Janet's was the very first blog I ever read. After stumbling upon one of her always clever posts, I was hooked. And immediately read every archived post she’d ever written. When Janet asked me to write a guest post, there was no hesitation. Below is a little piece of my journey, and my hope is that it gives a face to the disease, rather than just a list of symptoms.
Each CF patient’s story is a little different; here’s my version.
I was diagnosed late, at 16 – most CF patients are diagnosed by the age of three. 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.
Luckily, I have a more mild case. 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). But cystic fibrosis can be unpredictable, so the “what ifs” are always hanging over my head.
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.
- 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 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.
The 10 years since my diagnosis have been hard. And I’m still a long way from fully dealing with what it means to have this disease. Completing the daily treatments I have to do continues to be a struggle, even though they will add years to my life.
I started my blogs in hopes that it will help hold me accountable. Because when it comes down to it, I’m the only one that can keep myself healthy. I can decide to take my medication or not. I can do my chest therapy twice a day, or I can half-ass it. I can go to the gym, or I can sit at home and watch TV.
CF is a tricky disease. We carry bacteria that are only harmful to other CF patients, meaning that support groups (aside from ones online) are nonexistent. If I find out someone has CF, I have to keep my distance. It can be very lonely.
Luckily I have an amazing boyfriend, wonderful family, and fabulous friends who support me in whatever way I need. Whether that’s a shoulder to cry on, letting me vent my frustrations, or gathering people to participate in a fundraiser. But they can only do so much. Like I said before, the rest is up to me.
The other reason I wanted to make CF the focus of my blog is because it’s such an unknown disease. And awareness is key in finding a cure.
The first memory I have where I realized how little people knew about this disease was at a Martina McBride concert. It was a benefit for CF, and the first one I’d attended since my diagnosis. Seated next to me was a mother and her young son. At one point he turned to her and asked, “Mommy, what’s cystic fibrosis?” To which she replied, “I’m not sure, I think it’s a muscular disease.”
It’s because of experiences like that that I want to educate people about CF. Especially because my belief is that people would be much more willing to support a cause that they understand. One where they know where their money is going (research), who it’s going to help (CF patients), and what it’s for (to make CF stand for “cure found”).
I am so thankful for people like Janet who allow me to share my story – with each person that learns more about cystic fibrosis, the chance of finding a cure increases. So thank you, from the bottom of my heart, for taking the time to read this. If you have any questions please feel free to email me at FromAtoPink at gmail dot com.
A huge thank you to Katharine for sharing her story. And, hey! There are many ways that you can help find a cure for CF! It's good to give.