10 Years!

Ten years ago right about now I was in surgery and so was my kidney donor.  After months of tests, she was found to be a suitable donor.  Her offer to give me a kidney literally came out of nowhere.  Well, that’s how it seemed.  Actually, it came from God.  Only a few weeks after finding out my first transplanted kidney failed and I started hemodialysis (a date with misery three times a week), someone I’d never met was offering to give me a kidney.

First there was the jolt of losing the kidney.  Then there was the joyful jolt of a possible way out of that nightmare.  My emotions were like a pinball being bounced all over the place.

But, first we had to find out what her blood type was.

Over the next several months, one hurdle after another was cleared.  An infection in the dialysis port under my collarbone delayed the surgery for several weeks.

I’ve been under general anesthesia for more surgeries and procedures than I can (or want to) count.  Coming out of it, reality swims into focus much more gradually than when you wake up in the morning.  It seeps into your head as, one by one, your senses come back to life.  From there, it spreads lower to your arms and legs.  They can feel the blanket covering them and the temperature in the room, but they are too heavy to move.  At this point, you’re not sure you want to wake up further, because the place the surgeon cut and stitched is about to hurt, if it doesn’t already.

Then a post-op nurse says your name and asks how you feel.  All you can do is mumble or groan because your tongue feels thick from all the drugs.  Your throat is scratchy from being intubated for hours.  You want to say, “I feel like I was hit by a freight train.”  They spoon feed you ice chips, which melt on your tongue, waking it up.  The cool water soothes your throat.  

All of that happened that day ten years ago.  But this time, I woke up feeling more joy than I thought anyone could feel when they’re that groggy.  I joked with the nurses—something I’ve never done before or since at that stage of recovery.  Maybe the difference was having an organ from a living donor.  Maybe it had something to do with the lively, spirited nature of my donor.  It’s a question I’ll never be able to answer with any certainty.

In almost every living donor transplant, the kidney starts working immediately.  Somehow, I knew it had this time, even before the doctor confirmed it.

Over the past ten years, I’ve had cancer, gall bladder surgery, a major hernia surgery where they put a big sheet of mesh under all my abdominal muscles, and last year the Type 1 diabetes made an unwelcome return.  

The kidney held up through all of it.  It still works as well as it did in 2003.  At ten years, it has lasted twice as long as the first one from a deceased donor did.  

Just after the transplant, the additional vision loss put a damper on the post-transplant euphoria I normally would have had.  It has made my life much more of a challenge than it’s ever been.  Only recently have I realized that without her stepping forward so quickly to give me a kidney, I would have waited much longer. That means I would have been on dialysis much longer and my eyesight would have kept getting worse.  I might have ended up losing all of it.

I admit that too often, with all the hassles of being a middle-aged, legally blind guy adjusting to diabetes again, I forget that I’ve been given a miracle.

My resolution at this major milestone is to remind myself of that fact more often—especially when life is stressful and scary.  The kidney, in addition to keeping me alive and off a dialysis machine, is living proof that God loves me and wants me to be happy.

Read Jim's other blog ConfessionsOfABornAgainDiabetic.Wordpress.comhttp://confessionsofabornagaindiabetic.wordpress.com/

Follow this blog for updates on new posts. 

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

A Week of Coincidences. Or Are They?

This month is National Donate Life Month.  I promise, I didn’t schedule it for April, but the timing is perfect.  Just yesterday, I gave a speech for a Toastmasters International speech competition about waiting for and recieving a transplant.  I promise, I didn’t schedule the date for that round of the competition, either.

This coming Friday, April 6^th, will be the 14^th anniversary of my kidney/pancreas transplant.  I promise, I didn’t schedule that, either, though it would have been nice if I could have.  That was one of the points I mentioned in my speech—that you never know when “the call” will come when you’re waiting for a transplant.

I talked about my donor, a young man who died in an auto accident.  He’s my hero and I’ll never get to meet him.  But, I made an unwritten agreement with him to take care of his kidney and pancreas, to keep them alive.  In return, he keeps me alive.

As hard as I tried, the kidney only lasted five years.  The speech had to be 5-7 minutes in length, so I didn’t go into that.  Nor did I have time to mention the amazing woman who gave me one of hers that same year.  

I wanted to get them to sign the back of their license to be an organ donor, but I didn’t want to push my luck.

