"Madame, bear in mind That princes govern all things--save the wind." -Victor Hugo, The Infanta's Rose

Tuesday, April 11, 2006

Life-changing device

In the photo to the right, I'm holding a pager ... your ordinary, garden-variety beeper. They're not quite so common these days, now that everyone has a cell phone glued to their hip, but if you've ever had a job that required you wear a beeper and be "on call", you understand the strange combination of respect and loathing you felt for this device. The main reason to hate it was for its intrusiveness. The damn thing could go off at any moment, any time of the day or night, and it didn't matter where you were or what you were doing when it did. You could be eating dinner, or watching a movie, or having sex -- it didn't care. You'd have to respond to it. You might feel like throwing it against the wall instead, but if you failed to quickly answer the page, sooner or later you'd have to explain why to your boss. Do that once too often and you might be out of a job.

It seemed that most of the time, it would go off in the middle of the night when you were sound asleep, interrupting the most wonderful dream with the reality that someone, somewhere, needed to talk to you about something important right now. Sometimes you'd be lucky; whatever problem they needed to contact you about could be solved quickly and simply over the phone, and you could then relax and go back to sleep. Other times, you'd have to get dressed and go in to work; something was seriously amiss that only you could fix. And of course, that was the flip side of it -- the reason you respected the beeper as well as hated it's goddamn insensitive electronic guts.

It meant that you were important.

Whatever particular knowledge or ability you possessed was so highly regarded by your employer, they gave you this device so that you and your skills could be available at a moment's notice. (Hopefully, you were paid handsomely for this as well.) Minor consolation that this may be, the point is that most people are at worst irritated and perhaps inconvenienced to have their beeper go off.

When this particular beeper that I am holding goes off, it will mean something entirely different.

It will mean that someone, somewhere, has just died -- and a doctor at the scene has determined that this person's lung(s) are available for transplantation.

It will mean that the hospital's computer has generated a "match run" of the most suitable recipients for this organ, and my name is at the top of this list.

It will mean that no matter where I am or what time of day it is, I will have to drop everything, grab a suitcase that is packed, ready and waiting by the door, jump into the car and get to the hospital (150 miles away) in less than three hours, and undergo probably the most complicated and extensive surgery known to modern medical science.

It will mean that, if for whatever reason things don't go well in the operating room, that my remaining life expectancy from the moment the beeper goes off could be measured in hours. There is about a ten percent chance of this, which is not insignificant odds.

Even under the best of circumstances, it will mean that when I regain consciousness after the surgery, intubated in critical care, my arms will be strapped down so that I'm unable to respond to the instinctual urge I am told that I will have to rip the tubes that will be keeping me alive out of my throat.

However, this moment will also mark the beginning of my recovery. After roughly two to three weeks in the hospital, I will have gained enough strength to be released. Rejection of the transplanted organ will be the main concern, and I will have to live within 30 minutes of the hospital for at least the next three months. For the first 30 days after my release, someone will have to be with me every moment around the clock, in case something goes wrong. I will have to be on a regimen of anti-rejection medications for the rest of my life; my body will always consider my new lungs to be "foreign objects" and fight to expel them, so my immune system must be suppressed to prevent this from happening. This will open up an entirely new set of problems for me, as I will be much more susceptible to other opportunistic infections that "normal" people shrug off with perhaps a slight temperature and a couple of aspirin. The flu could literally kill me.

But it will also mean that after I am fully recovered from the surgery, perhaps six months later, if everything has gone according to plan, I will be able to breathe normally, without supplemental oxygen, for the first time in years. Getting up and walking to the bathroom will not make me out of breath. My world will no longer be limited to the 50-foot radius of my oxygen hose. I can ride a bike again. I can walk along the beach, or down the railroad tracks like I used to do when I was a kid. I won't have to park in a "handicapped" space any more.

In short, I will get a second chance at life.

How long this will last is anyone's guess. Lung transplantation has the poorest post-surgical survival rate of any major procedure, decreasing roughly ten percent each year; even heart transplant patients fare better. If I am still alive five years after the beeper goes off I will be considered "average"; I'll get perhaps seven or eight years if I do well, and ten or more if I am extremely fortunate. But those are way better odds than I have right now.

That is what this beeper represents to me. It's amazing to realize what power this little hunk of plastic and electronic parts has over my future. It scares the shit out of me and fills me with hope, all at the same time.



  • At 4/11/2006 11:26:00 AM, Blogger Janelle said…

    It's such wonderful news to hear about your beeper. It even scares me a little to think about that thing going off at any given moment sending you down a path that is forever changed...hopefully for the better without incident. You probably won't have time to blog about it when it happends so you will have to show Mrs Toast how to do it so she can let us all know. You and Mrs Toast are in my prayers each night praying for the best.

  • At 4/11/2006 01:20:00 PM, Blogger Mr. Toast said…

    Thanks, Janelle -- your support means a lot to me. Yeah, I'm trying to prepare Mrs. Toast to post updates here for all my Bloggin' Buddies when the time comes. The good news is that it shouldn't be for a while yet. I'm still listed as "inactive", as at the moment I'm in better shape than most other transplant candidates. It will happen sooner or later, though. Like I said, I may be scared (who wouldn't be!) but optimistic. Please keep the prayers coming -- they've been working great so far! :^)

  • At 4/11/2006 01:27:00 PM, Blogger Janelle said…

    I know this is off topic, but I would like to know how I can put a link on my blog for the PCOS support website.

    ---------- 0 ----------
    Janelle - it's easy, you just need to make a minor change to your template. E-mail me at "mrtoast(at)cox(dot)net" with your return address and I'll send you the details.

  • At 4/12/2006 10:02:00 AM, Blogger April said…

    Oh my goodness... Your post made me feel all sorts of different feelings. First I happy for you, because the beeper means that hopefully you will be getting new happy lungs... then I felt scared for you because of the thoughts of what "could" happen, and then I was anxious because I really hope your beeper goes off sooner than later, and you can begin working toward those walks on the beach... but then I hope it doesn't go off soon, because your right, you life could be shortened from years to hours.

    But, we're all here for ya, and I'll be thinking of you every day until your back from your long recovery. People with upbeat attitudes and postitive outlooks are more willing to do well and recover faster... so I'm really glad your that type of person.

    Thanks April. I go through these same conflicting emotions pretty much every day -- often within minutes of each other!

  • At 4/17/2006 06:24:00 PM, Blogger Schnozz said…

    Wow. Good luck. I didn't realize you were so ill. I'll be thinking of you and willing the pager to beep/not beep, depending on whatever your hope/terror balance is at the time. :)


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