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Fear of Getting What I Need

Last week my TB skin test was negative, which came as no surprise.  But it put me one step closer to the pancreas transplant.  That afternoon I enjoyed having dozens of people like my status update on Facebook when I shared the news.

That same day a young girl in Philadelphia made national news for receiving a lung transplant from someone over the age of 12 after a judge made a ruling to allow it.  It was great news and I was happy for her.  A lung transplant must be more intense that a kidney or a pancreas.   Maybe I had too much empathy for her, trying to put myself in her place, because I was gripped with panic.

This transplant is really going to happen.  I’m going to be cut open yet again for another surgery lasting several hours.  There are so many things that could go wrong.  Unlike last time, I’ve heard some horror stories about others who weren’t as lucky as I was the first time.

The new pancreas may not work.  Or it may only work for a short time.

After having two transplant surgeries, I’m only too familiar with the discomfort of being in the hospital.  There will be an IV in one arm and no telling how many tubes and wires attached to my body in various places.  Even if my strength improves fast enough for me to move, I’ll still feel like a fly caught in a spider web.

Then there’s the waiting, hoping each time the phone rings its THE CALL.  Unlike last time, I have a cell phone now.  I’ll have to decide between turning it off and missing the call or leaving it on and risk having it ring at awkward times.  I can’t see well enough to use a smart phone.  My flip phone is either on or off.

For a year after the big event, I’ll have a greater risk of organ rejection.  And I’ll be on high doses of anti-rejection medications, including prednisone, which is a steroid.  Like most people, it makes me big, hungry, short-fused and not at all pleasant.  This isn’t going to be fun.  It’s a surreal type of stress that gradually builds to an intense peak which will happen at a time no one can predict.

Here’s an excerpt from my book.  It describes what it feels like to wait for a donor.

One thing I couldn’t put out of my thoughts was the knowledge that someone had to lose their life before mine could go on.  Our lives would intersect at some unknown point in the futurea date neither of us could predict.  I hoped that whoever he or she was, they were doing everything they wanted and needed to do.  I hoped that person was happy living what they didn’t realize would be the final weeks of their life.

I hoped that person told the important people in their life that they were loved.

It was hard not to feel like a vulture, waiting to get what I needed from someone who died.  So, I tried instead to think of it as someone giving me something they were finished with.  They didn’t know me, and never would.  In that way, it was impersonal, random.  But, this was a body part.  It would be taken from inside them and placed inside me.  It doesn’t get more up-close and personal than that.

Look back over the last 8 paragraphs.  You were able to read and process them one after the other.  Last week all those memories and realizations hit me at once, like the defensive line of an NFL team.  For the first time since I decided to do this again (which was right after finding out I’m diabetic again) the reality of my situation sank in.  I had a full-blown panic attack.  A meltdown.  Freaking out.  There would be no writing or anything else productive done that evening.  I was even too freaked out to eat.  Anyone who knows me can tell you that’s saying a lot.

So, here I am again, waiting for something that will cause physical pain, fear, discomfort, and frustration before I can breathe a sigh of relief.

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