Friday, October 2, 2009

Hung Up

Okay, so this might not come as a surprise to many people given that it is, in fact, 2009, but tonight I thought I'd share an interesting little fact about me:

I have a cell phone.

Yep, that's right. Much like 90% of the general population, I do actually have a cell phone, and, much like 90% of the population, I consider my phone to be a useful tool to help me stay connected to friends and family (and, okay, maybe occasionally some cute guys met in bars, but do we really need to get into that right now? I didn't think so.).

Or, you know, I DID think of my phone that way. Once upon a time, that is, before it magically leapt from its position as a simple, convenient, little electronic device to suddenly become a majestic machine of semi-deity-like power.

In other words, before I got listed for transplant.

Let me explain. See, I'm told that most transplant centers used to provide patients with a beeper to be used solely for THE Call, but those days are apparently long gone. Or at least they are up here in New York, which means that the only thing standing between me and THE Call is, you guessed it: my cell phone. (Actually, to be fair, the transplant team actually has on file not just my number, but also my mother's cell phone number, my apt landline number, and my sister's cell phone number -- any one of which could be used for THE Call should that an organ actually become available. But I'm told they'll try my line first, and I hope to answer.)

So maybe I'm crazy, but this knowledge -- that my phone could ring at any second, and that the person on the other end could have such life-changing news -- has completely changed my relationship with the little bugger. Whereas before I turned my phone off during movies and plays (thinking that even the vibrating sound would be annoying to others) I now simply silence the phone and hold it gently in my lap throughout the show (ignoring, of course, the fact that a ring would involve both vibration and a lit-up screen, and would be 100% guaranteed to annoy basically anyone within about 20 feet). Honestly, two nights ago I sat through a Broadway production of Othello with the d*mn phone resting on my leg the entire time, all the while worried about exactly how I would get out of the theater and home if THE Call did in fact come. (Actually, since the production was pretty lousy, I was also concerned about what it would be like to have to go straight from bad Shakespeare to transplant. I have to say it wasn't a very pleasant thought.) Even worse, my transplant team made it clear that THE Call could come from any number, especially since they often come at night and the coordinators might be on their cell phones. Great. This means that instead of ignoring all numbers not pre-programed into my caller ID (see earlier comment about guys in bars -- I find I sometimes just don't really want to actually talk to them later), I now absolutely HAVE to answer. Has this made me a better a human being? Possibly. Unfortunately, it has also made me an easy target for both telemarketers and chatty strangers.

Ironically, the only calls I CAN ignore are calls I know are from friends, and I honestly hate to do that. So I'm basically at the mercy of this little machine, and I've become surprisingly good at reacting to its whims and needs. Yesterday, for example, I literally took a flying leap off the back of the couch to reach the phone, which was cleverly positioned on the counter behind me, before it stopped ringing. Several days before that I stubbed my toe racing out of my bedroom -- eyes still bleary from my afternoon nap -- to find the thing buried somewhere in the depths of my purse (I missed that one, but it was just an insurance company rep anyway). When I go to gyrotonics, which is supposed to have a yoga-like calm in the studio, I selfishly leave my phone right by my machine, ringer turned on and volume up. Sure, my trainer knows why I do it (and she happens to own the studio, so it works out), but that doesn't change the fundamental fact that I'm breaking the house rules.

I also never really realized how LOUD New York City is until now -- I find myself removing my phone from my bag at random times or in restaurants just to ensure I don't miss THE Call because some trendy new SoHo eatery just has to play its hipster music at ear-splitting levels. I can honestly say that I rarely noticed things like that before I developed my phone obsession -- as a New Yorker, I actually prided myself at being able to eat in the loudest place around without ever actually acknowledging the noise level. My out-of-town guests would scream themselves hoarse trying to make themselves heard from across the 2-foot table and I would simply smile, safe in my belief that their red faces and flapping jaws were simply a sign of their awe over my magnificent City. Now suddenly I find myself dragging family and friends out of the newest hotspot, shaking my fist at the hostess and muttering odd things under my breath about "hearing myself think" and "just no way to run a business."

Okay, fine, not really, but you get the idea.

I guess it just seems like lately I've been adjusting to a whole lot of what I consider "new normal." Not working, lower O2 levels, more doctor's appointments, and even the joys of a PICC again after so many years -- those things are all somehow becoming "normal" for me now. But the weirdest part for me is the small details: having a bag packed for transplant and sitting in my closet, knowing that everytime I eat sushi (which I happen to love, by the way) it could be the last time ever, and, yes, even the way my heart pounds each time I hear that silly ringtone. It's all part of adjusting and adapting to this idea that my life has changed, and that it's actually going to continue to change -- my "normal" in 6 months or a year will (hopefully) be different than my "normal" now.

In the meantime, though, it's definitely time for me to go to bed and get some sleep -- with my phone on the nightstand, of course.


  1. I have my phone with me at all times and I am not even listed. Literally, even when I go pee (not at work of course lol).

