People with Cystic Fibrosis tend to spend a lot of time in doctors’ offices, hospitals, and various medical settings.
Over the course of our lives, we may have taken hundreds of blood tests, scans (Xryas, Ultrasounds, MRIs) and other random medical tests. We become familiar with other diseases, conditions and diagnoses that can result from either having CF, or simply having a human body that can fail like every other person in the world.
Since I believe in making lemonade out of lemons, I thought I’d share some benefits or mad skills I’ve picked up over the past 40 years living with CF.
Ten Things I’ve Learned While Living With CF
10. I know the medical lingo.
I was watching the old 1970s TV show, “Emergency!” – you know, the one with the “cute” paramedics. In every episode, one of the paramedics called the doctor at the hospital using a giant walkie-talkie with an antennae longer than the empire state building.
In every scene, the doctor would furrow his brow, summoning his medical training to his frontal cortex (the part of the brain that solves problems), and order the paramedic to administer “D5W, stat!” I can imagine what the 1972 audience felt while watching this – quite serious medical stuff!!
So what is “D5w”? It’s 5 mg of Dextrose (sugar) + water. You, know, the bag of sugar water that hangs from IV poles.
9. I can tell when a TV show or movie gets it right.
Production companies spend millions of dollars creating films and TV shows, yet they often fail to give accurate information. It shouldn’t matter because it’s just entertainment, right? Well, no. Mistakes like these can cause damage when it’s the only information a person has about a particular condition.
Remember the “diabetes” scene during “Steel Magnolias”? Julia Roberts’ character, Shelby, is a Type I diabetic, and in one of the scenes, her blood sugar crashes. It was a dramatic moment – all ofthe women standing around, wringing their hands while Sally Fields tries to pry Julia’s mouth open to give her some juice.
I’ve spoken to many people with Diabetes, and every person complained about over-dramatization of the scene. When my blood glucose drops, everything seems to collapse around me like I’m in a tunnel, slowing down. My ability to think, speak, and make deliberate movements decreases. I certainly don’t have the strength or brain power to aggressively fight someone trying to help me. The one thing the writers DID get right is that a crashing diabetic needs sugar, and drinking liquid provides quicker relief than eating something (but if you don’t have liquid, food is fine).
8. Everyone calls upon my expertise when they’re sick.
As a medical patient, I’ve accumulated a wealth of knowledge over decades of doctor visits, tests, treatments and the search for a diagnosis. CF is a complex disease, affecting just about every part of my body in some way. In addition, I am not immune to “regular” health conditions, especially as I age.
Family members have called me with questions about asthma, pneumonia, stomach issues, antibiotics, and specific medications and their side effects. I’m able to help them better explain their symptoms, so that they can make the most out of the small amount of face time with the doctor. My first-hand experience and understanding of the body’s systems also helps me convince someone when they need medical care, which is helpful when you come from a long line of stubborn people!
7. I’m an expert at packing.
I recently had to go away for the night and the day before, I compiled a list of everything I needed. Aside from clothing and toiletries, the rest of my list consisted of prescription medications, medical devices and at least a dozen different OTC medications for every possible problem. One important thing that I’ve learned is to pack at least one extra day’s amount of daily medication should I get stuck, and several days’ worth of medications that I literally cannot live without, such as my Enzymes.
Two great finds that help me travel (or just leave the house for a few hours) with my meds:
- CVS medication bags – small , clear, plastic ziplock baggies. You can write the name and dosage of your medication, and/or slide in one of the prescription labels (you can ask your pharmacist for one if they don’t always give it to you). Check your local and state laws about carrying medications.
- I bought two of these tins from the Dollar Bins at Target, and put my little baggies in them. It keeps them safe, dry, and takes up minimal space in my purse.
6. The person I’m with will never lose track of me.
People with CF have a distinctive cough – powerful, junky, wheezy, and noisy. It’s our calling card. When I was a kid, if I had wandered off in a store, my mother always found me by listening for my cough. My husband does it now, too. My own natural GPS!
How often have any of you with CF heard someone cough and wonder, do they have it, too? The waiting room at the Pulmonologist’s office is a great place to play the game, “Who has CF?”
5. Many CF patients tend to maintain their “youthful” appearance.
So many women with CF who I’ve spoken to have said that people often think that they are much younger than what the calendar says. People sometimes say that I’m “lucky” and that I will appreciate it when I’m older, but sometimes, I want to feel like I’ve earned the respect of someone my age.
