Happy Birthday to My Failed Pancreas

You’ve been in there 15 years today.  What an amazing time it has been.  You worked hard, keeping my glucose normal until a year ago.  That’s longer than the average transplanted pancreas lasts.  During that time I never had a single problem with you.  You went to work as soon as you were stitched in place.  By the end of the day, a nurse in ICU would tell me those four words I never thought I’d hear, “You’re not diabetic anymore.”  I drifted off to sleep feeling more free than I’d felt in 21 years, in spite of all the tubes and wires that tethered me to all sorts of medical equipment. 

You worked beautifully every day, right up until you stopped making insulin altogether.  I gave you quite a workout in those first few months, eating sweets to my heart’s content, just because I could.

You held up in spite of all the harsh chemicals in my bloodstream keeping my immune system from attacking you.  You held up after the kidney failed and I had to get another.  You held up when I had cancer and my body was flooded with toxic chemotherapy. 

You gave me 14 years of a life I bid farewell to when I was only twelve.  At that ender age I had to accept that I would be diabetic for the rest of my life along with the insulin shots, a strict diet, and a long list of possible (and scary) health problems that went with it.  After several years with the disease, some of those scary health issues began.  It looked like my life was on a long downhill slide.  After doing peritoneal dialysis for 9 months and waiting for a kidney, I discovered a pancreas could be transplanted.

Just like that, I had to rewrite reality.  The impossible was possible after all.

I wasn’t the only one praying for your arrival.  Hundreds of people held fund-raising events to raise the $50,000 I needed to pay for you.  Insurance paid for the kidney, but not you.  I’m not exaggerating when I say you were much-anticipated by many.

You reminded me and so many others miracles do happen.  Some of them have never met me in person.  Who knew one small organ no larger than a deck of cards could impact so many? 

Of course, it wouldn’t have happened without the surgeons, the young man whose life ended the day before, and his family who allowed you to be donated to me.  Because of that, my relationship with you was bittersweet right from the beginning.  This is the first “re-birthday” I’ve celebrated since your retirement last year.  Now it’s more bittersweet than ever.  Yesterday, the anniversary of my donor’s death, I lit a white candle in his honor just as I’ve always done.

The kidney I received the same day I welcomed you to my body has been replaced and one day you will be as well.  Then there won’t be any part of that young man who saved my life in there anymore.

But the impact of that day—the most life-altering event of my life—will live on for the rest of my life.

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Remembering That Intense Easter A Few Days After the Transplant

It's Easter and I keep going back in my mind to 15 years ago.  Here's an excerpt from What Didn't Kill Me Made Me Stronger about an Easter Sunday when life was precarious.

 

The following day, Easter, my blood tests showed that I was anemic, and I had to have a blood transfusion.  It made me nervous to get someone else’s blood, though it had been several years since anyone had contracted HIV from a transfusion.  It wasn’t the same as getting someone else’s organs because I could actually see the blood in the bag hanging from the IV pole.  It took much longer for a unit of blood to drip into my vein than it did for a typical IV bag.                                              

It’s Easter.  This day is about resurrection.  Last week, that guy died, but parts of him literally rose from the dead and continue to live – not just inside me, but probably in other people as well.  By dying, he saved our lives.  Who got his heart?  His lungs?  The other kidney?  How are they doing?

Tim and Mom were both as bored as I was during the transfusion.  They talked in the waiting area at the end of the hall when I wanted to take a nap.  Time moves much more slowly in Hospital Land over the weekend.  It’s just one of the many surreal differences between that place and the outside world, where weekends pass in the blink of an eye.  I was glad Mom had someone to keep her company for a while.   

By mid-afternoon, Tim was on his way back to Austin, and the stifling boredom of a Sunday afternoon in Hospital Land was in full force.  Weekends in hospitals are an especially dull time for patients and their visitors, because there’s very little activity.  There are much fewer doctors in the building, and clerical and other support staff normally have weekends off.  Fewer surgeries, procedures, and tests occur, so the departments that do those things have fewer staff working those days.           

