You Know You Have Cystic Fibrosis When…

Ah, lists. We love to make them, don’t we? We also love to read them.

“People Magazine’s 100 Most Beautiful People”

“Ten Cool Cat Tricks”

“Five Important Questions to Ask Your Repairman”

Some lists are informative and others are entertaining. I’ve spent many years as a Cystic Fibrosis patient, and thought I’d share some stuff I’ve picked up along the way.

You know you have CF when…

  • Your friends and family can find you in a crowd or department store just by listening for your cough.
  • At the top of your Christmas list is a “cute, custom johnny coat” for the hospital.
Who says hospital patients can't look cute?

Who says hospital patients can’t look cute?

  • You personally own diagnostic medical equipment so that you can monitor and report your vital signs to your doctor. I own a Pulse Oximeter, Handheld Sprirometer, Blood Pressure equipment, and a digital thermometer. That way, I can track any changes and report them to my doctors.
A Pulse Oximeter measures the level of Oxygen in your blood.

A Pulse Oximeter measures the level of Oxygen in your blood.

  • You can swallow handfuls of pills at a time. When you take between 50 and 60 pills per day, you have to learn to get them done quickly.
In a single day, I take between 50 and 75 pills (medications and vitamins) per day. This handful of enzymes are for one meal.

This handful of enzymes are for one meal.

  • You learned how to do “shots” when you were eight years old, chasing a nasty-tasting medication with a swig of Orange Juice, after realizing that MIXING the medication into a glass of OJ just prolonged the gag-worthy process.
A medication that I dubbed "Puke-o-Myst," because it smelled and tasted like rotten eggs. Usually used for the lungs, I used it to help clear intestinal obstructions.

A medication that I dubbed “Puke-o-Myst,” because it smelled and tasted like rotten eggs. Usually used for the lungs, I used it to help clear intestinal obstructions.

  • You’ve forever associated Orange Juice with all nasty-tasting medications.
I have to do mental gymnastics to forget the association with those icky medications!!

I have to do mental gymnastics to forget the association with those icky medications!!

  • Your medicine cabinet is bigger than your clothes closet. The cabinet below has just my “spares” and none of my equipment. I have a “current” box that I keep with me, with all of my 12-15 medications plus supplements I take each day.
So. Many. Bottles.

So. Many. Bottles.

  • You point out errors in medical shows and movies. I guess the producers think that providing patients with eye candy will make up for their mistakes. but Hollywood gets so much wrong!
I guess the producers think that providing patients with eye candy will make up for their mistakes.

The melodramas that just don’t get things right…

  • Your doctors no longer bother hiding their cell phone numbers on caller ID when they call you back. One of my doctors is a little, um, scary? He’s really assertive and we often go head-to-head, but I know he has my best interests at heart. Still, when the phone rings and I see his number, I know it’s important!
When this number calls me, I know it's important!

When this number calls me, I know it’s important!

  • There is no such thing as “packing light.” You are always ready with several days’ worth of medications should you get stuck somewhere.
Several days' worth of some of my most vital medications.

Several days’ worth of some of my most vital medications.

Diabetes supplies.

Diabetes supplies.

Cough drops for tickles and hard candy for low blood sugar levels.

Cough drops for tickles and hard candy for low blood sugar levels.

  • In public, people tend to give you space – lots of space – when they hear you cough. In the hospital, it means I get a private room. In public, it means people keep their distance, which is great because they are keeping THEIR germs to themselves, too!
In the hospital, it means I get a private room. In public, it means people keep their distance, which is great because they are keeping THEIR germs to themselves, too!

One more step and you will spontaneously combust!

  • In high school, your friends knew exactly where and how (cupped hands!) to hit you on the back during a coughing fit. It usually happened at the lunch table, when they made me laugh, which sent me into coughing fits. Good times, good times!
How to position your hand for manual Chest Physiotherapy.

How to place your hand for manual Chest Physiotherapy.

  • Getting 10 vials of blood drawn at one time is no big deal. Well, as long as they can find a vein. Oops, they did it again!
It's tough to get blood out of a stone.

It’s tough to get blood out of a stone.

  • You instruct phlebotomists/nurses taking blood or inserting an IV on the best way to do the procedure, and how not to do it. They don’t always rarely never listen.
Day five. I've shown this photo to medical personnel and even they cringe when they see this!!

Five days after 2 failed attempts at placing a PICC Line. I’ve shown this photo to medical personnel and even they cringe when they see this!!

  • People come to you for health advice. You’re well-versed in medical acronyms, diagnostic testing, and levels of care, and can help relieve a lot of stress just by deciphering medical information into layman’s terms.
You tend to pick up a few things during four decades of experience as a Professional Patient.

You tend to pick up a few things during four decades of experience as a Professional Patient.

  • The workers at the hospital cafeteria are so used to seeing your spouse that they think he/she is a doctor and they give him an employee discount.

——–

I hope that you’ve enjoyed this journey. Being able to find the positives in tough situations is a learned skill.

Sometimes people ask me “how do you do it?” I tell them that I really have no other choice – either deal with it or don’t. There may come a time when I don’t feel so much like fighting. Heck, every one of us will face something huge in our lives that will need us to choose. For now, I chose to keep going, and while I do, I’ll be making a lot of lemonade!

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