The 6 Doctors You’ll Meet in Your Cystic Fibrosis Journey

You’ll meet legions of doctors throughout your life with cystic fibrosis. You’ll encounter doctors you adore and who will save your life countless times. And you’ll encounter some who make life a nightmare.

Here are six “characters” you’re bound to meet, plus things they’re likely to say, at some point in your journey:

• The Celebrity Researcher: An assistant takes notes while asking questions about your condition. They say they’ll hand over the notes to your doctor and step outside. Two hours later, the doctor comes in, introduces themselves, and asks if you’re from out of town. They assume you’re one of the hundreds who travel to meet them — the famous researcher. This is your 10th time meeting them and you live five minutes away. After a two-minute conversation, they rush off to the next patient. The assistant returns with the doctor’s changes to your plans, plus an opportunity to be part of a trial they’re leading: “Have you signed a research consent form yet? How comfortable are you with needles?”

Quote: “Is a bronchoscopy necessary? No. Would it be interesting to do? Yes.”

• The Paranoid: You casually mention that you had a couple headaches in the past week and your doctor’s eyebrows raise an inch. They quickly schedule a CT of your sinuses, blood work, and an appointment with a neurologist and ENT doctor. “This could be nothing, but what if it’s something? Better safe than sorry, right, buddy?” They begin their thorough 30-minute physical examination before sending you off to radiology. It’ll be a long day.

Quote: “Hmm. Excellent PFTs but I don’t like the sound of that cough. I’m thinking two weeks of IVs on the ward. Thoughts?”

• The Blunt: You don’t know anything about this doctor despite being their patient for years. Your relationship is purely professional. They analytically read your chart in silence for several minutes, flipping back and forth between pages with licked fingers and a frown. Your nervous fidgeting isn’t noticed. Without preamble, they then state to you, matter-of-factly, the good news and the bad news (just “news” to them). “Questions?” You shake your head and they briskly walk out.

Quote: “I’m aware of your enthusiasm due to increased lung function. However, your prognosis is still poor. Let’s talk transplant.”

• The Old-Timer: Stitches instead of glue, ice cubes instead of lidocaine, crushed Creon instead of Relizorb. This doctor prefers to do things the “traditional way,” even if that means discomfort or less efficiency. With many decades of experience, they’ve seen it all… except the new studies and drugs. You tell them you’re interested in new medications and treatments, and they say they’ll look into it. You rarely hear back.

Quote: “Kalydeco? I’ve heard some promising things, but not sure about its FDA status. Stick to your CPT for now.”

• The Med Student: “This is Ken, a medical student shadowing me today. I’ll leave you two at it.” You wear a smile, but plead to the doctor with your eyes to stay. Out walks your doctor and in walks the student armed with a heavy utility belt like Batman’s (stuffed with medical tools they’ll likely never use) but dressed in a freshly-pressed lab coat instead of a black cloak, medical handbook of choice stuffed in the front pocket. The next 10 minutes will be spent telling your “story,” followed by 30 minutes of them asking obvious questions. The appointment might benefit them, but usually not you.

Quote: “I see you’re on enzymes. When did you start those and why?”

• The Softie: “There, there.” The doctor pats your knee with one hand and offers a tissue with the other. Your PFTs just dropped a couple points. You’re chill about it — you’re used to bad news. But having a doctor care so deeply is refreshing, so you dab imaginary tears from your eyes with the Kleenex. “Take some time to yourself. I’ll return shortly.” You help yourself to candy from their desk jar once they walk out.