in my vest. As a soon-to-be boarding student living with cystic fibrosis, what was already an overwhelming day proved to be yet another instance in which my genetics exacerbated (to use my favorite CF-acquired verb) the situation. 

At some point in between our meeting with Health Services and our quest to find the perfect place in the dining hall to stash my enzymes, my mom, not unkindly, asked if I would like her to write out my entire daily medical regimen on paper.

In my infinite and resolute 14-year-old wisdom, I needed no time to formulate a response. 

“Absolutely not.” Even the suggestion that I would need such oversight was an affront to my autonomy and a manifestation of how little confidence my own mother had in me. She said nothing in response. 

I would come to discover in the following weeks, months, and years of my high school experience away from home that I leave something to be desired in the way of personal discipline. I began to skip vest treatments, then nebulizers. At times, my boxes of Pulmozyme® lay untouched in my mini refrigerator for weeks. Without the convenience of someone handing me every pill, my life quickly became indistinguishable from those of my healthy friends. 

Although I could tell it was catching up to me, I did my best to hide it. Cleverly timed muting of FaceTime meant that my parents rarely, if ever, heard me cough. Gmail’s “schedule send” email function allowed me to give those charged with my protection at Putney every reason to believe that I was perfectly adherent. In the CF clinic, my pulmonary function tests began to tell a different story. By mid-sophomore year, my FEV1 was lower than it had ever been in my life; I could not keep up the charade. 

My situation was described most succinctly on my CF care center’s patient portal website, under the “diagnoses” tab, immediately below “cystic fibrosis” and “pancreatic insufficiency.” “NON-COMPLIANT” it read, in all capital letters, followed by the unassuming (and only slightly less damning) “status: active” in lowercase.

I discovered this third diagnosis alone in my hospital room at age 15. Up until this point, I had attempted to look every loved one, Putney faculty member, and medical professional in the eye as I wheezily exclaimed that I was fine. But as I sat there, accused and bronchospastic, several new interpretations of my reality came into view. Perhaps I was sick. Perhaps my mom wasn’t ludicrous for offering to write up my treatment schedule. Perhaps belligerently clinging to my poorly fabricated facade of good health to the point of self-destruction would constitute a pyrrhic victory; one that would ultimately serve no one, especially me.

Teenagers have to learn by trial and error; by pushing boundaries and facing the consequences when plans go awry. I was no exception. It just so happens that for me and other kids with cystic fibrosis, the stakes are higher than for others. When I make a decision that my pulmonologist would label reckless – and I continue to make such decisions at college more often than I care to admit – whether that be a skipped vest treatment for the sake of a party, or studying during lunch rather than eating, it is not merely a bad grade that I risk; it is irreversible lung damage. I had to learn how to safely weigh the opportunity cost of doing my routine against its undeniable and considerable benefits.

Parents and caregivers of young people with CF are charged with this imperceptibly difficult task: instilling a healthy balance between life and treatment in their loved one without descending into utter micromanagement or sitting back as their loved one marches resolutely toward a lung transplant, or worse.

While the particular fashion in which I learned this balance gave my parents a few more gray hairs, my PFTs eventually returned to baseline as I begrudgingly reacquainted myself with my CF care.

My life’s trajectory could have been very different had I not been gently (and at times, not so gently) pushed in the right direction by my parents, my care team, and the first-rate faculty acting in loco parentis at The Putney School. I do not regret telling my mom “no'' on that particular afternoon; but I will forever aspire to embody the version of myself that compelled her to bite her tongue in response. 

What an immense feat of parenthood it was for my parents to drop their CF kid off at boarding school and to give her a wide enough berth to fail. It was a decision that led me to take charge of my medical care. It was a decision that equipped me with the tools to weather my first semester at college — in a nation halted by the pandemic — with relative ease. And it was a decision that allows me to look toward the future, to graduate school and beyond, knowing that I am self-sufficient enough to embark on whatever adventures call my name.

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

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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Topics
Adult Care | School
Rose Keller

Rose was diagnosed with cystic fibrosis at five months old. She is a junior at Bowdoin College where she is double majoring in English and Government. An active patient advocate in the realm of drug pricing, Rose aspires to attend law school after finishing her undergraduate degree. In the rare moments when she isn't studying, she can be found at the barn with her horse, Diego.

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