Just because something has been the same way for years and years, doesn’t mean it has to stay that way. From about the age of 13 when I was diagnosed with having Burkholderia Cepacia colonized in my lungs, I went from going in the hospital maybe once in a couple years… to finding myself there once or twice a year. I had a fill-in doctor once who told me I should start getting used to this pattern. She made it seem like there was nothing I could do to stop these hospitalizations. She put that word “can’t” into my head. And stupidly, I listened to her. Not really realizing the severity of such a bacteria at the time, I didn’t change much. I did my treatments, perhaps sometimes haphazardly, I did sports one season a year in middle and high school, and I just kept on doing what I thought was everything I could. But Cepacia is a bitch bacteria… it took a huge toll on me. For the first time, I was coughing up blood, having a blood transfusion, having complications after my many sinus surgeries, feeling generally like crap even when I wasn’t in the hospital. Soon, I found that the bacteria was becoming resistant to many many antibiotics, and the only one it wasn’t resistant to, I was allergic to. Though exacerbations still respond to combinations of antibiotics, it wasn’t enough to keep me out of the hospital twice annually. If the drugs couldn’t fight it fully, I was going to have to help.
I realized I needed to change what I was doing if I wanted to kick cepacia’s ass. I couldn’t just do my treatments when I felt like it, for how long was convenient. I couldn’t skip taking my pills. I couldn’t come home and sit on the couch after school those 3 seasons I wasn’t playing a sport. It all started to click towards my senior year of highschool. And then I got to college, and I found myself needing a PICC line again. Why? Because I was letting myself get exhausted, I was staying out late, partying too much, and letting exercise go by the wayside.
That was 2 years ago last week. November 12, 2009 was the last time I needed IV antibiotics. So what has changed?
1) My exercise has increased ten-fold: Before college, I could barely run a mile. The thought of ever being able to do more, with ease, seemed impossible. But gradually, I began to see how much running and exercise truly, truly helps to strengthen your breathing muscles, buffing up your lungs to fight off anything that comes your way. It also helped me with my energy level, my immunity, and my general sense of well-being.
2) I participated in a study for Cayston for use with cepacia. Rather than having to do two 20 minute treatments of Tobi (an inhaled form of tobramycin) which I wasn’t always compliant with given the time constraints, I now only had to do three 3-5 minute treatments with this great drug. My PFTs stayed stable and even went up some, and I am able to do Cayston now! These are the drugs that are changing things.
3) I catch it early. Rather than denying the fact that I wasn’t feeling well until it gets to the worst point, I am sure to call the doc when there is any sign of sickness coming on. That way, I am able to go on oral antibiotics to “nip it in the bud” before anything gets bad.
4) I discovered hot yoga: Though CFers should be careful with the source of their hot yoga (since some may be stagnant pools of water breeding bacteria), I have found that when provided with the right heat, hot yoga really helps! The deep breathing really opens up my lungs, sweating releases toxins, and the peace of mind it gives me helps me to cope with any negativity I may be feeling. Stretches help to open up my rib cage and back, allowing me to breathe more deeply, filling my lungs with more and more rich oxygen.
5) I chilled out. Having a positive attitude is truly a way to stay healthy. Think about how crappy you feel when you are stressed out and overwhelmed with negative emotion. You get a headache, you feel tired, your heart races, none of it is healthy. The toll stress took on my body often caused me to end up sick. At the first sign of sickness, I would get angry, sad, depressed. I would stop caring about whether I did my treatments, cause it didn’t matter. Now, I am able to remain positive, I am able to adjust to any sadness or frustration I may be feeling, because I know what will happen if I let it get to my body.
6) I stopped taking short cuts. My doctors, my parents, the CF Foundation, have all told me that I must be compliant. I can’t skip a regimen of treatments once or twice a week. I can’t shut my vest off before it’s done, I can’t dump out my medication before I finish inhaling it. I have learned how to manage my time so that treatment time doesn’t become an inconvenience. I try to never miss a day, that probably only happens about once or twice a year depending on the situation. I used to do my sinus rinses haphazardly, going without it for weeks at a time. But now I recognize the role my sinuses have in my health too, if they are clear, my lungs feel better. So I do those rinses religiously too.
7) I set goals for myself and hold myself accountable through blogging and sharing my goals with friends. Whether it is something as simple as drinking 4 water bottles that day, or something as large as training to run 8 miles. I set these goals gradually. When I started out running, I strove for 2 miles… then it increased to a 5k, and soon I was signed up for the Falmouth 7.2 mile Road Race. If I always have something to strive for, I will keep rising towards health. I sign up for road races to ensure that I’ll be ready to run an amount of mileage by a certain day. I set goals to be able to do yoga in hotter conditions and more intense classes.
8) I give myself time to rest and heal. It’s not uncommon for me to take a nap daily. If I sense myself getting too run down, I give myself a day to just relax and get some rest. If I find myself coming down with a cold, I start drinking tons of water, taking Zycam, doing extra sinus rinses, and limiting myself on stressing out with school work or going out.
9) I surround myself with support and love. I have people who I can depend on to talk to when I’m feeling stressed out. This allows me to keep those negative thoughts at bay. Sometimes when you talk to someone you realize that you are being way too over-dramatic, and its a good way to get it off your chest. Through blogging, I am able to allow friends and family to see what I go through, so they are able to better understand when I can’t hang out because I need to take a nap, or when I have to cancel plans to focus on getting better.
10) I am blessed. I fully realize that not everyone has the good fortune of all of these things working out. I’ve been lucky enough not to catch any violent colds or illnesses that I haven’t been able to catch early on. I’ve been lucky enough to be able to afford my medications, to have some of the best doctors in the country at Children’s Hospital Boston, to have a stable life that doesn’t cause extra stressors to get in the way. I have faith in God and I believe that He will only give me what I can handle. I give thanks every day for the blessing of health and I pray a lot 😉