October 29, 2013

Maintaining control while letting go

Pulmonary rehab, Day 16.  How does one maintain control while letting go of it?  This has become the central philosophical question for me.

I experienced a hard low today in rehab, by which I mean that my blood sugar went below 50.  I had begun the day by going to rehab early, ostensibly to fit in the parts of the required workouts that I wouldn't be able to fit in by the 4:30 class if I only arrived at my designated 3:30 start time.  I ended up doing all my workouts (weights, bike, walk) before 1:30, essentially using the relatively uncrowded heart-patient time slot to ease up my day.  (I am pleased to report I marked another record distance on that stationary bike - 4.1 miles today with an increased resistance level for 15 minutes out of 20.)

Then I made the mistake of going to lunch.  I needed to refuel so I could come back for a little more workout before class.  So I opted for two bean burritos and a cherry limeade sparkler.  Now, the limeade is 44 grams of carbs, according to Taco Bell's website.  A bean burrito, 56g.  I calculated 156 grams of carbs and divided by 9 (as I recently bumped my insulin to carbs ration downward from 1:7 to 1:9).  I injected 17 units of insulin.  Then I went back to rehab.

After being denied permission to try jogging on the treadmill, which I feel up to at least trying, I was told I could walk on an incline on the treadmill.  A different kind of workout from everything else, so why not?  I did 20 minutes with that, feeling good, then joined the floor class in progress.

Or tried to.  Five minutes after lying down and in the middle of some leg lifts, I started feeling "off".  The hot and shaky I attributed to having just come off the treadmill.  But now my vision was starting to change and I had that weird feeling inside that signals a diabetic low.  And when your vision begins to go, you know it's bad.  So I stood up and zombied my way over to my bag o' holding and got my meter and strips out.  40.  My BG was 40.  And probably dropping.

So I sat there for a while, first gobbling a snack pack of marshmallows, then some juice and crackers that the staff brought me, testing my BG every ten minutes.  The staff is very vigilant against diabetic lows here; the won't allow you to work out if your BG is below 70.  40, 55, 63...finally 91 - just in time to clean up the floor mat and put away my weights.  Great.  Thanks diabetes, for making me feel like someone who can't manage his condition.

I need to get control over these lows.  And I will.  I have the knowledge and tools to make that happen.  But even with the best control, things go wild sometimes.

Before I left for the day, I chatted with several patients, all of whom are post-transplant.  One is awaiting her second transplant, after 16 years with her first pair of lungs.  I told her my concerns over the possible gastric problems post-transplant, especially being concerned with not being allowed to eat and being forced to get a GJ tube which, while common in CF patients, is not something I'm particularly cool with.  It represents failure: failure to gain or maintain weight; failure of the stomach to empty; failure of the esophagus to "wake up" post-surgery. These kinds of things.  For the record, I'm cool with an NG tube, which is fine if the stomach is working and only the esophagus is a problem.  But I digress.

As I'm going over my concerns about post-transplant problems and even mid-surgery complications, she stopped me.

"You have a lot of education, but you're overthinking this."

She's right, of course.  Transplant and the course of recovery right after are something I actually have very little control over.  And why did I come to Duke anyway, if not because I trust that these people know what they're doing and will do right by me?  The fact is, my best control over how I do AFTER transplant is what I'm doing BEFORE transplant: gaining as much physical fitness and body weight as possible.

And that's it.  I've spent a lifetime tightening control over my own life and increasing my compliance with my prescribed health regimens in order to stave off transplant and death for as long as possible.  But I've reached the endpoint of what that degree of control can do for me and it is time to turn my body and life over to people who I quite simply have to trust.

Giving up control over my healthcare is entirely antithetical to the very strategies that have helped me live this long.  But today, I was reminded by plummeting blood glucose that control is often and illusion. And it can only take me so far, anyway.  Letting go is the next best step toward health, toward regaining some control over my life, and toward happiness.

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