Monday, January 17, 2011

Seven Months Down and Oh, What a Ride

When I was a little kid I had two rides that I really, really, REALLY loved. The first was The Pirates of the Caribbean at Disney World, which was popular with my family as it was the only ride that both my sister and I enjoyed. The second ride, on the other hand, was slightly less involved and didn't require a trip to Florida: namely, the tilt-a-whirl at a local Colorado amusement park.

And wow, did I ever LOVE that tilt-a-whirl. Honestly, I was such a fan that I would literally beg for days to visit the park, and I once jumped out of a moving vehicle in an attempt to get on the ride five minutes faster. Yes, it was stupid and dangerous, but it was also an act of pure, unadulterated love. I mean, this ride and I were like a match made in intentionally induced nausea heaven -- how could my parents expect me to wait until the car was safely in a designated parking space for that kind of fast-paced, dizzy, scream-your-guts-out (and I mean that all too often in the literal sense) joy?! Clearly, they could not.

Fast forward about 20 years to the present. There aren't a lot of tilt-a-whirls in New York City (Coney Island excepted), and if there are you probably aren't going to find them in the West Village. Good coffee and amazing shopping? Check. Old school amusement parks? Not so much. It's a bit of a bummer, but then I remember that I don't actually NEED to pay $5 and step right up to get that kind of excitement anymore. Why, you ask? Because I've had a double-lung transplant. I get it all for free.

(*Dear readers: obviously, transplants are not free. They are not even close to free, as a matter of fact. I'm quite certain that this transplant is the single most expensive thing I have ever "purchased" in my life, in more ways than one. Just ask anyone in Arizona. But for the purposes of this post, I mean "free" as in I don't pay any extra for the excitement part. That's just like the added gift with purchase -- much like the grey crewneck that apparently comes with every purchase of "Pajama Jeans." Seriously, look it up.)

I have to admit that I personally feel my life has gotten less dramatic in the 7 months I've been living with these lungs. At the very least I feel more stable -- mostly because I don't spend all my time worrying about when or if the other shoe is going to drop. I'm pretty secure right now in the thought that I am alive, and to the extent that I might not be alive in a few years or even months, well, I guess that's true for everyone, everywhere. I just don't have the energy left to worry about it all the time after having done it for so many years already.

But I will also acknowledge that, for me at least, the drama seems just a bit more disheartening right now than it did back then, because before at least I could explain it. I could say with certainty that I was sick because I had mucus clogging up my lungs, and said mucus was infected with several strains of nasty bacteria that were slowly wreaking their havoc. I could feel the symptoms of every new infection as they came on and I could make fairly educated choices after considering both my mental and physical needs. In other words, I knew what was happening and I understood why, so even though I was scared I was also, in some ways, empowered. I felt 100% confident asking my doctor about a new treatment option or asking if I could attempt an alternative to one of her suggestions, because I knew what the risks and benefits were to each approach.

The thing about these past 7 months is, I no longer truly understand my body. This is, of course, not entirely true because I still know how to recognize things like a cough or a virus or whatever else. But on another level, I feel pretty clueless. I rarely cough enough to feel concerned because, quite frankly, 7 months ago even my best day sounded like a trip to your local TB ward. Now my worst day involves a few minor coughing jags set in between other "normal" activities, and it just doesn't feel like that big of a deal. On the other hand, I'm becoming more and more aware that most of my friends post-transplant don't spend their first 7 months constantly on IVs. I'm starting to get a few curious souls asking why I seem to require such aggressive treatment, and my honest to goodness answer is: I don't know.

What I do know is pretty straightforward, though. I know I have some leftover CF pathogens (namely pseudo and some recurring fungus) in my sinuses and trachea and that these sometimes drip down into my lungs. I know I've cultured some new bugs since my transplant, most likely due to my weakened immune system. I know that at least a couple of these bugs are fairly resistant and that I have some additional issues with antibiotics (such as hearing loss from Tobra and just plain old allergies) that make selecting an effective combination difficult. I know that I am blessed beyond measure by a very proactive transplant center and a doctor who favors an aggressive approach to treatment, especially right after transplant. I know that 7 months later I FEEL fantastic -- I can exercise and play with my puppy and have fun with my friends and go to the gym and do (almost) everything I've wanted to do for so long -- but that apparently my clinical results are still finding the right balance. I know that I am still absolutely as stubborn and impatient as that hard-headed little girl who took a flying leap out of her parents' Jeep Cherokee and ended up sitting by herself on the pavement -- a little scraped up but ultimately no worse for the wear.

I know that this is not going to be what the rest of my life is like post-transplant. I know that.

So yes, I am 7 months and a couple of days out of transplant. Yes, I am still constantly on IVs and I still have my port-a-cath in my chest. Yes, I really do feel as good as I claim to pretty much every single day -- I wouldn't BS to you guys about that, I promise. Yes, I get frustrated but yes, I still really respect my docs and am grateful to be where I am in terms of long-term follow-up care. And yes, I would do it all over again in an instant, in the blink of an eyelash, in a heartbeat.

Or maybe just in a breath.

With love, light and seriously immeasurable gratitude,
The Girl Who Cannot Wait


  1. You are such a great writer. Really enjoyed today's post.


  2. Your are an inspiration to those mom's that have small children with this disease. Learning the ropes early has been hard but sharing your story helps hear the REAL deal. Thanks for continuting to share your journey. You are an incredible writer.

  3. such a great writer piper! love this post. i''m 6 months out. i walk EVERYWHERE...because i can. woooonderful.

  4. Piper. I just can't see you sitting on the sidelines... then or now or in the future! :) Great post!

  5. I think pajama jeans would make the "ride" that much more comfortable and of course "fashionable" ;)

    Glad you're living the dream Piper!!!