Sunday, May 16, 2010

Tune-Ups, Adjustments, and Other Technicalities

Okay, since I'm pretty sure my post of a few days ago constitutes a renewal of my vows to my blog, I guess it's time to do my part and start sharing. And, just so everyone know up front, this isn't going to be the most of uplifting of posts. Nor is it going to be an angry rant. It's not going to be a litany of complaints (I ended my pity party last week -- sorry for those who never scored an invite) and it's not going to be a philosophical exploration of my latest illness-induced existential crisis. It's not even going to be very funny (gasp!), which for the 10% of people out there who actually think I'm funny most . . . um, well, make that some . . . okay fine, any of the time, might be a major disappointment.

This post is just going to be about my life. It's going to be about my CF. It's really just going to be, plain and simple.

The fact of the matter is that things are kind of feeling off lately. By which I mean . . . well, I guess it's kind of hard to explain what I mean. I think I mean that I've been sick, which in turn has led to more antibiotics and less energy, and also an increase in some of my other drugs that have, shall we say, less than awesome side effects. And as a consequence of this infection-ridden and drug-overloaded state, my body feels kind of, um, well I guess weird would be a good word to describe it. I feel exhausted a lot of the time, and I don't mean just the sleepy kind of exhaustion (although that's definitely part of it). It's kind of like my limbs are just heavier, and one activity is usually enough to make me want to lay low for the rest of the day. I have some other symptoms -- like the fact that I'm still coughing, have a high HR, and ran a low grade fever for part of the day today -- but generally speaking I don't feel bad, per se. I just don't feel quite right, either. I'm not sure what it means, but it's definitely affecting my ability to stay upbeat and push my way through this most recent bout of infection. Whether it's the lung stuff or the drug stuff or some other sort of stuff remains to be discovered (and, as we all know with CF, it might never be fully explained), but I'm hoping things are going to even out here over the next week.

And, of course, I'm well into week 3 now on IVs. This is the 5th course of 2010 already. Suffice it to say, I'm over the IVs. There's a reason they're called "tune-ups" -- you're just not supposed to need them this often. Period.

Uncool, CF. Really uncool.

The other side of the coin is the emotional stuff, and dealing with the fact that I seem to have hit a little bit of a transplant road block. Throughout the end of March and all of April I was getting calls pretty constantly (sometimes up to two a week), but lately I haven't been receiving, well, any calls at all. I know of course that transplants ebb and flow and that there can't be a suitable donor for me every week -- I'm certainly not blaming anyone or complaining about my center -- but it's still frustrating to go through that many dry runs and then hear nothing for such a long stretch. And it's also hard because my mother and I started living a little differently when we were getting all those calls. How could we not, after all? We started staying a little closer to home, planning our days a little differently, and even -- in a veritable fit of optimism -- making some plans for the future. Crazy dreamers that we are, we could actually imagine a time when the phone might not govern our lives, and distance from the transplant center might not be our number one criteria when planning a weekend. Meanwhile my sister has been putting off things like necessary business trips because she certainly doesn't want to be in Africa while her little sis is getting new lungs. In other words, going from thinking transplant was "so close we could taste it" (or, in some cases, so close we had actually said our "see you laters" and were in our respective OR/waiting room positions) to thinking once again that it "could be 2 days, could be 2 weeks, could be 2 months" is really a huge adjustment. Not one we can't handle, of course, but it's been kind of tough at times, not gonna lie.

Of course, there's a lot of good stuff happening right now as well. "Team Piper" (yep, I'm just that creative) is going to walk for the Cystic Fibrosis Foundation this next Sunday and has already raised over $4,000 for a cure. I am super blessed to have a ton of friends and family coming to walk with me -- my Godmother is even flying out from CO! My daddy came into town this weekend and he, my mom, and I walked from TriBeCa to upper SoHo today (call it practice for next weekend) where I promptly bought myself a very cool new present. And I've decided that as long as I'm not getting a call, I should get busy doing other things, so I've planned a couple of cool NY outings for next week and am hoping to start completing some projects I've had floating around in my head for a while now. To top it all off my dog walker is currently vacationing in Europe (NYC dog walking is clearly a lucrative professional choice), which means that I foresee a lot of outdoor bonding for the shorkie and me over the next week. Not a bad thing, for sure.

See, told you it wouldn't be totally depressing, right?

So there you have it: the physical, the mental, and the, um, other stuff. I think the long and the short of it is that I'm still waiting, and any transplant patient (or hardcore fan of 80s rock) will tell you that the waiting is the hardest part. I'm pretty sure I'm holding my own with it (most of the time), but that doesn't make it easy, and it doesn't make it all that fun. Luckily I'm also pretty sure that last one is something I can change with a little effort -- and maybe another step down on my Prednisone taper.

And here's to trying, beautiful people.


  1. I was at your pity party! I was at your pity party! (well...via text.) I'm glad the party is over, but it blows that you still feel "weird" and etc.

    I blame the drugs 100%. After 2 weeks, IVs always wreak havoc on me. I usually start calling them, "the poison," in revenge.

    "Time to do the poison."
    "Can you take the poison out of the fridge."
    "That must be the poison delivery at the door."

    The upside: perhaps it is killing the yuckos in your lungos, too?

  2. I heart you Piper, keep the faith!

  3. Sending hugs and strength... just wait til you come out the other end of this... nothing will stop you!

    God Bless!

  4. Stay strong Piper. We're all here for you..through the ups, the downs, the happy dances, and the pity parties.

    Sending lots of love & prayers & strong vibes your way!


  5. I'm glad you're back, Girlie Girl! I am praying for your lung tx. Keep the faith!

  6. Hey Piper, Thanks for the blog update. I hope you get back to feeling like you, soon! You're one amazing strong woman. {{{hugs}}} ~Juliet

  7. Your post reminds me of that feeling of whole-body tiredness and toxicity that CF and a bunch of nasty IVs gives you. I really feel for you. Just know that soon it will all be better and your life will be completely transformed. It really is amazing - hang on in there, stay as fit as you can.


  8. So wish I could kick CF in the butt and out of your body (and for that matter, out of everyone's body). I can, though, keep the faith with you and, when needed, for you. This message is wrapped up in all my love and support. I hope you can feel them wrap themselves around you as you you read this. You are strong enough. You are, Piper.