Breathe Easy // My life as a CF fighter + SLP
by Veronica Smitley, M.A.. CCC-SLP
I’m Veronica, and I am a speech-language pathologist (SLP) living in Cleveland, OH providing services to students in Minnesota and Missouri [+ Alaska on occasion].
SLP is just one title I hold; I’m also a daughter, sister, aunt, cousin, dog-mom, and most importantly, fighter.
This is the story of my colliding worlds that made two of those titles a little more manageable. Plus, telling my story is a way for me to bring awareness to a disease that really needs more light.
CF // An Overview
More than 30,000 Americans are diagnosed with cystic fibrosis, that's 70,000 worldwide.
CF is a recessive genetic disease, meaning two people who are carriers of the defective gene have a 25% chance that their child will be born with the disease. The defective gene that causes CF was discovered in 1989, and over 1800 variations of the gene are known to exist now.
In other words, each person diagnosed has a different genotype, resulting in different presentations of the disease. My genotype, double F508Delta, is known as the “classic.” The term is used because over 90% of the CF population has the same genotype. However, that does not mean we all present and progress in our disease path the same way.
As my doctor always says, “If you’ve seen one patient with CF, you’ve seen one patient with CF.” (Sound familiar to my friends in the SpEd field?)
CF // My Journey
I was diagnosed when I was 8 months old after having contracted RSV and not being able to recover. Obviously, I don’t remember much, but I know my family was quick to react and get me in with a team that was at the head of cutting edge research at Rainbow Babies & Children’s Hospital.
For the past 27 years, I have been under the care of the CF team at Rainbow, and they are the reason I am here today. You see, when I was first diagnosed, the life expectancy for a child with CF was 20 years old. Since then, a lot of discoveries have been made to develop life-saving drugs and the life expectancy is now 40 years old.
Throughout my childhood, I was able to stay fairly healthy.
I managed to stay out of the hospital until I was 16 years old. After that first stay, I began to average 1-2 stays per year in order to hit those infections with more potent drugs. Each hospital stay and clinic visit came with new symptoms and new medications and/or treatments; add a pill here or an aerosol there.
It doesn’t seem like much in the moment, but let me tell you what it all adds up to.
My morning routine looks something like this:
1 pill and insulin shot
45 minutes to an hour of airway clearance - including 5 aerosols, percussion vest, and handheld to increase clearing cough-inhaled corticosteroids
breakfast accompanied by a handful of pills
People ask me why I get up so early to get ready for my day. This is why.
At the end of the day I turn around and do it again. And this is all during my healthy times. I don’t mind the time constraints now, because it gives me time to prep my mind for the day or to wind down before bed.
Fighter + SLP
As you may imagine, holding a full time job as an SLP is difficult for someone doing 2-3 hours of treatments a day, who may end up in the hospital from contracting a common cold.
I read recently that a healthy adult with CF will spend an average of 4 months’ worth of full time work per year just completing treatments. I made it through my six years of college because I had professors who were willing to accommodate my absences and would send lectures for me to follow along from the hospital.
In the real world, the working world, that is not really an easy option.
Fresh out of school, I was unfortunate enough to have a boss that was less than understanding. I was overworked, constantly sick, and slacking on treatments to work the additional hours I was assigned.
After I left that job, I worked in an outpatient hospital setting. I figured I could wear a mask with less chance of scaring my patients, and my boss was much more understanding. Unfortunately, I still had to use PTO or take unpaid time when I need to be admitted to the hospital. After a year, I started to look for other work.
Enter DotCom Therapy.
I had only ever heard of teletherapy and it was but a dream for me.
Work from home, have a flexible schedule, ditch the commute, avoid germs – perfect.
I applied in the fall for an open full-time SLP position. I was instantly drawn to the idea that DCT valued work-life balance. Other companies claim they hold that value high, but DotCom followed through.
In my journey at DotCom Therapy, I have come to realize just how invaluable the telehealth platform is. I can work full time in my field (SLP) and still manage my treatment regimen (fighter) while also avoiding the germs that inevitably circulate through the schools.
For those living with chronic progressive disease, it is so important to do what you love and be truly happy with the time you have.
With DCT, I am able to do that. I am able to travel to see family and take my work with me. I even worked from my hospital room this past winter, once I was feeling well enough. The past few years have been a difficult transition period for me in my health journey, but being a teletherapist has allowed me to cope with the changes while still keeping a part of my life on track.
I am grateful for the chance to merge my titles of speech-language pathologist and fighter to work harmoniously.
I am grateful to work with an amazing team of therapists who are always willing to help and guide.
I am grateful to be a part of such an innovative movement in the world of telehealth.
Even with my less-than-stellar CF lungs, I breathe a little easier knowing my life has balance.