Hospital Land is like some sort of hybrid between a hotel and a minimum security prison during the weekend.  Televisions babble at empty chairs in waiting rooms.  The halls are quiet and deserted.  There are more empty rooms than during the week.  Doctors tend to discharge patients on Fridays if possible.  On the weekends, there’s  nothing to do but sit … and wait.  Knowing that it was even more boring for those who visited me gave me a pang of guilt.  Inflicting boredom on someone is, in my opinion, a serious offense, and now I was guilty of it.  After all of these years, there are times during an occasional Saturday or Sunday when I stop and think ‘Someone is having a really boring afternoon in a hospital somewhere.’  That stems from the time I spent in the hospital after my surgery.

I was also uncomfortable during that time.  Most of my discomfort was due to the fact that the new kidney hadn’t yet started working very well.  Still, there was a reason for that, given everything it had been though.  It had survived a serious car accident that killed its original owner, then been surgically removed and placed in a container with ice.  It had traveled by car from Tulsa to Oklahoma City, where it was handled and examined.  It had been surgically attached into the body of a stranger.  It had been flooded with high doses of very potent man-made chemicals that, while protecting it from a healthy immune system, were at the same time very harsh on the organ.  This new addition to my body had been through a great deal of trauma. 

“No wonder you don’t want to work,” I said to it.  I focused on it, trying to communicate with it.  I wanted it to know that in spite of all the harsh chemicals, it was wanted and welcome in my body.  I told this ailing, confused new body part that I loved it and I wanted it to stay.  I told it that I wanted it to be healthy and I would take care of it as best I could. 

“I’m not giving up on you, so please don’t give up on me yet.” 

I thought of the new kidney as a frightened orphan in a new and unfamiliar place.  It would need constant reassurance that it was going to be all right, even if I wasn’t sure of that myself.  From that day on, I sent my new kidney mental message of patience and love every day. 

“I’ve waited a long time for you.” “I’m so glad you’re here.”

To the pancreas, I said, “Thanks and keep up the good work.”

This was where modern medicine left off and the mind took over.  My belief in the mind/body connection would be a necessary tool to get me through this.  And it was a belief that was about to be tested.        

My body still carried too much excess fluid, so I wasn’t allowed to drink anything.  A plastic cup of water sat on the rolling table, with a small plastic stick with a 1-inch-square sponge soaking in it.  This was to moisten my lips and tongue without drinking any of the water.  My lips and mouth were extremely dry because I still couldn’t breathe through my nose, which was clogged with dried blood.  It surprised me how quickly the dry air in my hospital room had cracked the inside of my nose.  The dryness of my mouth meant that I was using that small sponge as often as possible.

That Easter Sunday night was the longest of my life – and maybe Mom’s too.  She slept for only a short time in the foldout bed.  Most of the night she sat next to my bed, waiting to hand me a tissue to blow my bloody nose or help me with the sponge on the stick.  I needed the sponge every few minutes, and almost never slept.  The constant interruptions in the middle of the night didn’t help matters any.  That’s how it is in Hospital Land.  It seemed that once an hour, someone would come n to check my vital signs, or change the bag of my IV, or weigh me, or empty the bag of urine and measure the output, or give me pills to take.  There was always something needing to be done to me.  I would curse under my breath whenever one of these interruptions meant having to get out of bed.  It was hard enough to get in and out of bed when I was alert.  Untangling all of the tubes and pulling myself out of bed while sleepy, in the dimly lit room. was even more complicated and annoying. 

“Wait, you’re tangled up.”

“I am?”

“Yes.  Pull your arm back through here,” Mom or a nurse would say, holding the tubes open for me as I carefully guided my arm through a gap.  Then I would take a step, only to feel the sting in my arm from my IV line being pulled in the wrong direction.  Once freed from that entanglement, I would stand shakily on a scale.  An aid would read my weight, which was always measured in metric units that had to be calculated into pounds before they made any sense to me.  There was no way Mom could get any sleep when all of this was taking place. 

The exertion of getting out of bed and back in caused me to breathe hard, which in turn dried out my mouth even more.  Several times, we were settled back in our beds when the loud, shrill beeping alarm on the IV pole went off.  Then we had to wait for the nurse to return and punch buttons on it to make it stop

At that point, I started to wonder if I would ever have full use of my leg and hands again.  For the first time, I started to doubt my decision to have a transplant. 