Years ago, my husband and I were flying back home after visiting my in-laws years ago. It just happened to be on my birthday. Due to a late connecting flight, we had to sit in the front row of the plane (it was a puddle jumper without assigned seats), which I didn’t mind because I like having extra room around me. As I was putting on my seat belt, the flight attendant tapped me on the shoulder and said “I’m sorry, you’ll have to move seats with someone. You must be at least 14 to sit in an Exit row.”
The problem? It was my 24th birthday.
4. My cough keeps strangers at a distance.
Aside from the fear of cross infection, I also get really nervous in crowds. Elevators and airplanes are my own personal hell.
When I’m hospitalized, I usually get my own room. The bugs I colonize in my lungs are resistant to many medications, and therefore could be dangerous to someone with a compromised immune system. The downside to all of that is that I can’t get exercise by wandering the halls and walking up and down stairs, I can’t mingle in public areas, and I can’t play with the Therapy Dog when he visits.
3. I have a natural immunity to Cholera!
Or Typhoid. Or Tuberculosis. Okay, at different times in history, science has theorized that the CF gene provides protection against one of these three disease. The most recent theory suggests that CF protects carriers from TB because TB needs a certain protein to grow – a protein that the CF gene lacks.
2. I know of a 1001 ways to pass the time.
Well, maybe not that many, but I’ve learned many tricks to keep me busy while waiting. About 10 or 12 years ago, I had a huge kidney stone. The pain was excruciating. I knew that it was a kidney stone because I had experienced them in the past. I had spent eight or nine hours between sitting in the ER waiting room and lying on a gurney in the hallway before a nurse took my medical history.
It was while waiting for the scan that I came up with “the alphabet game.” I went through dozens of topics, beginning with “things you find in a hospital” – Appendicitis. Babies. Crutches. I continued to play the game, and I think that I was on the topic of “Cities” when someone showed up to bring me to the ultrasound room. I trudged along behind her, in pain, dehydrated, and exhausted.
The scan took just a few minutes, after which the ultrasound tech stepped out of the room for a minute. She rushed back in with a wheelchair. “Okay, hun, you’re all set. Take a seat and I’ll bring you into a room.”
A room?? I was so excited that I lost my place in the alphabet. Suddenly, everything was a flurry. Within seconds, she wheeled me into a private room, followed by two nurses. I stood up from the wheelchair, and they guided me up on the gurney.
“I am SO sorry, hun. You have a 9 millimeter kidney stone blocking your right kidney,” one nurse said, trying to place an IV. “We’re going to give you fluids and pain medicine. “You can have as much of this as you want, hun. I am so sorry you had to wait so long.”
1. I still keep a stuffed animal on my bed, and that’s okay.
I introduce to you, Douglas, my black lab.
At home, I often have nausea and pain due to my Pancreatitis and other GI issues. Holding Douglas against my belly helps relieve some of the discomfort.
Douglas also helps cushion my arm when I have an IV, especially when it’s in a weird place, like under my wrist, or if I have to hold/rest my arm a certain way to avoid smashing it or crushing the line. He also keeps my arm feeling comfortable while infusing IV medication hours and hours a day.
During my last hospitalization, I infused for 18 hours a day. I also had a lot of problems with my double lumen PICC line – nearly every day, one or both of the lines would clog, and the process of unplugging them required me to keep my arm perfectly still for hours. All I had to do was flip Douglas over on his back and rest my arm on his belly. Every nurse and doctor who came in first laughed, then remarked that it was a really good idea.
I remember one day, the floor’s nurse manager stopped by to see how I was doing, and asked me about the fluffy dog on my bed. I explained to her how it helps me find a comfortable position for my IV arm, is therapeutic when having stomach pain, and is a great comfort when I need a hug.
She was so impressed with Douglas’s usefulness that she went online and purchased a dozen “Douglas” dogs in various colors, plus a few other cushy animals, to give to patients while they are on her floor. I am so happy that I was able to inspire someone who spends their entire life taking care of sick people, all because I had worn out my old stuffed animal, “Cuddles.”
Just Add Sugar
Having CF can really suck, so I look for anything that I can do to make the most of my experiences. I hope that this inspires you to think about the good around you. We each have the power to sweeten even the most sour moments in our lives.
What have you learned or gained as a result of living with Cystic Fibrosis? Share your thoughts below in the comment section.