    The dam thing really is a wretched little device that has taken over and I can only imagine the way it feels for you!!!!

    Don't hurt yourself trying to leap for that phone...I'll make you a baggie that you can keep on you at all times haha!!!

  2. Piper I had the same thing happen to me when I was first listed. I took my phone EVERYWHERE including the shower!! everytime it rang I would feeling my heart rate go up until I looked at the caller ID and realized it was just my mom or a friend. Now 15 months later I am still on the list and while I still take my phone with no matter where I am...when the phone rings now I don't even think about who it is I just answer it. Hopefully you wont be on the list that long and hopefully I will get my call soon!

  3. I have another idea. Get a pre-paid phone just for "the call." Problem solved?

  4. What about getting the number they will call from and setting a ring tone for "The Call" number...or you could set all of your family and friends to a certain number, so you at least know they're the ones calling.


  5. I know the feeling. I feel like I always need to explain or remind people why I am being rude and keeping my phone on. I hate always needing to have it with me.

  6. The cell phone thing would never work for me because our house is in a DEAD ZONE. Yup. A text message can get through (sorta) but not a phone conversation! I hope your new found zest for getting outside and keeping busy doesn't keep you from blogging too much though! You're entries are always totally entertaining. {{Hugs}} ~Juliet

    PS - I think the PICC line stitching thing depends on the center. My first 2 PICC lines they didn't stitch them, but my 3rd (done a different place) they did stitch them. Now I've got this really wierd looking "3-pronged fang" scar on my arm.

  7. I never get calls from any companies on my phone, really only friends or family. As in other instances I usually just leave my home/landline phonenumber.
    Only other people that had my mobile number were my hospitals really. And they always call anonymous, so I would kind of know what it was them.

    My call came during the night and on my landline phone. At my center they try your home number first before trying your cell. This call came at 4.45 am. So I really didn't even have to look at the phone but only at the clock to see who was calling.

    I do have to say I was anxcious every time the phone rang for the first 6 months or so. After that it got better.

    I also took my phone everywhere, also to shows and such. I always had my story to tell the people around me ready in my head.
    I would tell them that I had to get this caus this was my call for my transplants, so I could have new lungs that would save my life. I always thought no-one would react to that, but hopefully just finally say yes to being a donor themselves :-)

  8. Hey Piper!

    My transplant was 9 1/2 years ago -- we were given a pager... It wasn't actually from the hospital -- it was donated for use by a company. I've been aware of centers that have had similar relationships with generous companies or individuals... We were told pagers were the way to go because there is a much greater range, and less in the way of "dead zones" that Juliet mentioned... And -- I believe that they're relatively inexpensive. At least they were 12 years ago...

    Ronnie mentioned coding their number with a special ring -- that would be a good idea, however, they may call you from a dozen different numbers and some of them may even be unknown to them. It's possible that a procurement coordinator could call you from a donor hospital. Or any number of nurses or doctors might make the call, though it is generally coming from a particular person -- if that person gets tied up, "the call" may be delegated...

    And I agree with others here -- I had it with me at all times. Bathroom, naps, wherever I was sitting at home, it was next to me... And when ever I left, there was a big note with BEEPER on my door to remind me to take it...

    And it's nice that your yoga instructor makes accommodations. I found that pretty much everyone did -- restaurants and the like -- you also have to watch for places, like fancy restaurants or auditoriums, where they've somehow blocked signals. When they see you suckin' O2 and you explain to them you're waiting for "THE CALL" -- people are often quite sympathetic, and rules get bent... It's your life hanging on that little device...

    It's also important that your Mom and Sister keep their phones with them (and that all three of you are not in the same dead zone with no signal and assumedly away from your other contact point, your home...) The guidelines at our center was that they would call your home phone first, then your pager, then subsequent numbers, then send the police or do what they need... (They've sent the police on a few occasions that I'm aware of -- one kid went to a hockey game and left his pager at home -- they ended up at the stadium paging him on the public address system... It made the papers a few weeks later...)

    It is sometimes difficult to explain, like CFSteph mentioned, why you need to have your phone with you and on -- but it can also be an opportunity... You're waiting for a call about a gift -- about a gift that will allow you to hang around on this planet for a while longer... It's a good moment to help them understand the true importance and goodness surrounding organ donation -- and the incredible need and shortage...

    You'll get through this, and it will be amazing...

    Love, Steve

  9. I was like that too with the phone. I jumped every time it rang, especially the week between the "dry-run" and the actual transplant. I kinda turned into a hermit, not wanting to leave the house much, but was only listed for 2 months. I'm sure I would have gotten more adventurous if I was on the list longer. Best of luck and you'll be in my thoughts!!

  10. Yup, my blackberry and I are quite the same. We do get a pager in toronto, but they say that it's their last resort. They will first call your phone, then page you.Because of this I never know where my pager is. I find it to be such a pain, esp since I am always on my blackberry.
    Now I can't screen the 'private number' calls anymore also!