The unique daily thoughts of someone living with cystic fibrosis

Many of the thoughts that cross my mind daily are specific to cystic fibrosis (CF). Recently, I’ve recognized that they’re not things that most people, including my family and healthy peers, have to think about.

I’m not upset that the following topics are frequently on my mind. It’s just the reality of living with CF.

Monitoring my body temperature

As soon as I wake up, I wonder what my body temperature is and measure it before I get out of bed.

People with CF are prone to serious lung infections, which can damage the airways. Since my double-lung transplant in 2020, I’ve had to take anti-rejection medications, including prednisone, every 12 hours to prevent my body from attacking my new lungs. However, that essentially shuts down my immune system, so my body is unable to fight infections effectively.

Taking my temperature every morning tells me if there’s been even a slight change in my basal body temperature, which could indicate an infection. I doubt most healthy people wake up wondering what their temperature is.

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Avoiding constipation

I have distal intestinal obstruction syndrome, so if I don’t add the laxative Miralax to my coffee every morning, I’ll suffer for days with constipation.

At birth I had meconium ileus, which is a bowel obstruction that occurs in newborns. It’s caused by thick and sticky meconium — a baby’s first stool — and can be a sign of CF. The obstruction was surgically repaired on my second day of life, and I remained in the neonatal intensive care unit for a few weeks, during which time I was diagnosed with CF. Since then, I’ve been prone to intestinal blockages.

I have found that a daily regimen of Miralax keeps me regular. Most people probably don’t think about adding laxatives to their morning coffee.

Drinking enough water

Whenever I drink water, I make sure to take three sips, as I’ve always been prone to dehydration. Before, I’d routinely get run down and dehydrated around May or June, and end up with a pulmonary exacerbation. That would result in hospitalizations or home IV regimens.

My previous CF physician once gave me a tip: Whenever I take a sip of water, I should intentionally take two more. I still remember that every time I drink water. Now that I’m post-transplant and have chronic kidney disease, drinking eight bottles of spring water a day is essential for me. That can be difficult to achieve, but doing so makes a difference.

Hydration seems to be a priority in our society, given the popularity of huge water bottles, but does everyone think about taking multiple sips to avoid ending up in the hospital?

Calculating enzymes

I have pancreatic insufficiency, a common gastrointestinal complication of CF. It means that my pancreas doesn’t produce enough digestive enzymes, causing my body to have trouble absorbing fats and vitamins A, D, E, and K. No matter what I eat, my body won’t be able to absorb the nutrients properly without synthetic pancreatic enzymes.

I’m always calculating how many enzymes I’ll need to swallow with my food so my body can digest and absorb what I’m eating. That’s not something most people have to worry about.

Eating enough calories

Because my body has trouble absorbing fats, gaining weight can be a challenge. And with advanced lung disease, the heart has to pump faster than normal to compensate for the lungs not working effectively, which burns more calories. For these reasons, caloric intake is an important part of CF care.

When I was growing up in the 1970s and ’80s, doctors would encourage me to eat foods high in calories and fat, such as fast food and milkshakes. More recently, the focus has shifted to eating nuts, salmon, avocados, and other, healthier fats.

In our society, most people are watching their caloric intake to minimize calories and fat — not the reverse.

What daily thoughts do you have that are specific to someone living with CF? Please share in the comments below.

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.