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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Finding Out Someone Would Save My Life

Because yesterday was the ninth anniversary of my second kidney transplant, I thought I would share an excerpt from my book, which is in the final editing process.  Maybe it's fitting that it will probably be published in September.  It's a month of intense highs and lows for me.

Blindsided

Why is the word always associated with an unwelcome surprise?  The term comes from something approaching from outside your field of vision, your “blind” side, catching you off guard.

     It’s a situation I am only too familiar with.  With non-existent peripheral vision, people and objects always seem to come out of nowhere.  I get blindsided almost every day.  It can cause everything from mild surprise to injury. 

     But, it’s possible to be blindsided by something good.  Out of nowhere, exactly what you need.  Sometimes, it’s far beyond what you hoped for.  You find yourself saying, “I never would have expected that in a million years.”

     Chance?  Maybe.  Luck?  Probably.  God?  Yes.

     There’s no other explanation for an unexpected gift so completely unselfish that it leaves you shaking your head in awe.  A gift of such profound generosity that Hallmark doesn’t make a greeting card to express the gratitude you feel.  That’s divine intervention.  That is all the proof anyone needs for the existence of a mysterious, but loving God.

     I guess you could say God made me legally blind—and has blindsided me over and over since then.    

 

Connie

     My parents and I sat in the waiting area of transplant office at OU Med Center.  I was there for a checkup with Dr. Squires.  We had been there long enough for them to finish reading the Ft. Smith and Greenwood newspapers they had brought to keep them entertained during the wait.  Mom was reminding me of things to ask Dr. Squires.

     She added, “And be sure to tell him that Connie wants to donate a kidney,so find out how that works.”  

     What?? 

     “What are you talking about?” I said.  “Who is Connie?”

     Did I hear her right?  Someone wants to give me a kidney? 

     “Didn’t I tell you Connie Grote wants to give you a kidney?” she asked.

     “No!”

     “Oh, I thought I had told you about that,” she said, a little embarrassed at the oversight.

     “Someone wants to give me a kidney?”  I asked incredulously. 

     “Yes, Connie Grote, who cuts my hair, offered to give you one.”

     At that moment, the nurse called my name and I went to have my vital signs checked, which was the first part of a typical appointment at the transplant office.  My throat had suddenly gone dry and I could barely speak to the nurse.  This unexpected announcement had triggered a dozen emotions all at once. 

     Someone wants to give me a kidney!  I can’t believe this.  I don’t even know her.  Mom said her name is Connie something.

     I couldn’t even remember her last name.  I wanted to dart back to the waiting area and ask my mother for more details.  She had just casually dropped this information in my lap and now I had to have my checkup.  While waiting in the examining room, I pressed my thumb and forefinger in the corners of my eyes to stop the tear ducts.  Shock, gratitude, curiosity, desperation, hope, skepticism, worry, relief, exhilaration—those and a dozen other emotions elbowed each other out of the way in a rush to the front of my brain, which had suddenly grown crowded with thoughts and unfamiliar emotions I didn’t have a name for. 

     “I just found out someone wants to give me a kidney,” I told Barbara, the transplant coordinator as she began to go over my medications on my chart.

     “That’s wonderful,” she said.  I can’t remember what else she said, or what all Dr. Squires told me when I shared the news with him.  He explained all the steps necessary for her to be tested to make sure she was a suitable donor for me. 

     After my checkup, my parents and I went to eat lunch in Bricktown, an area of Oklahoma City with several restaurants.  It was our custom, but this time was different.  Over lunch, I told my parents what Dr. Squires had said about the subject of a live donor and got as many details as I could from my mother. 

     Mom said she had talked to Connie about my situation the last few times she had gone for a haircut. 

     “One day, she tapped me on the shoulder and said ‘I’ll give your son a kidney.’  Well, I was flabbergasted.” Mom said.  So, the news had come right out of the blue to her just as it had for me. 

     She went on, “I asked her ‘Connie, what if someone in your own family needs a kidney someday?’  She said ‘God will take care of them.’  So I said ‘Well, OK then.’  Can you believe that?” 

There's more to that chapter, but you have the main part.  It's actually the first part I wrote when I started the book.  It just seemed like the right place to start.  What do you think?

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