About My CF

Each CF patient’s story is a little different; here’s my version.

I was diagnosed late, at 16. 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.

As of now,Ā 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).

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 (which I’ll talk about more later).

Daily treatments:
– 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’ll update it as it changes.

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.

I want to stress that this is MY CF story. Every patient has their own. And every patient’s experience is a different one. I’d love to hear yours.

And if you have ANY questions, please ask me.

A lot of other issues (relationships, my daily life, future children, etc.) will be talked about as I write this blog.

I look forward to where this could take me. And thank YOU for reading!

Make a donation to the CF Foundation.

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14 thoughts on “About My CF

  1. Thank you for putting such a candid verion of your story out there for me to read. I was diagnosed when I was 25, and it has only been three years. I have quite a bit of trouble accepting my illness. I am not at the point where I can be grateful; I am sorry to admit. This is all very new to me, and have never met anyone else with the illness because of contact precautions. They are crazy about them in Buffalo. So, it was nice to hear your story. It’s a very lonely disease, I think. Thanks for making me feel less alone in this.
    God Bless you, Katie Clark

  2. It’s great to hear your story and I might also add that you’re cute as a bug! Why are we Cystic gals all so adorable? It, also, must be in the gene!! I wanted to invite you to read my blog, CysticGal.blogspot.com, and if you like it, you can join us at CGUnBlog, where it’s just CFers (mostly gals) in a private blog. I would love to have an “adult diagnosis”- which is what you are ? I guess, since you were diagnosed so late!

    You will rock out with this disease girl, and don’t ever think it can stop you from running a 5K or running your life!!

    Beth Peters
    29 w/ CF

  3. oh my gosh — what a shock it must have been to be diagnosed at 16! i work in pediatrics (i’m about to finish residency) and have gotten to know many of our patients with CF pretty well. i can’t even imagine the time and the discipline it must take to get in the treatments daily — and in some ways, it might even be harder for you given how late the diagnosis was (ie, you didn’t grow up doing it). i wish you all the best and admire your courage in sharing your story.

  4. Hi. I have a son with CF, diagnosed at 3 months old. I can never know what you feel like, but I can can tell you what it feels like to have a child with the disease. Devastating.

    Soon after his diagnosis, I found sharktank, an internet group that discusses the science behind the disease. After many years of research, our group has discovered something that very well might be the answer to this dreadful health condition.

    I appreciated your following us on twitter and retweeting us. We need help to get the word out. When you go to our website, you may not understand the science that we write about, but thats okay. It is still very important that you take a look. We have a blog that we started a couple of weeks ago, that explains the story in very simple terms. Please read it and please pass the word on to others with CF. http://www.Sharktank.org

    Thanks,
    alan

  5. Wow, I don’t know how I’d have coped with being diagnosed at 16! I was diagnosed at birth, so I’ve never know anything different. I’ve also got the goal of running a 5k (in February at Gasparilla in Tampa in 2011).

  6. hey girl –
    just wanted to shoot you a word of encouragement. i can’t imagine what you’re going through, but i admire your strength! i got diagnosed with fibromyalgia and ovarian cancer a few months ago, and always appreciate “meeting” another strong spirit. keep your chin up, your heart full of love, and your belly full of good food šŸ™‚
    – rebekah
    [s – looking forward to reading older posts!

  7. I stumbled upon ur blog through a tweet someone had posted. I’m a CF Blogger too! Diagnosed at birth/life flighted for a surgery (so lil obvious). Ur very right about how nobody has the same story, which I love reading other Cf Blogs! just wanted to say hi and look forward to reading more.

  8. Hi Katharine! It was so amazing to hear your story, as I was diagnosed at 18. I have pancreatic insufficient CF, so as of right now it is only mostly affecting my pancreas and digestive system. I am now 20 and although it has been two years since finding out, I still find myself struggling with incorporating a new routine into my daily life. I have actually never met another person with CF yet, nor obviously met someone who was diagnosed at a later age as I was, so thank you SO much for sharing and being open about your story. It’s nice to know you are never alone in the struggles you face. God bless and hope you are well.
    -Medora Frei

  9. Hi Katharine! I’ve really been enjoying your blog. My daughter was just diagnosed with CF at 3 weeks old via nbs & sweat test. It’s been a huge adjustment and I’m reading everything I can. I was wondering what your mutations are? Thanks for all your sharing, -Lauren

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