January 10, 2014

Survivor's Guilt

1 MONTH post-transplant; Pulmonary Rehab #12.

Today's bicycle and walk involved meditating on some sobering realities.

Recently, a friend sent me a statistic put out by the Cystic Fibrosis Foundation: that there are only 1300 of us CFers over 40 (out of 30,000 in the US). I really couldn't give credence to this. I doubt CFF stats as it is. It didn't jive. I know PLENTY of CFers over 40 - perhaps 2% of that statistic - 26 people or so. And I certainly don't know a proportionate number of CFers overall, 600, do I? But then, birds of a feather.... and I am moderator of a cystic fibrosis forum that attracts older patients as it is.... Hrm.

Then I got caught up in a FB thread in which the originator asked all CFers who could see the thread to post their age and location. There were hundreds of replies. And they're all kids. I mean...the vast majority are under 30.

There were only two replies from people older than I.

The median age of expected survival is now 41. But that's EXPECTED survival, not what's actually happening today. Could I really have survived so long as to be in such a small minority? 

I think of my close friends. Piper Beatty would not have lived into her 30s without a lung transplant. Denise Horgan would not have made it to 40, though thank god we'll get to celebrate that milestone next November! Every single CFer I personally know and have met in person is younger than me except for Jerry Cahill, who is 56, and Lynda Jensen, who is 47. She's the only older CFer than me in rehab.

I begin to realize that I have survived not merely a lung transplant, but a deadly disease that takes my compatriots way too early, before they've lived even half their lives.

And speaking of lung transplant, there are some who haven't come back. And they're not in the hospital anymore either. There's only one conclusion. There are some pre-tx who come at 3:30 and have been doing so since long before me and will be there long after me, waiting for their call. They have antibody issues, or similar, and they wait and wait. You may recall me talking about the prophetic Weird Sisters encounter - they are among the ones I think of as the Stalled Ones. They are in a very, VERY real Purgatory. Why am I one of the lucky few to breeze in on a short timeline, get listed, get transplanted, recuperate well...?

And recuperation...I'm real glad to have set or equaled some kind of record for leaving the hospital (9 days), but Piper is now in week 3 of her recovery, Denise 9 days still in the ICU, and other less close friends (but still important to me)... Jeannette in ICU for over a month, Kyle still in stepdown almost two months out... Why didn't things go easier for them? Don't tell me it's because they weren't as prepared or as fit. Denise sure as hell was, but she got a rawer deal. Speedbumps appear out of nowhere that seem capricious and no more predicatable than the roll of a die.

How have I done so well where others have .... not?? My accomplishments are cruel laughter in the face of their miseries. Ironically, to play the full hand dealt me and give full due to my donor's gift means I can't just mask the good numbers or hide myself away. Though it means thumbing my nose at my less fortunate peers, I must be all I can be. Hell, this weekend I'll be spending most of my time drafting. FOR MONEY. Who the hell a month out of a death's-door operation goes back to work??

But maybe I can carry this forward, somehow press the powers that be to look into new avenues of treatment, so that a whole lot more of us will be above 40. For instance, I was wondering if, since GERD seems to affect newly transplanted lungs, might it not have had an impact on my old CF lungs? Is my GERD ultimately responsible for tipping the balance and overwhelming any gains made by exercise and antibiotics? If so, then should the standardized CF treatment look to test for GERD on a regular basis in adults with CF and when found, should we be doing fundos or LINX on CF patients before their lungs deteriorate??

Today, I am reminded I have a responsibility not only to my donor and myself to make the most of this gift, but to all my cystic brothers and sisters, now and to come, to try to find better treatments while we also search for a cure. I have to. Because I have survived.

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