She’s a devout Catholic.  God told her to give me a kidney.  Of this, I am certain.  For the first few years, I had no idea why.  We had never met when she was instructed to do this for me.  How’s that for a miracle?

Once I started writing my memoir, a realization came to me.  Back when I was going through all those harrowing health issues, I asked over and over, “Why me?”  I was never a bully or especially arrogant.  Most people would have told you I was too nice to deserve that.  About halfway through the first draft of the book, I realized this story had to be told in first person by someone with the ability and desire to tell it.

But, I didn’t think actually talking about it to a room full of people would be part of God’s plan.  Wasn’t it enough to write the book, step back, and let people read it?  Apparently, it wasn’t.

Now I’m doing exactly what I was meant to do—writing and speaking.  Believe me, I’m just as (maybe even more) surprised as anyone.  Those who knew me in high school and college can tell you that, aside from being a bit of a smartass, I wasn’t one to draw attention to myself.  Everything I’ve been through has toughened me up, even enough to get over stage fright. 

Fourteen years after getting a second chance at life, I’m feeling more alive than ever.

Three separate events with a common theme converge in one week—National Donate Life Month, my 14^th “re-birthday,” and inspiring a room full of strangers with my story.  It’s not coincidence.  Of that, I’m certain.

Eight Years With Her Kidney

This post is a couple of weeks late.  I was in a funk for a few weeks, feeling pretty overwhelmed by how fast the publishing industry is changing and all the stuff a writer has to do these days to self-promote.  You’d think someone with a degree in advertising wouldn’t be bothered by this, but it’s all online these days.  A visually-impaired, right-brained artistic type can be intimidated pretty quickly by it all.  Worst of all, it can make me feel pretty stupid and inadequate.

But, I’m coming to terms (again) with all that and moving forward (again) at the pace of a snail—one that can’t see where it’s going.

I was also overwhelmed by life in general.  Who?  Me?  If that surprises you, carefully read the subtitle of my blog again.  Just saying it is a mouthful.  Living it is a bit more challenging than that.  I try not to complain about it, but there are times when it’s every bit as hard to do as it sounds.  The problem was, I allowed myself to focus more on how hard it is for me and ended up throwing myself a big ol’ pity party--complete with balloons, a live band (playing only sad songs, of course), a sad clown, and games like Pin the Fail On the Writer.

The other day, I located the Live Strong bracelet my Aunt Judy got for me when I had cancer and have started wearing it again.  Not only does it remind me of how much of stronger I am after surviving that, but it serves as a rubber band I can use to snap my wrist when a negative thought overstays its welcome.  It’s working and I don’t have welts on my wrist, either.

Part of the blues was due to September being a minefield of unpleasant anniversaries.  I’ll spare you the list of disappointments and traumatic events.  Even as a kid, I used to get wistful in September, missing summer and already discontent with the still-new school year.

But, there is one very happy even that took place in this otherwise intense month.  On the 4^th I celebrated eight years with my kidney Connie gave me.  This was one of the rare years when I got to actually spend part of the day with her.  I took her and my parents to lunch at Red Lobster.  I had the coconut shrimp—two great tastes that go great together.  Whoever came up with coconut shrimp is a genius.

As you can imagine, having a live donor is a very different experience than a transplant from a deceased donor.  I know this because my pancreas and first kidney came from a young man who died in a car accident.  There are so many questions about him I wish I could have answered.  That isn’t the case with Connie, who had us laughing at stories about her granddaughter born last year, now at a very cute and sometimes challenging age.  I hope she’s proud of her grandma someday.  She has plenty of reason to be.

Most people who have known me for the past several years will tell you I’m a survivor.  That I’m at times feisty, stubborn, sassy, tenacious, optimistic, driven, ambitious, and creative.  It was that way before 2003.  I may have received a boost in those qualities when I got Connie’s kidney, because all those terms can be used to describe her as well.  Unlike with the pancreas and first kidney transplant, I never had to wonder if part of the donor’s personality was asserting itself in my behavior.

Thank you, Connie.  I’m doing all I can to make you proud of me.  (Not that it was ever a condition of the gift).  I need to remember God wanted you to give me this kidney.  If it’s God’s will, my memoir will be published.

