Tuesday, June 2, 2009

Be Still, My Heart

No, really, I mean it. Be still. Please? Pretty please? Just for a minute or something? Seriously Mr. Heart, I'll be your best friend!

(Disclaimer: the author of this blog would like to state for the record that the above is not actually a request for her heart to stop entirely. That would be a little "too still" for her taste. Instead she respectively requests that her heart simply stop its persistent new hobby of adding extra beats and/or skipping beats frequently. Because, much like Sampson's favorite passtime of sliding his bones under the couch and barking loudly until someone retrieves them for him, this new game is getting really old, really fast. Seriously.)

So yeah, I've got heart problems, and for once they don't involve one too many glasses of wine and a cute guy at some hip downtown bar. Although frankly the 8 million doctors appointments (note: actual number of doctors visited may vary) and two ER visits I've had in the past couple of weeks indicate that the wine/bar situation might actually be a less annoying kind of heartache. More dangerous, sure, but less annoying.

Long story short I have some unexplained arrhythmia in my heart that has been really persistent for the past week and a half. And finally, after approximately one hundred and two attempts at self-diagnosis ranging from "transplant anxiety" to "TOBI reaction" to "heart attack leading to imminent death" (with the last one being a personal fave), and the normal 2-4 day period of "toughing it out" that seems to be the unspoken code of all cystics everywhere, I actually managed to do something productive last night and take myself to the NYC ER for an EKG re: my CF. And let me just say: WTF?!

Seriously, if you've ever had a really strong urge to watch tons of people having the worst day of their lives, go to a New York City ER between the hours of 11 pm and 3:30 am. Yikes. I can honestly say I've seen funerals that were happier and more uplifting than that place, largely because most funerals I've been to have not been 90% populated by people coming down from drug highs and alcohol poisoning. And frankly I'm not a major fan of judging others, but the guy with the HIV who had just been discharged 1 day prior after a serious infection and then decided to do "just a line or two" of cocaine that morning to give himself a little "boost"? Um . . . yeah, he might need to experiment with some new coping methods. You know, just my opinion.

The good news is that nothing is seriously wrong with my heart. All the doctors agree that while this arrhythmia is oddly persistent and annoying, it's not really dangerous. My heart is actually quite healthy, in fact, unlike the rest of me. It's also quite strange and ridiculous, which fits right in with the rest of me, so at least we have that in common.

The saddest and most sobering part of the whole experience actually didn't involve me or my attention-hungry heart though. One of the residents came over to chat with me a little about CF right as I was being discharged, and she mentioned that she has a friend with a 6 year old daughter facing transplant from this stupid disease. As if that weren't tragedy enough, the little girl just contracted cepacia and has been removed from the list, apparently, so please keep them in your thoughts and send some good vibes out to them, wherever they are. In all seriousness, CF is a battle we can never stop fighting . . . not until every single child born with this disease has the chance to recognize his or her full potential. Every CFer I know is a fighter, in his or her own way, and my heart goes out to all of them. All of us.

And don't worry, that's a perfectly healthy offering on my part ;)


  1. Hi Piper, I'm exploring this amazing CF blogging community. I'm a 30 yr. old with CF. I've been reading your posts and love your quick wit!! You have the spunk that is so helpful in fighting this disease! I've been on the transplant list in the past but am not on it right now. I am married and have a two year old son. My last tune up was in Jan. but I'm doing pretty well right now and am planning on staying healthy this summer : ) I am also on Aztreanam. Well, it's nice to "meet" you, I'll definitely be checking back! God Bless, Sharlie

  2. You need to tell your heart to chill out :) You have enough to worry about!

    That's crazy about that little girl, my heart goes out to that family...


  3. At least you got news that your heart is healthy, if not a little hyper. But I'm sure it is aggravating as hell!

    Praying for the 6 y/o with CF & Cepacia. That is one bug I am always, always terrified of Reilly contracting. That is one scary, bad, mean bug!

  4. Hi Piper,
    I am glad to hear that you heart is okay. How have you been feeling other wise? I am on the on and off IVs routine right now. Summer is always my worst time. I hope all is well.-Stephanie

  5. Aweeeeeeeeeeeeeeee OMG I'm so sad for that little girl :( I wanna cry! Stupid f*&%king disease!

    Glad to hear that your heart is not in any imminent danger.

  6. Piper, Your posts are always so entertaining to read. I'm relieved your heart is only slightly more annoying than bones lost under the couch! :D Seriously though, I'm glad it's nothing serious.

    Thanks for the heads up about the little girl. I'll send along some positive vibes for her, as well as you. Take care, ~Juliet

  7. After reading your recent blog, I received a wonderful laugh at your ER discription, since I also had a very insane ER expierience last week as well, only I was more afraid of the staff lol.. I must say though, that I also suffer from a broken heart, only my broken heart is not from your ordinary defects either, rather from seeing such a young person like yourself have to be such a fighter to begin with.... May God Bless You!!!