Maybe I was better off before.  I never bargained for this. 

That night felt like my trial by fire.  It was as if God said, “Just how much do you want this?”

It means everything.

“Well, then, prove it.”

Maybe this was the tradeoff.  In exchange for a much shorter than predicted wait for the pancreas and a relatively short wait for the kidney, I was being tested.  This was a major life test, but there was no way to study for it.  Determination alone would have to be enough.  

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Remembering Another January 12th

Have you ever found yourself on the anniversary of an important occassion in your life and remembered it even more clearly because the weather was just like it was that day?  That's the kind of day I'm having now.  Yesterday, it was a sunny, un-winterlike day, about 70 degrees.  Today, it's cold, dreary, and rainy, just like it was in 1998.  Join me in my little time capsule taken from my book.

It was a cold, dreary, rainy day that January 12.  My parents drove over, picked me up, and off we went to Oklahoma City.  The giant complex of medical buildings loomed ahead of us when we got there.  We parked and found our way through the maze of corridors to the transplant surgeon’s office.

The waiting room was large and crowded. 

Have all these people had transplants?  Are some of them waiting for that important call, just like I am?

I fought the urge to ask each one of them what their story was.  Time dragged slowly until my name was called and a nurse led me to an examining room.  What would this surgeon be like?  I hoped he liked me.  I hoped I would like him. 

Then Dr. Squires entered the room.  He had short, dark hair, wore the usual white physician’s coat, and stood a few inches shorter than myself.  And I’m 5 feet 9 inches in boots.  I don’t want to sound superficial, but it made him seem less threatening and intimidating than some doctors.  It took only a few minutes for me to realize there had never been any reason to be intimidated.  This was the most pleasant, humble doctor I’d ever met.  Weren’t surgeons supposed to be conceited and think they were God?  That was the reputation they had.

“The surgery will take about seven hours,” he told me.  This came as no surprise.   “The pancreas will go in your lower abdomen on the left side.  The kidney will be on the lower right side.  When it’s just a kidney transplant, it goes on the left.”

He explained more of the details to me.  I sat there, in awe of how far medicine had advanced since 1977, when I was diagnosed with diabetes.  What he was describing to me was a miracle.  And the best part of it all was that he never said, “This is what we would do if you were a candidate for this surgery.  But you’re not.  Sorry.”

He continued with details of the surgery. “I’ll perform the pancreas transplant.  Dr. Pennington will do the kidney.  We’re easy to tell apart.  He’s much taller than I am.”  He smiled.  Not only was he easy to talk to, he could laugh about his height – or lack thereof. 

How could anyone not like this guy?

It came as a relief to learn that most of the tests I had undergone to be listed for the kidney at Hillcrest could be used for this surgery.  I wouldn’t have to repeat them.

After the meeting, I practically ran to the waiting room to tell my parents all that I had learned.  We walked to the elevator and I repeated it all, word for word when I could remember it, as breathless and excited as a kid.  They both grinned.  It had been a very long time since I’d seen them smile like that.  We stopped at the Cracker Barrel in Edmond on the way back to Tulsa, where I ate fried shrimp, wondering how long it would be until I could walk into a restaurant and order dessert.  Dr. Squires said I could expect a wait of six months to a year.  This didn’t seem terribly long.  I had already been on dialysis a little over nine months.  He told me that being listed for two organs would mean that I racked up points on the waiting list twice as fast as when I was listed for one.

The rest of the way home, I peered out the window into the soggy landscape, trying to see the future in it as if it were a crystal ball.  It was still a big mystery, but now it was much less frightening.  It may have been a cold, grey day outside.  But, inside, I was all warmth and sunshine.  I had just received the best news of my life.     

Read more excerpts from What Didn't Kill Me Made Me Stronger: How I Found Hope While Surviving Diabetes, Vision Loss, and Organ Transplant at Jim's site JimFairbanks.nethttp://www.jimfairbanks.net/id30.html