Tuesday, July 28, 2009

My CF Firsts

Shout out to "Cystic Gal" for the idea to post these. Also Ronnie, don't worry, I'm going to get around to your question too. I've got NOTHING but time right now.

CF Firsts

Diagnosis: 6 Weeks old in 1981 for failure to thrive and pneumonia. As an infant I was well over 100 on the sweat test, which is apparently a major whoa kind of situation.

First CF Doc: Dr. Cotten and Dr. Accurso at Children's Hospital Denver . . . love that team.

First CF Friend: My next-door neighbor at the house where I was born. She was/is older than me by a couple of months, but was diagnosed a year or so later after it was noted that she had almost all the same symptoms I had. A couple years later, she gained a younger sister with CF. The three of us are still close.

First time I *knew* I had CF: Probably at around 4-5, which is when I started working the American Airlines Celebrity Ski Event to raise money for CF. I was just there along with my two neighbors as (semi) cute CF kids, no duties, but there was an older girl there with CF and she was sick. She spoke about CF and they took us out of the room, but not before I knew she was saying something scary. A few years later she died and the three of us took on speech duties.

First Nebulizer Treatment: Early, early, early. I don't remember how old I was, but I sure remember being strapped into that mask-like contraption.

First Time CF Scared the Sh*t out of Me: When my two CF friends were young, they ended up in the hospital for tune-ups, during which they had some sort of drug reaction. Both of them were in the hospital, and both were given something like a 75% chance of dying. I went and visited them and sat with them (I had to wear all these isolation protocol stuff) and I was so scared. This was also the first time I realized CF might take my close friends. It didn'[t, thankfully.

First Time Using Pulmozyme, TOBI, etc: I was lucky enough to get on these drugs right when they came out (my center was huge on new developments). I remember the old school tobra before the TOBI.

First Hospitalization: Aside from the 6 weeks thing, I actually wasn't put back in until I hit 16. I did home IVs once before that, but at age 16 I started going in at least once, mostly twice, a year. The good thing about all this is that I never went to the hospital back when cystics shared rooms, although we were all on the same ward, which we roamed freely with masks on in the hall, and shared a computer.

First Time I Realized CF Could be Terrible, but Doesn't Have to be Limiting: The room next to me had an older cystic named G, who was almost always in the hospital when I was and we almost always got the same rooms. He sounded SICK. But G went to college, at a great school in Colorado several hours from his family home in Denver. I didn't talk to him much because he was always so focused on getting better and I was focused on getting OUT, but I do remember thinking that it was awesome how he just kept going with his life even though he was so sick. And I also remember hearing when he died, and being really happy for him that he got his degree. It must have mattered so much to him. RIP, my first CF role model.

First Time I "Switched" CF Docs: 2000, when I went to Atlanta for college. Emory was great, but the CF center didn't work out so well for me (probably because I was too stubborn to actually go) so I ended up traveling back to Denver for clinic and hospitalizations.

First Time CF Felt *REALLY* Awkward: At college I knew two other people with CF. One was a year older than me and one two years younger. The younger one was extremely healthy, had never done IVs, didn't really do airway clearance, etc. The older one I didn't know much about until he died, very suddenly. I remember learning that he died from other people, and them being totally unwilling to even say the words "cystic fibrosis." Instead I think they told me it was "illness-related but unexpected" and sort of looked away. I remember this was ridiculous. What were they sheltering me from?

First Time I Went to an Adult Clinic: 22 years old, having just moved to NYC for law school and realizing that no way was I flying from NYC to Denver to see my old pediatric doc. I love love love my CF doc and clinic here. I can't say enough good things about them.

First Time CF Really, REALLY Sucked: I graduated college sick, probably because I'd worked myself to death on my thesis, but I had LOTS of plans, including flying out to CA and driving back to CO with my sweetheart at the time, who was in school in Berkley at the time. So I got out there, and we planned our route, which included a much-anticipated stopover in Vegas -- first time for me since turning 21! -- and started to drive. Well, by the time we hit Vegas I could barely walk, much less enjoy the fun. We tried to go out for yummy dinners -- I had no appetite. We tried to go to Cirque du Soleil -- I had a fever and chills and spent the whole performance hoping not to throw up. We tried to walk the strip -- um, yeah, NOT happening. It was awful. By the time we reached Denver I was sick as a dog, had to be put into the hospital immediately, and spent the next two weeks wondering why I ever let myself go that long.

First (and Many) Time(s) CF Made Me Feel On Top of the World: When I suddenly realized (a little late in the game, I'll admit) that there was a way to keep living AND be totally on top of my health. Standing at the podium at the Celebrity Ski event, knowing that we just raised over $2 million for a cure and looking out at a sea of faces of people who really cared. When I graduated from law school and knew just how much I had overcome to live that moment. When I went to Greece and climbed the Acropolis and Delphi and Delos and all sorts of ancient hilly monuments with no good cystic resting points and knew that I was still in pretty darn good shape, CF or no CF. When I cart my O2 down to the exercise room in my building, hop up on the treadmill, and start busting my ass at a 3.5 MPH hill walk and know that everyone else in there is surprised at the young woman with the obvious health issue still making the effort. And of course, when I think on all the AMAZING cystics who are fighting incredible battles to stay healthy, or who fought their battles with such strength and grace, and when I look at how so many of us fight with everything we've got not to let this disease keep us down even when it seems to be winning and the fighting seems almost absurd. Sappy as it sounds, that's when I'm most proud to be a cystic myself.


  1. Ooo this is a brilliant idea. I'm totally doing it. :) Xx

  2. Thanks for sharing your firsts!

  3. Piper thanks so much for sharing. You have an amazing life and attitude!

  4. I am reading your blog for the first time and LOVING it!
    My kiddo, Lucy, was diagnosed at 2 weeks old and is now 19 months and I have recently, after seeing CG and aCaseyofCF's version of "firsts", done a Lucy's CF firsts.
    Can't wait to go read more of your snarky, witty posts!

    ~Lucy's mom AKA Kacie