Wednesday, April 18, 2012

My broken stomach, my broken heart

Right now I'm trying really hard not to think about my superior vena cava.

Clearly, I'm not doing a very good job.  I don't usually spend time thinking about my superior vena cava (or trying not to), but at the moment, I can't seem to forget about its existence.

Why?  Because, at this moment there's been something in there, the tip of a peripheral intravenous central catheter (or PICC) line.

Why can't I forget about my superior vena cava?  Because, at this moment, for the past two weeks, there's been something in there, the tip of a peripheral intravenous central catheter (or PICC) line.

It has been two weeks since I have been on total parenteral nutrition, or TPN.  For those of you who don't speak medical jargon, that means that I have been receiving most of my nutrients through the PICC line.  Every evening I carefully hook a bag of white liquid up to a pump and some tubing, which I then carefully and, trying to be as clean and precise, trying to maintain as much sterility, as possible, I hook up to my PICC line.  This is what will be feeding me, what will be keeping me alive for the next 2-6 months while my gut will (hopefully) rest and reset itself.

I've barely been ingesting anything by mouth at all--what I do take in is mostly clear liquids.  There've been a few crackers here and there, some soup with rice in it, but mostly it's tea, juice, and broth.  (And the requisite pills.)

This is my first time on TPN, and it is almost certainly not going to be the last.  To be honest, I feel lucky I've made it this long without it.  Most people with GI motility disorders who have mito have to go on it at some point in their lives.  Many children with mito are put on TPN soon after they are born, never able to drink their mother's milk or eat normally.

I'm finding it an incredibly relieving, if somewhat heartbreaking experience.  I've only thrown up once since being discharged from the hospital--previously, it was nearly every day--as I no longer have to try and force myself to eat enough food to sustain myself, which my body physically cannot handle.  I've been in far less pain and I've been much more energized.  I've grown accustomed to the quiet whirr-whirr-click of the pump as I lie in bed at night.  At times, I almost find it comforting, a confirmation that even if my body parts can no longer do their job, medicine can pick up the slack, and my body can be sustained through science.

And now we come to the heartbreak.  Not only do I miss the social and pleasurable aspects of eating, but I'm finding myself mourning for my lost ability.  Losing my functions is nothing new for me.  I've been slowly degenerating since the age of seventeen, losing one organ after another.  There is something so essential, so primal about hunger, about the urge to eat, that I'm finding the loss of ability is difficult to deal with.  The plan is for this to be temporary, short-term (up to six months) but it very well may be permanent.  There's more grief here than there's ever been anywhere else.

But despite all that, I'm managing to stay fairly positive.  I feel hope for the future, whatever it may hold.  And I'm trying to find up sides to the situation.  For instance, I’ve found that when life gives you PICC lines, get cute PICC covers to shield them. 

 I'm getting used to the routine of setting up the TPN and taking care of the line, and it's no longer a source of immediate fear for me.  But not all of the aspects of TPN are getting easier.

Today I had my dressing changed.  Until the PICC line is removed, my Home Infusion Therapy (or "hit") nurse will come to my house once a week to take my vitals and bloodwork, ask about my progress, and change the dressing.  Changing the dressing is a terrifying experience for me.  While I've grown moderately comfortable with the line--when I can stop thinking about my superior vena cava, that is--I cannot overcome my feelings of defenselessness.  Each time I find myself sitting with my arm crooked in an unnatural position while my masked nurse intently wields adhesive and antiseptic on the opening of my vein, I find it difficult not to tremble.  I am completely exposed, at my most vulnerable, my heart laid open to any assault by microscopic invaders, my soul laid bare for anyone to perceive my weakness.

I hold my breath and look away.  It feels as if the change is taking forever, but soon she is finished, taping up the site and replacing the lumen extensions.  She takes my blood and, unusually, I feel it coming out of my vein.  The catheter is long and I am small, so there's a good 27 cm that the surgeon left outside of me.  The freshly-scrubbed skin that the line is taped against feels cold, and so as the blood rushes out of my vein and into the catheter, I feel the warmth of it against my skin, reminding me of its purpose, to sustain life, my life--a purpose which will it will no longer be able to fulfill.  How different the blood feels, leaving my veins, than the chilly mixture of proteins, sugars, and fats that I have to hook up to every night and yet their function remains the same: to keep me alive, and healthy.

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