Why the CF patient-doctor relationship is so unique

I learned last week that my pediatric cystic fibrosis (CF) physician had recently passed away. I say pediatric physician, but I was under his care from birth to age 44. I’m now 53. As I reflect on my experiences with him, I realize the CF patient-doctor relationship is unique in many ways.

I was born in 1971, when the life expectancy for those with CF was around 11 years. Adult CF Care Centers weren’t even a thought yet, and medications and treatments were few. The internet didn’t exist yet, so we relied on newspaper clippings gathered by family members and friends to keep abreast of possible medical advances. I still have a folder filled with them.

Back then, CF doctors fought alongside us. Don’t get me wrong, they still do, but several decades ago, without all the research that’s happening today, it felt like they stood next to us on the front lines. They were fighting a battle for children whose lives were being ravaged by a deadly disease, without much of the knowledge and resources we have now. We weren’t armed for this enemy. There wasn’t a larger CF “team.”

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Uncharted territory

My mom was encouraged to get me involved in sports and keep me as active as possible as a way to help clear mucus and keep my lungs strong. I continued to surpass the slowly increasing life expectancy, and in my early 20s, I completed nursing school, got married, and had a baby. That wasn’t the norm for CF patients back then, by any means. I was in uncharted territory, and reaching those milestones brought both fear and excitement.

The backbone of CF care, which had been drilled into me over the years, was consuming plenty of calories, fluids, and salt and doing chest physiotherapy. I never forgot this, but my teenage years brought an invincibility mindset. I recall much pleading and negotiating from both me and my doctor at clinic visits.

My inpatient hospitalizations didn’t start until I was in my early 20s. Each time I was admitted, my doctor would meet me at the hospital no matter the time, day or night. The standard in CF care was to see your doctor every three months, and I’d done so since birth.

I can’t explain the feeling of being admitted while feeling unwell and being able to fall into the hospital bed, trusting that my physician was taking care of everything as if I were a member of his family. Having such a dedicated provider who knows you well, inside and out, isn’t typical for most patient-doctor relationships today.

Because I had a nursing career and was raising a child, I often negotiated for shorter inpatient hospitalizations. I wanted to finish my IV treatments at home so I wouldn’t spend too much time apart from my daughter. Though my requests weren’t always met with support from hospital staff, many times they agreed to discharge me with close home-care monitoring.

Give and take

I transitioned to an adult CF Care Center when I was 44 years old. My current team is absolutely amazing. I’m beyond grateful to have access to such amazing care. There are far more treatments available now than when I was growing up. Regardless of these changes, all of my CF patient-doctor relationships have always involved some give and take.

CF is a very individual disease. Different gene mutations result in an array of symptoms and disease expressions; we don’t all fit into the same box. Treatments affect us differently, and numerous factors — age, personality, location, insurance coverage, financial status, support network, and so on — influence the care we receive. These variations make it difficult to manage CF — not just for patients, but for our doctors, too.

It’s important we find a physician we feel comfortable with and who supports effective communication. A mutual understanding is crucial to finding a balance between medical care and quality of life.

I’m so thankful for all the doctors who show up every day to fight alongside those of us with CF.

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.