Wednesday, October 22, 2008

Roller Coaster Ride

Lately I've been feeling like a passenger on some sort of really creepy roller coaster. Seriously, CF is always unpredictable, and I think people with chronic illness learn to manage expectations a little differently than most healthy people - if only because we know that things can (and often do) turn on a dime health-wise. We learn that things can go from good to bad -- or bad to good -- in a matter of weeks, days, hours, or sometimes even minutes or seconds. And this sort of up and down, peaks and valleys kind of lifestyle is a little unsettling, especially because it intensifies as CF progresses. It's a weird sensation to feel fine one day and find yourself admitted to the hospital the next. And it's even weirder to look around and realize that this sort of strangeness has suddenly become routine.

The past two years of my life with CF have been totally erratic. One week I'm at baseline, the next I'm suddenly fighting off exacerbations the like of which I would never have imagined just a few years ago. Even my baseline itself has been up and down, to the point where I've come to expect anywhere within about a 10 point range for PFTs, and that's when I'm feeling "healthy." My sats go from 88 up to 98, sometimes literally week to week. Heartrate can be anywhere from 130 to the low 60s. My weight has fluctuated from 113 (scary, I know) to 135 (close to the goal weight my tx team identified). It's enough to make even the most experienced roller coaster fan reach for the emergency stop button.

And that's just the physical stuff: emotionally the highs and lows have been even more intense. I've been told I need to be evaluated for transplant while simultaneously I hear stories about CFers with PFTs well below mine who have avoided the list for 10 years or more. I'm told that my body is failing yet encouraged to keep working and pushing myself. There's a sense in the air that the damage is beyond my control, but sometimes I see glimmers of hope - that maybe a new drug or more intense treatments or exercise might make all the difference. I'm torn between the desire to be as normal as possible and live my life (intense work/social schedule and all) and the desire to dedicate more and more time to health concerns so that I can extend that life as long as possible. I want to take all the steps to be ready for transplant, but I don't want to expect the worst all the time. The balance between survival and actually living is constantly on my mind.

I know this seems like a kind of depressing post, but the reality is that all of this is triggered by GOOD news. Awesome news, actually. I went to clinic yesterday and blew a 44% for my FEV1 - up from 37% just a couple weeks ago. My sats went from 93 and 130 to 96 and 72. I didn't do IVs in the interim; this is all from cipro, prednisone, and a whole lot of luck and really hard work.

Am I happy? Absolutely. Happy and extraordinarily grateful. Visits like yesterday make me realize that despite some rather grim predictions, there's actually some real life left in these lungs of mine. Which is such an awesome feeling, because even though it might all change tomorrow, right now I can just enjoy the high. In the meantime, I'm writing 6 flags a letter - I think a new ride called "The Cystic" could really raise their ratings!


  1. Holy woman your PFTs are higher than mine!!!! WOOT!!!!!!!!!!!!!

    I think CF is the only rollercoaster my fraidy cat arse can handle!!!

    Hugs and congrats to some awesome numbers!!

  2. words exactly! I am glad to hear you PFT are up that is always a good feeling.

  3. Wow an intense post. I was almost afraid, but what a good ending!! I am so glad you had a good clinic report.

    Congrats to you!

  4. That's really good to hear.

    The CF rollercoater isn't fun at all. Altough my fpt's never really changed, one day I would feel good and the other day I would feel awful with the same numbers.

    As you say, it's a really fine line between surviving and actually living. In dutch 'living' is 'leven' and 'surviving' is 'overleven'. Almost the same words. Shows that thin line even more...

    I have thought a lot, that I was 'overleven' instead of 'leven'.