To Worry or Not to Worry

In the world of cystic fibrosis, I often feel like the new kid at school.

Most CF patients are diagnosed before the age of 3, giving them – and their loved ones – a lifetime to become acquainted with the intricacies of living with CF.

As I’ve mentioned before, I was diagnosed at 16. Just a little over 10 years ago. And I often feel like I have a LOT of catching up to do.

Finding out I had cystic fibrosis as a junior in high school was overwhelming. I did what the doctors told me to and less than two years later I was heading off to college.

Without my parents or doctors around to remind me of how important it was to take care of myself, I let my medications and therapies slide.

It wasn’t until about four years ago that I really started taking this seriously. And I often have questions about what’s “normal” for a CF patient versus what’s something I should be concerned about.

Last night was a good example.

At about 2:30am I woke up gasping for air. I have plenty of coughing fits, but I hadn’t experienced anything like this. I would cough, but was then unable to take a breath. It was as if my throat would seize up, and no air could get through.

It felt like this went on forever, when in reality it was probably just a few minutes. But it left me shaking, tears running down my face, as I tried to pull myself together.

After a few gulps of water and some deep breaths, I was okay. I went back to sleep, waking up just a few hours later feeling completely drained.

And I’ve felt like that for the rest of the day. As if I didn’t get a second of sleep.

No doubt, something like that is taxing on my system. Heck, my body gets tired some days from just keeping my lungs working. But the worrier in me can’t help but wonder if this is a sign of something bigger going on.

I know that “bad” days are just a part of living with CF.

But deterioration of the lungs is the eventual outcome. And nights like last night make me wonder how I can tell a bad day from something worth worrying about.

For now, I’ll just take it easy and monitor how I’m feeling. Hopefully whatever spasm I had last night was just a result of the (awesome) Cto5k run I did and I’ll be back to my energetic self in no time.

CF’ers out there, any advice?

On a more fun note, I’m excited to tell you that this ol’ blog has been nominated for a Mobbie in the Best Personal Blog category! If you have a second, please head on over and put in your two cents (whether it’s for my blog or not!). You can vote every day from now until November 10.

One more thing: I wanted to thank every single one of you for reading. There have been times where I wasn’t sure if this blog was worth continuing, but whenever I post something difficult, your response makes me realize that this is exactly what I need. So thank you. Your sweet comments, thoughts, and words of encouragement make me feel more supported than I could ever express.


7 thoughts on “To Worry or Not to Worry

  1. I never realized how scary CF could be… you are the first person I’ve ever met with it, and honestly I admire your bravery and patience… and your willingness to share your life through this blog!

  2. I would tell you not to worry, but I know that is often nearly impossible. Think happy thoughts – and keep an eye on it. You might want to call your doctor to see if it is normal or not.

  3. While the road we are traveling with L is totally different on so many different levels…there have been a couple times when something has happened that has been a bit odd and left me scared. I went ahead and checked in with her docs both times and it really helped me to get some feedback. Maybe a call to your doc would help?

    Even if it was just a fluke, how scary!!

  4. Wow, how scary! I hope you’re feeling better by now!

    (Sorry, I’m behind on my blog reading)

    And I echo the chorus in saying, call your doctor about this stuff!

  5. Thanks for sharing your story. I’m sure that the other 29,999 will love to hear your experience if they’re lucky enough to find your site.

    I remember when my friend and neighbor had CF. I would go over and beat him regularly (I think it’s officially called percussion therapy). It was rough for me to do it, but I knew it was good for him. The severity of CF really hit me when he was getting ready to get in the third position (upside down). As he got ready to get into position he said, “I hate this one. It’s no fun at all. Do you know why I do it?” I said, “why?” Then he told me in a very matter of fact way, “Cause all my friends that didn’t do this one aren’t here anymore.”

    He’s 57 living with CF, so hopefully that gives you hope. I sent him a link to your site. Maybe he’ll stop by and participate.

    • Hi John – Thanks so much for commenting and sharing your experience, especially one that has a positive outcome! If your friend stops by my blog, I’d love to talk to him. I was diagnosed late in life, at 16, so I often feel like I’m still playing catch up and have so much to learn. Chatting with someone who has a lifetime of CF experience would be very helpful!

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