My Journey to Compliance

Guest blog by Aubrey Bean

I want to start by first thanking Ronnie for this amazing and inspiring blog, and also for the opportunity to share my story.

My name is Aubrey, and I am a 24 year old from a little town in NH. I was diagnosed with Cystic Fibrosis when I was six days old, after I had surgery for meconium ileus. I was a healthy and (very) lucky kid, always having high PFTs and never having to "work" for them. I started enzymes when I was born, but didn't start any nebs or the vest until middle school. I had IVs when I was 8, 16, and 19, and those PICCs weren't because I was sick, but because my numbers happened to slip slightly below my 100% baseline. I spent my first 20 or so years of life being blissfully unaware of the possible repercussions of this disease. However, throughout my 4 years away at college, when treatments happened when it was convenient, and exercise happened never, I slowly saw my lung function decline to 85%. Every appointment I repeatedly promised myself that I would get it back up “eventually.”

Finally “eventually” had to happen now, when in my last semester of college the noncompliance and hatred for any kind of exercise finally caught up to me. In May 2011 when I was a college senior, 2 weeks before graduation, I saw numbers that stunned me, and even caused me to shed a few tears. I blew a 61%. I was sent into the hospital shortly after I graduated college, and was even more stunned by the fact that after 4 weeks of IV antibiotics my numbers improved only slightly. To make a long and pretty complicated story short, I spent the next 7 months in and out of the hospital, including close to a week in the ICU with pneumonia, unable to get out of bed. I spent those months battling a few different medication allergies, new bacteria, and even a fungal infection in my lungs. Finally in January, after my third case of pneumonia in less than 6 months, at 34% lung function, I made the difficult but necessary decision to quit my job, one I had been offered in October. I hated that I had to quit my job. I hated the fact that I lost 50% of my lung function in just one year. But more than that, I was scared that it would never come up again.

  

During my hospital stay in January 2012, I constantly heard the voices of multiple doctors telling me that pneumonia causes permanent damage and they weren’t sure how much lung function I would be able to recover. I even had one of them tell me I should shoot for 50% lung function, but not much higher. I left the hospital hearing those words over and over in my head. Their voices became an echo, at first scaring me, but suddenly I turned it around, and those words became my motivation. I realized that all I could do was try. I thought even if these doctors are right, I at least want to make a strong effort to prove to them and most importantly to myself, that no matter how much CF knocked me down in the past year, I was going to stand up and try my best to come back. So that’s what I did. I started to exercise (with the help of RSBR and other awesome CF blogs!) and made a vow to never skip a treatment, unless it was absolutely necessary.

I started slowly, walking on the treadmill until my lungs started to ache. My walks started getting longer, and feeling a little better. After a few weeks of just walking, I started to run, (slowly) and soon I was running very small lengths at a time. It was hard and extremely challenging. A couple times I almost made myself sick I coughed so hard, and other times I spent my ride home from the gym crying, wondering why I couldn't do more than walk. I was frustrated more than satisfied, and I was in pain more than comfortable, but I wasn't giving up! I continued to run more, and exercising became a lot easier and more pleasant within a few months. I kept at it about 5 times per week, and it was all worth it when in August of 2012 my hard work paid off and I ran a mile for the first time. Ever. Today, it is still worth it.

Sitting here writing this today, I'm reliving my 2011-2012 journeys and I realize just how different my life is, and how different my lungs are! I got another job in November, and have not been sick once. Also, last week I went to clinic, and I blew FVC 80 FEV1 65 (And I’m shooting for higher next time!), over 30% higher than last February. My PFTs increased by that thirty percent because of hard work, patience, a lot of faith, and a lot of treatment compliance. In the last year, I have missed one treatment (for my sister's wedding!!) and last week I ran 2.5 miles on the treadmill.

My last hospitalization was January 2012. Coincidence? I don’t think so!

In the last few years, CF has taught me so much about myself and life in general. I've learned life lessons I never would have learned otherwise. I have also learned that as much as I am being pulled in so many directions every day, I know that treatment compliance and exercise are the most important aspects of my life to never let go of, and I am very grateful for that lesson. I've also learned that although CF is tough, and may knock me down sometimes, I have proved to myself that I am tougher and I will always try my hardest to fight back.

Bio: My name is Aubrey and I am 24 years old. I live in southern New Hampshire, and have been seen by doctors in Boston, MA my whole life. I graduated from Merrimack College in North Andover, MA in 2011, with a degree in Spanish. I am currently employed at a bank in NH and I really like it! In my free time I like hanging out with friends, family, and my dog, singing, dancing, shopping, and of course working out and trying to stay as healthy as possible!!

Note from Ronnie: I can't thank Aubrey enough for sharing her story with us. We're seeing this type of story happen more and more, so I hope that it's a huge encouragement for the community. Maybe it can also serve as a wake-up call to those in college who have put their health on the back burner. People ask me all the time where they can find motivation - well, here it is!! The proof is in the pudding so they say. Thanks again cyster!!

Interested in contributing a guest blog about you and the fact that you kick some CF booty?!? Email me your blog idea at ronnie@cysticlife.org.