January 2, 2014

Impotence and Rage

I have no business writing this post this evening.  To put a finer point on it, I have no business writing about ME this evening.  My thoughts are with my dear friend Denise Horgan, who is lying in the hospital 28 hours post-transplant in ICU, on ECMO, with failing organs.  The new lungs are good, but cystic fibrosis and the attendant antibiotics have so poisoned the rest of her body... and there's nothing I can do to help her!  The feelings of impotence come flooding back...

More than a month ago, as I battled CO2 buildup while trudging around the track at rehab, I reflected on how impotent I felt.  And that that impotence had several facets, some of which persist through to today.

First, there is the obvious impotence of strength.  Before transplant, I was losing endurance rapdily.  Tasks that would have taken me 10 minutes a year ago now took 20 or 30.  Things I could have lifted easily, I could no longer lift.  In rehab I was able to gain some of that back, but once the CO2 kicked in, it started to fail again.  But I also didn't have the strength to prop myself up.  I didn't have the strength to be "the patient" to my family.  I let Mom handle communications with my family.  I just didn't have the strength to first get the facts of my life straight with mom and myself and THEN repeat them over and over on the phone.  I barely had the strength to keep in touch with the two women I've been going through this hell with, Piper and Denise.

Speaking of whom, my interactions with them highlighted the second impotence: inability to help.  If I could lay waste to the world and overturn mountains in order to find them lungs, I would have.  If I could have rendered...well, ANY significant help, I would have.  Unfortunately, physical and financial circumstances made that kind of help impossible.  The only help I've been, really, is acting as an advance scout of the Duke lung transplant program.  Maybe that helped in some small way, but...it does nothing to prevent their suffering or their pain.

There was a third type of impotence born of my own drive: inability to fulfill my own expectations.  I couldn't meet the goals I set for myself.  I kept falling short.  And shorter.  Years ago, I saw the need for a transplant coming and determined to find a spouse long before I needed it.  Someone who could stand by me in my moment of need, yet not someone who had a need to fill the role of nurse or mommy.  So how does that turn out?  I move in with my mother to be my caregiver for the duration of this odyssey.  Not a proud moment for a 42 year old man.

Fourth, impotence against the system to mold it to one's own needs and wants.  Especially here at Duke, which has a lot of "we always do this" and "we never do that" in their practice.  In a corner of medicine where individualized programs of care are nowhere more clearly needed, there's too much boilerplate medicine in evidence.

And today all of those points of impotence came flooding in, but in new ways.

For instance, strength, flexibility, and speed are returning - but I was told directly by a therapist not to try to be too big for my britches.  I can't lift more than 8 pounds. I can't drive.

I see some rehab friends who got transplanted finally returning to rehab after quite a while in the hospital.  Mary Frances and Shawn.  And as motivating as I was to them before all of us got our calls, I can't seem to motivate them now.  Impotence of persuasion.

Two closest friends - sisters really - lie in the hospital.  One recovering from her transplant with more hiccups to it than I'd like, but with a lot of spirit when she's awake.  The other is in ICU with great lungs but failing heart and kidneys and is septic.  She is....no, I'm not going to use that word yet....but she is in trouble.  And I am COMPLETELY FUCKING HELPLESS to stop her deterioration, or to render any aid to either woman.  I ask people on Facebook to pray for them because I know they believe in the power of prayer.  And if they believe it works, then it works.  *I* don't know if it works.  (On the other hand, we are all three transplanted in a very short amount of time, so maybe prayer works.)

So here I am in rehab, walking laps, shortly after New Year's, experiencing what can only be called an unqualified success, yet frustrated and anxious to the point of tears and depression because I can't do a thing to bring my sisters along with me.  I can't call my transplant truly successful unless Piper and Denise's transplants are also successful.  Until I see them both in rehab, both preparing to leave Durham once again strong and healthy, my own recovery will be missing a piece of the puzzle.  And this is the only piece I can't control or affect in some form.

All of this makes me angry.  All I can do is channel that anger back into my efforts in rehab.  I walk laps faster, push through the pain.  30 laps in 25 minutes. A mile and a half.  The therapists are impressed, but I'm not.  All I feel is impotent.

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