January 14, 2014

A View From The (Pelvic) Bridge

Post-transplant day 34; pulmonary rehab #13.  

I spend a lot of time looking at ceilings.  ICU ceiling, stepdown ceiling, my bedroom ceiling, the very nice ceiling at rehab during floor exercises.  That one reminds me of a gold and ebony river of tile, with fountains of light dotted throughout.  I find peace and harmony in a well-installed ceiling.  It's a matter of perspective, really.

Rehab is getting...repetitious.  Which is to say I'm starting to find it boring; it has always been repetitious!  But I am finding I'm using my boredom to attempt to go further, faster.  The problem is, my body isn't quite building up in the strength department like it is in the speed and endurance departments. So I use the latter to fuel the former, distilling strength from dull repetition. Laps.  Laps, laps, laps.  Or, seen another way, winding up.  (For what, I'm not sure.)  It's a matter of perspective.

I'm wanting to do better, faster than I currently am; not just in rehab, but also with my PFT scores.  If I don't blow the numbers I was expecting, I am disappointed.  Today, I'd hoped to blow an 80% FEV1 and at least 70% FVC, but fell short of both.  Never mind that my PFTs were technically up a couple of points from last week - I still failed to meet MY goal.  In a similar vein, Dr. Reynolds added another med, a beta-blocker. This runs counter to my goal of shedding some of these meds that I'm assured are "temporary".  I'm disappointed in myself somehow, in my body... Of course, people don't understand this failure. They see the PFTs, which are great for being five weeks out, and see an incredible success.  They see the right medicine being prescribed for good reasons.  But I want more.  So victory looks like failure. It's all in how you see it, it's in what yardstick you're using.

But the change of view isn't always negative.  I had a big shift in perspective Friday when I met my next surgeon, Dr. Hartwig, who will be performing a procedure to stop reflux.  I had an image of a certain kind of surgeon, based on little (or perhaps was an amalgam of Drs Lin and Davis), and was prepared to have to fight tooth and nail to get him to agree to a LINX instead of doing a Nissen fundoplication.  But the night before the meeting, I looked on the manufacturer's website for centers that do LINX.  The only one listed for North Carolina? Duke.  And the only surgeon listed?  Dr. Matthew Hartwig.

I about fell out of my seat.

Then, the next morning, after talking to a PA, a tall late-30's-ish man in an impeccable suit and Italian shoes strode through the door.  I had no idea why one of the hospital's lawyers needed to talk to me.  "Hi.  I'm Matt Hartwig."

Again.  Butt, meet floor.

And...he's with me.  From the outset.  He heard of my interest, has performed the LINX installation many times, thinks its appropriate in my case, etc.  His PA even had paperwork lined up to get a 3rd party advocate on the case to get this pushed through the inevitable insurance denials.  Once again - shocked!

I walked out of Duke on Friday with a whole new appreciation of the lung transplant team.  They are stern folks and unbending in some ways (if you have GERD, you WILL have an operation for that).  But within a framework, and once through the looking glass of your transplant, the doctors and staff are willing to work with you as a partner, not just as a patient.

During floor class today, as I lay staring at that beautiful ceiling and grunting through ankle-weighted exercises and pelvic bridges, I thought over Mom's next adventure.  She has been a good caregiver so far, but we both admit her load has been relatively light; the job frankly easy, as these things go.  Now Mom is proposing to a close friend who also needs lungs that she come to Duke and Mom will be her primary caregiver and her husband, who must remain in Florida to keep working to keep the insurance, will be secondary.  It's a good plan. Noble even.  But I worry that Mom could be getting into a hell of which we have no idea.  Even some of our long-term ICU stay acquaintances have had it easier than what COULD HAPPEN.  Mom may be in for a massive shift of perspective, too.

Today, I am reminded that sometimes people aren't what I expect them to be; that there's a level of strength and compassion that bubbles to the surface when it's most needed.  And that there's always more than one way to see things.

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