Seeing Connie again has given me the nudge (shove, fire lit under my butt . . . ) to renew my efforts at getting my memoir published.  I have an unusual and inspiring story to tell.  I’ve lived with my odd situation for so long now that I sometimes forget that.  Sometimes I forget (and other times I’m only too aware) that not everyone is a legally blind former diabetic writer with a transplanted kidney and pancreas (from two different people) living in a quirky college town.  Oh yeah, and now I can say cancer survivor, too.  One or two people might be interested in hearing me speak about it.  With any luck, a few more will be interested in reading about it, too.

I'm (Still) Here Because of Mom

It was probably just a miscalculation.  It makes more sense than the other explanation for the tardiness of my grand entry--my debut, so to speak.  Whatever the reason—mathematical or biological—I was born six weeks after the due date.

I’ve never liked being rushed.

In those days, they didn’t induce labor.  Dad took Mom for a ride on a bumpy road hoping I would take the hint, but it didn’t work.  You can’t rush quality, as I’ve pointed out to my mother on several of my birthdays.  I even held out until a few minutes after midnight, just so it would be a day later.  But I was born on her grandmother’s birthday.  That counts for something, right?

She’s been putting up with odd and willful behavior ever since.

Actually, I was an extremely well-behaved kid until my teens.  I was easily entertained, made good grades, and my teachers never had to yell at me (much).

Then, right after hitting puberty, I was diagnosed with diabetes.  Suddenly, my parents didn’t quite know what they had on their hands.  Still basically a good kid at school, my mother discovered that I had inherited her strong will, which sometimes clashed with hers.

What can I say?  I am my mother’s son.

From her I also got a positive attitude and just enough Cherokee blood for dark blue eyes and skin that tans easily in the sun.  I’ve been told the three make a nice combination.

On the surface, she’s like millions of Southern women from her generation.  She writes Thank You notes by hand and organizes the main food entrees whenever someone at her church dies.

But, she was tough enough to sing to me and my brother when I was four years old while a killer tornado ripped through the town where we lived.  She’d placed us under my parents’ bed, but only her head and shoulders would fit underneath.  There she was, singing to us so we wouldn’t be afraid, while most of her body was left vulnerable to whatever might land on her.  Fortunately, our home was spared.  But, it was my first real hint of the tough survivor beneath the sweet exterior.

Ever the maverick, the nomad, wanderlust took me to Tampa, Kansas City and Dallas.  I was out of college and anxious to experience the world—at least some of the urban U.S.  She stayed in Arkansas and worried about me.  Her little boy was on his own in the big city, an environment she never much cared for.  I had only lived in Austin a few months when the diabetic complications began.  Then I was back with her and my father in their home, terrified of the big, dark question mark that loomed in front of me.

She had to draw up my insulin shots when internal eye hemorrhages made it impossible for me.  She put the drops and ointment in my eye in the first few weeks after I had surgery to remove the blood inside my eye, staring unflinchingly at what must have been a gruesome sight.  She shared my despair and joy as my vision fluctuated.  And that positive attitude never wavered.

A few years later, my kidneys failed, and she was right there beside me; at the training class for new peritoneal dialysis patients; driving the two hours to Tulsa, where I lived, to help me until I regained some strength; and always offering words of encouragement over the phone.

A year later, my parents’ endurance would be put to a big test when I had the kidney/pancreas transplant.  There were a few complications and I ended up spending more than three weeks in the hospital.  They had to watch me struggle and suffer.  At one point I almost died.

But, with their help, I pulled through.  Mom does so much for me and would do much more if my independent nature allowed it.  She sets out to take care of everyone she knows and cares about.  Yes, I got that kind of mother—one who can cook and bakes sweets no one can resist.

She won’t touch a computer, but remembers birthdays, anniversaries, graduations, and every other occasion in the lives of people around her.

Over the years, she’s nursed me back to health more times than I can count.  This past year, she did it again.  This time, it was cancer.  There were times I was nauseous and too frail to make it to the bathroom.  I had to use a plastic container, which she emptied without complaint dozens of times.  When the mouth sores made it impossible for me to eat solid food, she spent hours searching the grocery store for something soft enough.  She had to watch her boy take on the appearance of a frail old man.  The worst part for her, like any mother, was watching helplessly while I suffered.

You eased my suffering more than you’ll ever know, Mom.  It’s no exaggeration when I say I couldn’t have survived this without you.  You gave me life, and you keep helping me hold on to it.

