Darn FEV1

That's about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

That’s about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

Most people go their entire life without knowing their FEV1. How lucky is that?

Now that I bought this little FEV1/6 meter, I know mine every day, and throughout each day.

It’s a love/hate relationship. Or at least one of happiness, or frustration, depending on the results. It’s the medical equivalent of a mood ring for me.

On the plus side: The tiny meter did help the doctors diagnose the TOBI podhaler bronchospasms, which were solved by eliminating the podhaler and adding oral steroids and Cayston.

The not-plus side: Over the past 3 weeks, since staring inhaled Tobra through the eFlow, my numbers continue to go down, but not as quickly as the podhaler.

So, the guessing game begins: Am I having bronchospasms? Is the Tobra not hitting the bugs as well? Would oral steroids work again? Is it allergies? Am I reacting to M&Ms or something else I’m eating?

What am I doing to cause the FEV1/6 drop?

It’s difficult to impossible to answer, as I’m not running my life to the standard required for a scientific experiment.  CF is so sophisticated I don’t know if it would matter if I did. Just one more reason to hate the disease.

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8 thoughts on “Darn FEV1

  1. A blessing and curse for sure. While knowledge is power, it’s also a mind f**k. I’m so sorry you have to work so hard to keep your numbers up. And I’m sorry CF makes us all work so damned hard to figure it out. Can it ever just be simple? Not with CF.

    • Margie,

      Every CFer should have one. One day the results will be uploaded to the CF clinic and they’ll see trends. It’s a great little device and I wish I had it years ago.

      CF is never simple. And we’re responsible for so much of it ourselves. We’re on our own a lot of the time. Luckily your daughter has you. I didn’t. I was on my own at 18 and made a lot of mistakes.

      UC

  2. Dear Madman of LAShire,

    Lauren had a problem with her LF dropping a year or so ago, they narrowed it down to the promixin causing bronchospasms. She now just uses the Podhaler month on month off but the doctors have given her free reign to change to 2 weeks on 2 weeks off if she feels the need.

    I hope you get to the bottom of the problem soon.

    Sir Sean

    • Sir Sean of West Ham,

      I think I remember the problem Lauren had. I think colistin is next for me, which is promixin, isn’t it?

      I guess the little pill hasn’t kept her off Tobi. She looks great in the recent FB photos.

      UC of East Ham

  3. UC,

    A little (or LARGE) dose of a Bronco win Thursday night will get you back on track. I hope! Sorry you’re having to work so hard but the numbers aren’t reflecting it.

    Regards,
    Larry

  4. Ah, tobi can be tantalizing but cruel. When tobi first came out, I started it and got the lowest FEV1 number I’d ever had. A couple of years later, with dwindling non-allergic antibiotics at my disposal, I tried tobi again. Same thing. Then “just to be sure” we tried it a third time and my numbers plummeted again. The bronchospasms really take you down. I’ve been wondering about the podhaler, but your experience probably doesn’t bode well for me being successful with it either. It would sure be nice to have something rather than IV’s that could still work. I feel your frustration.

    • Sherri darling (Springsteen reference),

      I think TOBI used to hurt me too. But I didn’t know it at the time.

      You should try the podhaler. Get one of the small FEV1 meters and see what happens.

      So glad you wrote. Agree with you about and IV alternative.

      UC

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