Saturday, March 26, 2011

Want to live a "normal" life? Inquire within.

Guest Post by Ayn Learn

My name is Ayn Learn. I’m twenty-two years old, and was diagnosed at birth with DeltaF508.

Ronnie has asked me to share my story about my college experience with CF. So here goes...

First, a little background. I was a sick baby. I was cut out early and kept in the hospital for five weeks because of CF complications. A meconium ileus, massive mucus and water in the lungs, and a collapsed lung. The doctor’s told my parents that it was a miracle I was alive and that I wouldn’t make it to adolescence.

When I was four, my father started me running. My father is a distance runner and naturally he passed his passion on to his kids. Every morning my dad and I would go on a run, rain or shine. I clocked in serious mileage as a child and adolescent, and by age eight I was averaging 40 -50 miles a week, which is an average of about 6 miles a day. My lungs grew strong. I had amazing lungs growing up, and because of that, I never really thought about CF. The CF doctors would tell me that I had the best lungs of a CF child they had ever seen.

I grew up thinking that my CF was only a mild case. Even though my parents told me that the running was the key to my health, because I had never experienced anything too severe, I didn’t believe them. I didn’t realize that it was running an hour to two every day that was saving my lungs, and my life.

When I was eleven CF began to fight back harder, but I kept running and was able to battle it. I did my nebs everyday and I ran every single day. Combined with yearly piccs, I was able to stay ahead of the game and CF was only an “occasional” disruption to my normal life.

I ran cross country and track and field throughout high school. I had my share of piccs and hospital stays, battling pseudomonas strains all the time, but I never really felt unhealthy. When I graduated, my lung function was in between 77- 86%.

I went off to college and joined my schools cross country team. This was a time for freedom.

I was living in a coed dorm with my best friend, away from home for the first time. I didn’t think I needed to make CF a priority. It was embarrassing, too, doing nebs in front of my roommate and our friends in the dorm. I didn’t want to be labeled as ‘the sick girl.’ So I lost interest in taking care of myself. I was really relaxed with my treatments and did them maybe every other day at best. I did not make my health a priority at all.

Halfway through my first quarter I started feeling bad, and I began to experience extreme difficulty in running. Every step I took it felt like I was drowning. Running became hard and unpleasant.

A few weeks after that, I coughed up blood for the first time. This was terrifying. I had been coughing into tissues all night in the dorm room, and when I woke up I saw that those tissues were filled with nothing but bright red blood. I rushed to bathroom and coughed up mouthfuls of blood, probably at least half a cup total. I had never been so freaked out. I made an appointment with the CF clinic and proceeded to do the stupidest thing I could have done in this situation.

I quit running.

I can honestly say that that was the biggest mistake of my life.

The Biggest. Mistake. OF MY LIFE.

The CF appointment shortly after revealed pseudomonas and a decline in lung function to about the low 60s. I did a picc line while living in the dorms and my roommate and friends watched me ‘shoot up.’ For someone who didn’t want to appear different or sick, I wasn’t too happy.

Sadly, though, this wasn’t the wake up call that I needed.

Once I finished 3 weeks of treatment, I went back to my old habits of inconsistency. I wasn’t running now, and I wasn’t doing the vest (I didn’t have one at the time, never having need for it before because of all the running). I wasn’t doing my treatments consistently. I pretty much became a couch potato, my only exercise being the walk to my classes.

I still believed that my CF was “mild” and that I wasn’t like all the others who would get sick and die if they didn’t take care of themselves. I wanted so badly just to be normal. But I wasn’t. I continued to need more picc lines and soon I couldn’t even make it three months without coughing up blood and needing another picc.

I watched my lung function decline each month. In a year and a half, I watched my lung function drop from about 70% to 47% ... Simply because I stopped running and I wasn’t consistent with my treatments.

My CF clinic stopped treating adults and sent me away to a new clinic two hours away. After this, I felt abandoned. I felt like everyone was giving up on me and now, when I would try to do my nebulizers every day, it seemed to be too late. Nothing was working and my lung function continued to decline. I was sitting in the hospital with yet another picc, when I realized that things needed to change or I was going to die. I finally heard what my parents had been yelling to me over and over, what I had been too stubborn to hear:

That it is running that keeps you healthy. That it’s doing your treatments every day that keeps you alive.

It was both a horrible and wonderful moment. In that moment I realized that all of this was my fault. Sure, having CF wasn’t my fault. But not taking care of myself, slacking off on treatments, and refusing to exercise – that was all on me. But it was also wonderful, because for so long I had felt helpless; I had felt that CF was winning and that there was nothing I could do to stop it. Suddenly, I had the upper hand in this battle, and I knew the secret to winning this CF war. Nebulizers and medicine are only as affective as what they can reach. If your lungs are plugged up with mucus, the medicine isn’t go to be as helpful. If your lungs are too plugged up with mucus, medicine will only help so much. You have to get the junk out of your lungs. Airway clearance, in my case running, is the most important weapon we have against CF.

