Tuesday, February 28, 2012

My Ever-Changing Definition of Cystic Fibrosis

** I apologize in advance for the length of this blog post. If you do not make it to the end, I will definitely not be offended.  Some of my posts are written more for myself, my CF community, and my future child/children, rather than just the public.  This is one of those posts, and I felt I needed to provide a lot of explanation throughout.**

Inspired by fellow blogger and fibro, Ronnie Sharpe, I felt it was about time I wrote about my views of cystic fibrosis and what it has meant to me throughout the years. 

Those of us who have cystic fibrosis all look at it slightly differently.  Some see it as a burden, others as a constant fear of death, others as just an inconvenience, and still others even view it as a blessing.  For some, the definition of cystic fibrosis is a combination of all of the above terms and more.  
Understandably, my definition of cystic fibrosis has changed throughout the years as I’ve matured.

When I was little having CF meant nothing to me. I ran, jumped, played hard, swam, and did everything normal kids do.  I had to do my treatments, which I hated, but that was all that was different.  This idea of CF stayed with me until my senior year of high school.  I often skipped treatments as I got older, but I could do the same things every other teen could do, so I didn’t view it as much of a problem. If anything, I enjoyed getting out of school for CF clinic days!  At this point, CF, to me, was an undefined “illness” that I had to deal with, but rarely affected me.

During my senior year, my definition of CF changed drastically.  I got sick. Really sick.  I entered the hospital with my O2 sats being quite low, and I was told by a doctor that if I continued this way I’d be looking at a double lung and heart transplant in a few years (talk about scary for a 17 year old). Because of this flare-up, I had my first PICC line and was home from school for a long time.  I also began connecting with my first fellow CFer, Jeremy.  Jeremy lived in the same town as me and had been reported in the local newspaper following his successful double lung transplant.  He was 22, not much older than me, and I felt a strong need to talk to him.  I honestly can not remember how I found him, but we formed a quick friendship where he encouraged me to become more compliant.  We never met in person, but we talked for hours on AOL instant messenger.  At this point, my CF was beginning to scare me.  Due to my first hospitalization and my first PICC line, I realized what it meant to be sick because of cystic fibrosis.  Jeremy helped to calm me down, but at the same time I looked at him (22 years old and having a transplant), and I wrongly figured that would be me as well.  I thought I had a good 5 years left, and CF suddenly meant a shortened life expectancy which invariably led to an early transplant and daily worrying.

That fear multiplied enormously when Jeremy began getting sick.  A few months post-transplant, and he was sick with a lung infection.  He struggled off and on for a few more months before unfortunately passing away.  He was the first fibro I had grown close to, and this was the first time I realized that CF was unfair and painful.  I attended his funeral, unable to keep myself composed, and then I became angry and scared.  I feared death, a lot.  I was angry at CF for taking Jeremy at such a young age.  I hated it all, and I saw CF as an evil, unjust monster lurking behind me with every step I took.

Soon after his passing, I looked for CF support groups to help me heal.  To show me that there was more than just an early death with CF.  At the time (around 8 years ago), I found complete negativity. I couldn’t find a single positive story, and my findings only reinforced my fear and anger about the disease.  I ended up at a therapist’s office and that finally helped me to deal with the feelings I had.   I was working on my fears and pushing the fears I couldn’t deal with to the side.  I began forming a closer relationship with God, and I felt better about my life expectancy, my future goals, and basically life in general.  I also realized after talking with my therapist and my doctors that CF affects every single person in a different way.  This comforted me tremendously, and I began to realize that CF could not be clearly labeled and had to be dealt with in different ways for different people.

As I went off to college, I let my fears mostly subside.  I did my treatments, though nowhere near 100% of the time.  I enjoyed my evenings, I went to my first parties, I enjoyed a drink or two, and I fell deeply in love with David.  Between David and my wonderful roommate, Lindzi, I was encouraged to keep doing my treatments.  I had a handful of people (David, Lindzi, Anna, a childhood friend of mine, and a few others) who truly accepted me for who I was, despite the fact that I took countless pills and did nebulizing treatments.  They pushed me to keep myself healthy, and I truly owe them a lot.  Because of this love and support, I became less fearful of my disease at this time.  I sadly, however, hid my disease from everybody I could.  I had done this all of my life, and I still worried about people accepting me.  CF, to me, was something to be kept in a closet, hidden, although worked on privately, daily.

