Why CF patients remain hypervigilant about care as systems change

Cystic fibrosis (CF) is different for everyone. I have two rare CF mutations, and my disease has never followed the “typical” course. But one thing I believe is true for all of us living with this disease is that we know our bodies better than anyone else.

For the first half of my life, my CF care team was made up of one doctor, a CF specialist. When I was admitted to the hospital, day or night, he’d arrive. I can still picture him walking into the unit with my thick, handwritten chart tucked under his arm. He would take over at the nursing desk and instruct the nurses to do my chest physical therapy instead of leaving it to the respiratory therapy team. Then he’d stay until everything was exactly how he wanted it.

That was how many of the old-school doctors cared for their patients. I didn’t fully appreciate what it gave me until much later. During those hospitalizations, I could climb into bed, shut down, and truly rest. I knew he was out there overseeing everything. I didn’t have to monitor my own care because someone who knew me, my history, and the idiosyncrasies of my disease was doing it for me.

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When he retired, I moved to a new team. They are amazing and have helped save my life through a double-lung transplant. I will always be grateful to them, as they truly know me and my CF. But hospital care today looks different. My transplant team is part of a much larger acute-care system that includes intensive care unit physicians and other highly specialized providers, each brilliant in their own area.

CF, however, is a niche specialty, and every person with CF has their own unique medical history and needs. When we’re hospitalized, we’re in the right place to receive care, but the person standing at our bedside may be meeting us for the first time, depending on who is on call. That’s where my hypervigilance kicks in.

There are medication allergies and intolerances that must be taken seriously. Many of us, myself included, live with CF-related diabetes, which requires individualized treatment rather than a one-size-fits-all protocol. And we carry years of experience knowing what works for our bodies, what doesn’t, and which warning signs mean something is wrong.

So, when we get into that hospital bed, vigilance can become hypervigilance. We double-check the medication that’s being started and ask about the dosage. We explain our history, then explain it again when the shift changes. We listen, watch, question, and sometimes struggle to let ourselves rest.

I want to be clear about what this is, because it can easily be misunderstood. It is not noncompliance. It is not being difficult. And it is not necessarily a lack of trust in the people caring for us.

It is often the result of years of medical trauma and an intimate understanding of our own complicated disease. Many of us have experienced the moment when something was missed, a treatment was delayed or skipped, or an important need was overlooked. We remember what it cost us. So we speak up because experience has taught us that speaking up can be the difference between a difficult hospital stay and a dangerous one.

To the nurses, respiratory therapists, residents, and physicians who care for people with CF: When your patient asks a lot of questions, please understand what may be behind them. We are not questioning your skills. We are trying to be the missing piece of continuity of care, the person carrying the whole chart in our heads, much like that one doctor once carried under his arm.

Please listen to us. Our history is a resource, not an obstacle. And, in my experience, the teams that recognize this build stronger relationships and provide better, more individualized care.

To my fellow CF peers: Keep advocating for yourselves. You know your body and your history. You have earned the right to be heard.

And if you’re lucky enough to find someone who takes over at the nursing desk and won’t leave until everything is right, hold on to them.

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.