How CF has taught me the importance of listening to my body

I pushed my mind and body to keep up with those of my peers in my younger years. In high school, despite having cystic fibrosis (CF), I kept up with them socially while also working a part-time job. I graduated, like most of my friends, and then went to nursing school, got married, and became a mother.

While working full-time and caring for my daughter, I continued to push myself to keep up with the other parents I knew. I attended my daughter’s school events and participated in driving pools for summer camps. I threw her birthday parties, which turned into many children sleeping over. I loved every minute.

I kept up with all of my CF medications and treatments throughout it all, while also spending many years as a team leader and fundraising for the Cystic Fibrosis Foundation.

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Now that I’m in my 50s with a double-lung transplant behind me, I look back and wonder how I did it all. In hindsight, I now reflect on my lack of balance and how all of the pushing to keep up with my peers and societal norms usually left me taking two steps forward and one step back, many times resulting in a hospital admission with a pulmonary exacerbation requiring intravenous antibiotic treatment.

Despite my physician’s pleas, I’d generally agree to be admitted for only a few days of rest, given my parenting duties. But I was able to get my intravenous medications into therapeutic range before returning home. Once there, I could complete the medication therapy while maintaining as much normalcy for my daughter as possible.

My life today

With the past 10 years of end-stage CF, transplant, and recovery time, I’m more acutely aware of what my body is communicating to me.

My daughter is now 29 years old. I gained a second chance at life, even if I’m living on borrowed time. And I’ve well surpassed my initial CF prognosis.

With my new lungs, I breathe deep and easy. I have more energy than I’ve had in years. And though my new lungs will never have cystic fibrosis, my body still does. The list of CF-related diagnoses I have is long.

I can breathe, but whether it’s the years of damage or just normal aging — I think it’s a bit of both — my body still gets fatigued.  Malabsorption, vitamin deficiencies, high blood pressure, renal insufficiency, anemia, being immunocompromised, and other symptoms take a toll on the body with CF and transplant. Medications and their side effects can exhaust cognitive processes.

While my breathing and quality of life are highly improved, most of my days still call for me to balance rest and activity. Each day is different. I’ve learned to meet each day with an open mind and without judgment about my body’s daily limits.

Some days can be very productive, and some days demand a great deal of rest, including a possible nap. I’ve learned to give grace to my mind and my body. I have no idea what my body will feel up to doing from one day to the next. And I’ve learned to respect whatever the day brings.

Each day of this life is a gift, no matter the status of your physical health. Not one person on this earth is guaranteed a tomorrow. But from someone who’s on borrowed time, let this please serve as a reminder: If your eyes open in the morning, you are blessed. In the end, all that matters is how we love.

I’m blessed to be here to reflect on all of that.

If I could do it all again, I would’ve spent my earlier years more aware of listening to my body and respecting what it was telling me. Would it have changed anything? I’m not positive. But living with CF, we push and we fight. That’s the norm.

But I urge you to also listen to your body. Balance work, life, and health as much as you can between the rest and fight. The body is such an intricate, amazing, and delicate thing; balancing the physical can affect the mental and visa versa. The body talks to you. Be sure to listen. There’s nothing more important.

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.