My first day off the picc I went for a run. It was more like an awkward shuffle and mostly walking after that, but I did it.

It’s taken me a long time to get back into running, and I do mean a long time. It’s taken me probably a full year and a half to get back into a schedule of every day running, because knowing what to do and putting that into practice are very different things. Regardless of my years of running as a kid, running was hard now. I couldn’t jog half a mile when I started back. Running too long would make me cough and throw up and it would make me so frustrated knowing that I had been a decent runner before and now I could barely run one mile. But I kept at it.

It’s taken a long time, but I now run every morning. And every morning, I do my treatments and my vest as well.

When I rejoined my cross country team last year, and was running long distances again, my lung function shot up to 67%. From high 40’s to high 60’s. The proof is in the numbers.

So college was a hard transition. Suddenly, when you get to college, you don’t have your parents there telling you to do your treatments and make you go run or do your airway clearance. You’re on your own and you want freedom and you don’t understand that by ignoring your responsibilities to CF, you’re slowly killing yourself. The way I see it now, is that I want the best possible way of life for myself. I hate feeling sick and I hate my lungs hurting all the time. Airway clearance and nebulizers and the vest, these things were all created so that we could better our way of living – so that we can live longer and fuller lives. And if we have these amazing weapons to fight CF, running included, why on earth wouldn’t we want to use them?

It’s hard to fit in that schedule with school and work, and life often gets way too busy. But I’ve realized that you can’t ignore CF. CF was there affecting my lungs every day, whether I acknowledged it or not. But by acknowledging it, you can fight it. And yes, it is embarrassing going out in public and running while you’re coughing up mucus everywhere and puking on the sidewalk in front of your neighbors. But you’re fighting a battle and you should take pride in the fact that you’re doing everything in your power to beat CF.

Currently I do not run as many miles as I did when I was on the team, and my lung function is down again to about 58%. However, I have now graduated college and have refocused my life to getting longer and longer runs in. My goal is to get up to 10 miles before this year is over, and I know I will succeed. I’m no longer afraid of quitting running, because I recognize that running is more than a health benefit, it’s a way of life. It’s something to take pride in every day. And you feel so much better after you run.

Of course there will always be ups and down, and hospital stays and picc lines and surgeries. But what I’ve realized is that you can’t let those things stop you. You have a picc? So what. You still go for a run, just like you still do your vest and do your nebs. Airway clearance should never stop because you’re sick!

So for those who are entering college, remember to make your health a priority, always. Because once you stop taking care of yourself and lose a good deal of lung function, it’s hell getting it back. It’s much easier to keep up with your treatments every day and exercise every day, instead of spending months in the hospital.

My leaving message to everyone here is to find your exercise of choice, and learn to love it. Airway clearance through exercise is the easiest, most enjoyable, and most effective way of getting mucus out of your lungs. So take your health into your own hands. Make exercise a part of your identity, and CF doesn’t stand a chance. Whether it be running, biking, swimming, hip hop dancing, whatever you want, just do it, every day, and the world is yours.

Ayn's Bio: My name is Ayn Learn. I was born on July 5th, 1988 in Giessen, Germany. I was premature because of Cystic Fibrosis, and was diagnosed immediately because of CF complications. I moved to America when I was two and grew up in California, where I still live today. I have one older brother, Nathan, and I’m so lucky to have him as well as my parents who are so supportive. I love my family and our three kitties so much. I know I wouldn’t be the person I am today without them. I started running when I was four and ran throughout my childhood. I’ve had twelve sinus surgeries, one intestinal surgery, one deviated septum surgery, and a lot of PICCs and hospital visits, but fortunately CF hasn’t affected my education. I graduated from high school in 2006 and graduated from college this very month, March 2011 in English Education. I’m currently coaching two middle school running teams and I absolutely love it! I now plan to become a middle school teacher and will pursue my Master’s degree in the future. CF has definitely shaped my life, but it does not define me. I have many passions and I try to live my life without letting CF control what I do. I love to sing and to write songs on the guitar, I love to write and to read, I love photography and running, and I love the fact that medical advancements are getting better and better so that we may pursue and enjoy our passions in life!

Note from Ronnie: Thank you SO MUCH Ayn for taking the time to write this inspiring and powerful blog. You make it so clear just how important exercise can be when woven into our daily routine. Like you said, if our desire is to live a normal life, then we must be willing to do what it takes to take care of ourselves. Even though it wasn't always easy, you've showed just how powerful treatments and exercise can be, even if we fall off the wagon for a bit. Sometimes, sharing the bad decisions we've made can be just what others need to hear to kick it into gear! Thank you.

1 people had something to say...:

Anonymous said...

How is Ayn doing now? I'd love an update. :-)