As college came to a close, I found myself engaged and planning a wedding, graduating after completing a double major with honors, and happier than I ever imagined.  By this point, I was starting to do my treatments all the time.  I would occasionally miss one treatment here or there, but I would say I was 90% compliant.  David and I moved in together in May 2009, and even though I was being mostly compliant, my fears came back full-force.  This was the first time I really was fully taking care of myself without help from my parents, and I was worried whenever my cough sounded different or I had a cold.  It took me a good year and a half to get over this new-found fear, but I attribute this period of insecurity to the fact that my life had dramatically changed (in regards to living away from home), rather than because of my cystic fibrosis.  I can still say, however, that CF became a fearful uncertainty, where I always wondered if a cold or cough would land me in the hospital with another PICC line.

Now, in 2012, I honestly view CF a lot differently than I did during late high school and throughout college.  I have been accepted warmly into my CF family, which has helped me maintain a positive attitude.  I have been told by my doctors that my CF won’t be what takes me out, and I really try to look at it just this way.  I firmly believe that CF will be a part of my life I deal with every single day, but it’s not a curse to me. It’s a burden some days, especially during vacations, when I have to take time out of my day for breathing treatments.  It causes fear at times, when my breathing is difficult for a day or when I get sick.  CF makes me sad sometimes as well, especially when I lose a fellow cyster or fibro.  BUT, overall, I look at CF positively.  I see it as an ever-changing disease.  When I was born, average life expectancy was late teens, early twenties.  Now, it’s almost 40.  There are new drugs being developed all the time for this disease, and I am so grateful for that.  Because of these factors, I truly see myself as a grey-haired old lady, holding her grandkids and complaining about these young whipper-snappers who plainly don’t realize how lucky they have it. I firmly plan on embellishing all the “rough-patches” of my childhood in the stories I tell them. 

CF may be a part of my daily life, but I’m working as hard as possible to ensure it doesn’t take me out of this world.  I focus on the positives, and I fight every single day to maintain 100% compliance with my treatments and good health.  Today, CF is as much a part of me as my brown hair and brown eyes, but it is certainly not an all-encompassing label which defines me.  It simply is, and I accept it, work to better myself because of it, and live every day to its fullest, a life motto cystic fibrosis reminds me of daily.  


  1. Man! I wish I'd known you when you were a teen. I actually started an email group for teens with CF that went strong for several years (till we all grew up and got busy!), purely because I was so frustrated at there not being (at that time) a place for CF teens to connect.

    I loved this post - it was so interesting to see how your life and perceptions were shaped! I can imagine that your friendship with Jeremy and seeing him pass away would be a huge deal. I have actually never had a close friend with CF pass away, which is a serious miracle. Reading your post made me think about the things that shaped my perceptions of CF along the way as well. Beautifully done! Thanks for sharing it.

  2. This is an AWESOME post and I'm really glad you took the time to go into that much detail. I've, too, experienced some of the same emotions towards my CF and I think you explained it well - it's always changing. I hate to copy, but I definitely see a post like this in my near future. Thank you for sharing. :)

  3. Cindy, I definitely wish we had known each other as teens. I think it's incredible that you created an email group for CFers. I'm sure that group meant a lot to those involved. I am so glad that you have never experienced a close friend's passing. It definitely hit me hard at 17. I would love to read about how your life has changed your perception of CF.

    Colleen, thank you so much. I'm glad you enjoyed the detail (and that you didn't fall asleep through it since it was so long lol). I think it's interesting to hear what others feel about "what CF is." I would love to read a blog post that explains your "ever-changing definition of CF." Please, feel free to take the idea and run with it!

  4. Great post! Thanks for being willing to share your feelings and fears related to CF. I think I may write a similar post as well about how my views of living with a CFer has changed over years. We're so glad to have found you as a CF friend!

  5. Thank you Kristin! I would LOVE to read a post about how your views of being a CFer's wife have changed. I think it would be fascinating! :) I'm so glad to have you and Jesse in CF family as well :) You two are wonderful!

  6. Megan, It was great to read your perspective on CF and the changes throughout your life. I'm glad Jesse and Kristin have so many friends through their blogs and share their feelings and information so freely. May God bless you and David with a family soon.
    (Jesse's mom)


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