Each CF patient’s story is a little different; here’s my version.
I was diagnosed late, at 16. After being sick with a cough and numerous bouts of pneumonia for almost three years, my doctors were ready to throw up their hands. Asthma? No. Allergies? Nope. COPD? Not that, either. It was then that I was taken to Johns Hopkins, as a sort of last resort, for a sweat test.
After a couple hours at the hospital I was sent home with my parents to wait for the results. I don’t know how many excruciating hours later, but we got a call – I had tested positive for cystic fibrosis.
This kind of news is always hard to swallow, but especially at 16. Suddenly I was faced with hours of daily treatments, a handful of pills to swallow, and follow-up appointments with my doctors to figure out my future as a CF patient.
As of now, I don’t have any of the digestive issues (meaning I don’t have to take enzymes with every meal and am able to gain weight) and my lung function has remained at relatively healthy levels (with a few dips here and there).
The hardest part for me has been managing my disease on my own. Incorporating up to two hours a day of chest therapy and medication into my life, after 16 years of nothing at all, has been difficult. Not to mention all the other implications this has on my future (which I’ll talk about more later).
– some form of chest therapy (either the VEST or Acapella) 15-30 minutes, twice a day*
– Pulmozyme (via nebulizer) once per day (5-10 minutes)
– Zithromycin one pill Mon., Wed., Fri.
– Advair one puff, twice a day
– Hypertonic Saline (via nebulizer) once per day (30 minutes)
– Albuterol (as needed)
*Chest therapy is done in order to move the mucus out of my lungs. This is VERY important in preventing infection. And this is probably what I’m worst at doing on a daily basis.
This is a pretty light load in comparison to other CF’ers and could also change depending on how I’m doing health-wise. I’ll update it as it changes.
I also visit the adult CF clinic at Hopkins every three months. If my lung function takes a significant dip without reason, I’ll go more frequently until I get it back up.
Speaking of lung function, you’re probably wondering what I’m talking about. The number my doctors care most about is my FEV1, which is how much air I can push out of my lungs in a certain amount of time (at least, that’s the non-medical way of putting it). A person without CF would fall somewhere in the 85-95% range. I am currently between 70% and 75%. My goal is to get it into the 80s and keep it there. I’ve had it as low as 50% at which point I was hospitalized for a couple of days, hooked up to IVs and sent home to continue them for two weeks. Not fun. So I’d like to keep that from happening again.
I want to stress that this is MY CF story. Every patient has their own. And every patient’s experience is a different one. I’d love to hear yours.
And if you have ANY questions, please ask me.
A lot of other issues (relationships, my daily life, future children, etc.) will be talked about as I write this blog.
I look forward to where this could take me. And thank YOU for reading!