How to become aware of the hidden fall risks in life with CF

If you live with cystic fibrosis (CF), chances are you already know more about fall risks than most people twice your age. I certainly do, even six years after I had a double-lung transplant.

When people think of CF, they usually focus only on the lungs. Most of this disease is invisible, so people don’t always see the dozens of small, cumulative ways that CF chips away at balance and stability, long before a fall ever happens.

Shortness of breath and weakness are obvious culprits. When your body is working overtime to breathe, your legs and core don’t have much energy left to keep you steady, creating a risk for falls. But with CF, much more is happening beneath the surface.

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Transforming trauma into post-transplant growth

Poor nutrition and digestion issues with CF can lead to low calcium absorption. Oral steroid use, which many of us have relied on at some point, quietly eats away at bone density, leaving us more fracture-prone than we realize.

Tobramycin, one of the intravenous (IV) or inhaled antibiotics most commonly used in CF care, comes with its own risks. In my case, treatment continued despite elevated trough levels, resulting in lasting vestibular and balance damage that still affects my daily life. I’ve found that this topic often isn’t discussed unless those levels are not therapeutic.

Then there’s the medical equipment we use. Supplemental oxygen helped keep me alive before my transplant, but it also tethered me to long tubing along the floor that can easily catch underfoot. IV poles, whether in the hospital or at home, go with us everywhere when we receive treatment — through doorways, around furniture, and into bathrooms. They are another obstacle disguised as a lifeline that becomes a risk for falls.

CF-related diabetes adds its own layer of fall risk, with blood sugar swings that bring shaking, confusion, and weakness. Plus, numbness and tingling can occur in our feet from diabetic cardiovascular damage.

A painful reminder

I was reminded of all of this recently in a way I hadn’t expected. I had a fall that seemed almost innocent at the time. I stumbled because of that tobramycin-related balance issue I mentioned. Shockingly, the fall ended in buckle fractures in two of my ribs. The pain was real, and so was the wake-up call.

Thankfully, my transplanted lungs were unharmed. But the fall, and the weeks of pain that inevitably followed, are a reminder of why I generally move more slowly than my healthy peers, why I need regular rest, and why I take the vitamins and minerals my body requires to stay as strong as possible.

It’s still hard for me to accept these limitations at this stage of life. My body knows exactly what it can and can’t do. My mind, despite everything I’ve been through, still resists that reality some days. I imagine many of you reading this understand that tension all too well.

Accidents happen, even to those of us who are careful, who know our bodies, and who do everything “right.”

Tomorrow is Falls Prevention Awareness Day, part of Falls Prevention Awareness Week, and it’s important that we pay attention to issues like these. Toward that goal, I ask you to walk a little more mindfully, move with a little more care, and give yourself grace for the pace your body needs.

Living with CF already hands us more than enough fall risks to manage, from medications to mobility equipment, to blood sugar swings. We don’t need a preventable fall complication added to the daily fight we’re already battling.

Follow your best care plan. Maintain your muscle strength as much as you’re able. And be gentle with yourself, both when you stumble physically and when your mind takes a little longer to catch up with what your body already knows.

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.