November 9, 2013

The most common questions

Pulmonary rehab, Day 24.  Friday of Week 6.

I should have published yesterday, right on Day 23, because that is the magic number held up like a small golden idol by everyone on the transplant team.  In much the same way the alien dolls in Toy Story worship and run their lives by The Claw, the transplant team members constantly refer to the 23 days in rehab.  Not 21.  Not 22.  TWENTY. THREE.  Then you graduate and keep going to rehab until transplant. 


So I graduated at nine sessions, right?  Yes.  Well, I am a smart guy and can continue building strength and endurance on my own, which I have.  But in a twist of circumstance, what should finally happen on exactly the 23rd day of rehab?

I got listed!  Yes, after a couple weeks of the sweating it out over the small points, such as an unreactive HebB surface antigen and a high white blood cell count, subsequent testing has removed any obstacles and all lights went green.  As of 3 p.m. November 7th, I am on Duke University's lung transplant list. 

When telling people this, the most common question I've gotten over the last 48 hours is, "Are you excited?"  This is closely followed, or in some cases substituted, with, "What's life like being on the list?" and from less transplant-knowledgeable acquaintances, "So when is your transplant scheduled?"

OK.  The first question is totes legit.  I would probably be excited were this not my second listing and were I not already on Columbia's transplant list for almost 11 months already.  But much as one's fingers stop hurting after about the 75th hour of practicing guitar, one does not get excited over a minor change in an existing transplant status.  What is exciting - or to be more precise pleasing - is that now I am being listed at an institution with much shorter waiting times, equally good outcomes, and a much more pleasant commute.

I'm just not a man of wild mood swings or over-expression.  I didn't whoop and hollar the first time I got listed, why would I this time?  It is promising and heartening, but I'm not going to pop a blood vessel over what is, after all, merely admission to the entry line to Club Transplant; it is a whole 'nother step getting into the club itself!

Second question, what's life like on the list?  Well, same as it has been for almost a year: don't travel more than an hour from home.  Have your cell phone charged, on, and with you 24/7, don't make any  commitments to projects you can't afford to bail out of, and make sure your caregiver can also drop everything and come running when the call comes.  This is a HUGE impact on life-style, although coming from the arts, most of my projects are of relatively short turn-around times and I rarely shut my phone off anyway.  Mostly, being on the list involves being tethered to your caregiver - or rather s/he to you - and that must be terribly discomfiting to them.  I feel bad for Mom, sometimes, because my medical status forced her to move to Brooklyn for a year.  And now Durham.  (She likes Durham, but...could we have skipped the year of NYC perhaps?)  The weekend trips out-of-state she likes to take to see family in New Orleans or Cincinatti - not happening now.  Not until a month or so after transplant.  She is as much restricted as I.  THAT is the bigger impact of being on the list, I think. Being listed doesn't just affect my life, it affects my caregivers' and family's lives as well.

Lastly, when is the surgery?  Well, when my donor is done with his or her lungs, I suppose.  But nobody knows when that is.  I have a hard time refraining from just asking "are you stupid?" when I field this question but then I remind myself it isn't stupidity talking, it's ignorance.  Except for transplants, all other surgeries ARE scheduled.  And even some transplants are, if it's a living donor!  So it's not a dumb question, but rather one of poor education.  The hard fact is that people are constantly dying in a variety of ways, and few people do so on a published schedule.  Sometimes, a person young enough will die in a way that leaves their body on life support, but with no brain function.  At that point, if the donor and the donor's family have said yes, viable organs can be retrieved and passed on to people who desperately need them.  The lungs I will eventually get are, right now, still out there somewhere, breathing, laughing, crying, walking, and talking along with the whole person who was born with them.  An accident will happen and a dozen other factors will fall into the right place and the right time for me to receive those amazing, precious lungs. 

In the meantime, I continue to walk around that track at rehab.  Waiting. Walking. Waiting.

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