Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just so you can do something with your friends or family?
If you answered YES to any of the above questions, you probably have cystic fibrosis, or are caring for someone who has CF.
Too often do I hear people with CF (and parents) making excuses for not staying compliant with treatments 100% of the time.
“Oh, life got in the way!”
“My son gets a pass on treatments every year for his birthday and Christmas… it’s only twice a year!”
“I just don’t have time.”
“I was too tired.”
“I overslept my alarm.”
“I only do the bare minimum when I’m on vacation.”
Sounds like a bunch of excuses to me.
I take pride in the fact that I NEVER willingly skip or miss a treatment session. I can count the number of times I didn’t do treatments during my college years on ONE HAND, and I only missed them because it was medically necessary to do so – like coughing up blood or something of the sort.
My post-grad life has pretty much been the same story, just a different chapter. I haven’t missed a treatment, unless it was medically necessary to do so, and even then I’ve only ever been told to skip once or twice in the past five and a half years.
I’ve always found ways to do my meds. One of my first jobs included an hour and a half commute each way, so I did my treatments during car rides.
Think about that. Since 2009, I have done my treatments, twice a day, everyday.
It was pretty much the same before then, too.
I attribute my discipline to my parents and the way they raised me. Growing up in THEIR house, and under THEIR rules, I was never allowed to miss a treatment. The only exceptions were early mornings before a surgery or procedure. I think they just felt bad for me then.
That means I was doing my treatments on birthdays, holidays, vacations, sleepovers and everything in between. Granted my treatment sessions looked a little different in the 90s than they do now. The big difference was that the Vest wasn’t a standard of care back then, and I didn’t start using it consistently until the latter half of my high school years, so I wasn’t lugging it all over the place… but that doesn’t mean I skipped airway clearance all together. When I went on a sleepover or had a late night after a little league baseball game, I just managed my treatments however I could, even if it meant that my friends’ parents were overseeing the process.
I simply did what I was told – 30 minutes of the Flutter or my parents did Chest PT on me, plus the rest of my nebs.
Send your kids on a sleepover with the flutter or a PEP device. It’s one significantly easier thing to pack on an overnight!
For my entire childhood, my parents stressed the importance of treatments. We sort of saw them as the gateway to the rest of the day. I couldn’t go to school until I did treatments, and then I couldn’t go to bed at night until I finished them again.
That doesn’t mean I didn’t push back against my parents and their “iron fist” – I definitely did. What 7-year-old wants to sit still for an hour attached to a nebulizer?
To attack that problem, either my mom or my dad would sit next to me and “do” my treatments with me. They’d watch TV with me, or help me with homework. It wasn’t so much treatment time; it was time for all of us to spend together.
My parents always saw treatment time as EXTRA time they got to spend with their kid each day. Time that other families didn’t necessarily have structured into their days.
Beyond that, my parents were not hesitant to weaponize my treatments. They’d say things like, “well if you don’t do them, we’re going to have to go get another PICC line,” or something like that. Mind you, I was terrified of going to the doctor or getting a PICC line placed throughout my childhood and well into my high school years, so I always took those threats very seriously.
I’ll be the first to tell you that I didn’t love when my parents weaponized my treatments, but I’ll admit, it definitely worked, and I wouldn’t be nearly as disciplined with my care today if they didn’t.
I learned to see treatments as an alternative to medical procedures and declining health. From an early age, I associated treatment compliance with fewer trips to the doctor and fewer traumatic PICC line procedures. In my mind, that was all the motivation I needed to do treatments.
As I grew older, I learned that all of that wasn’t necessarily true, but it led me to understand that yes, my overall health is my best motivator.
I can do the things I want to do when I’m healthy, while I can’t do the things I want to do when I’m not.
Cystic fibrosis is unpredictable, yes. BUT remaining compliant with my medications gives me more control over my illness than I would if I didn’t do my treatments. I always say treatments are like a band-aid. They prevent things from getting worse. Every skipped treatment makes that band-aid less and less adhesive until it finally pops off.
When that band-aid rips off, CF turns into a disaster.
I know it’s hard, and I know it’s annoying to sit there (or to sit there with your kid) for hours and hours and hours each week to do treatments, but if you want that band-aid to hold everything together, you have to. Once you lose control of cystic fibrosis, it’s nearly impossible to regain that grip.
CF is a brutal disease. Stop making excuses to skip treatments… you’re only making it worse.