PTA (Post-Transplant Anatomy)

There is some confusion, even among medical professionals not directly involved with transplant patients, about the number and location of a typical transplanted kidney.  Fewer are even aware a pancreas can be transplanted, let alone the specifics.  So, to clear up some of the myths and mystery involving my two “carry-on bags,” I’m going conduct my own Q & A session.  Don’t worry; there won’t be any diagrams, graphs, or gory photos.

Why didn’t you get two kidneys?  Because you can live with just one.  In fact, even if that one is only working at half capacity, you’ll still be OK.  It’s one of only a few body parts to have a spare.  In some cases, when the donor was elderly, both kidneys are given to the recipient, but that’s pretty rare.

And they took out one of your kidneys that didn’t work and replaced it with the new one, right?  Wrong.  The new one was placed in one side of my lower abdomen; the pancreas went on the other side.  Your kidney is only about the size of your fist.  Your pancreas is about the size and shape of a deck of cards.  That’s small compared to other internal organs.  There’s room for them in front.  And, no, there isn’t a lump in the skin above each one.  Surgeons leave the old, failed kidneys where they are (except for rare instances when they are causing pain or some other problem).  Eventually, they shrivel up like a prune and get smaller.  To get to them would mean cutting through several layers of back muscle, which is why donating a kidney can be harder for the donor than the lucky one who gets it.

So, you have three kidneys and two pancreases?  Yep.  I’m like those packages of chicken you find at the grocery store with six wings or four drumsticks.  That must have been one strange-looking bird.  From the outside, no one can tell my “innards” are out of the ordinary.

Why did you get a kidney and a pancreas at the same time?  The hospital had a “two for the price of one” sale.  Not really.  I just like to see how people react when I tell them that.  I was diabetic for 21 years.  That’s what caused the kidney failure.  With a new pancreas working properly and keeping my glucose normal, it helps ensure the new kidney will last longer.  There are still a number of things that can go wrong, but at least high blood sugar won’t be one of them.

Do you still have to take insulin shots?  No.  The new pancreas takes care of that.  I can eat as much of whatever I want and I don’t have to stick my fingers several times a day to test the blood sugar.  Life is sweeter when your blood isn’t too sweet.  But, in place of insulin, I take several pills a day to keep my body from rejecting the transplanted organs.  Until they figure out how to clone those two parts, I’ll always have to take the pills.

Did you pick up any of the habits, tastes, or personality traits of the donor?  That’s a good question.  The pancreas (and first transplanted kidney, which only lasted five years) came from a young man in his early 20s.  That’s about all I know about him.  One interesting change I noticed a few months later was that I liked heavy metal rock more than before.  Back in the 80s when it was popular, I could take or leave most of it.  Six months after the transplant, I was rocking out to Van Halen, Aerosmith, Nazareth, and a bunch of other “hair bands” with the volume turned up high.  I also started to have an interest in martial arts.  A year after the transplant, I was taking a non-contact kickboxing class.

One of the meds is prednisone, a steroid, which I took in high doses the first several months.  It makes people more aggressive.  So, my personality changed for a while, but (I guess) more or less returned to what it had been before.

I also found that I didn’t like Chinese food as much as before.  I mean I didn’t like as many different dishes of it.  The ones that I still like, I like very much.

My second transplanted kidney came from someone I know (though I didn’t know her when she offered to donate it—but that’s a topic for another post).  It’s nice having a living donor and being able to know more about them.  She’s a Gemini, same as me, and our personalities are similar.  She’s feisty, quick-witted, spontaneous, creative, and a big fan of change, often redecorating her home.  One thing is certain—this kidney is much healthier than the last one.  It has already lasted almost three years longer than the last one and with no problems at all.

Life must be easy now, isn’t it?  Well . . . it’s easier than being a diabetic on dialysis.  It’s easier than being a former diabetic on dialysis.  But I have to be careful to avoid sick people.  The anti-rejection drugs lower my immunity.  If I get sick, it takes my body longer to fight it off.  The prednisone has side effects, one of them being loss of bone calcium.  I take supplements after having had a broken right foot (once) and broken left foot (twice).

Any final remarks?  Yeah.  Be an organ donor.  All you have to do is sign the back of your driver’s license (or state-issued ID) and—this is very important—tell your family that’s what you want in the unlikely event of a tragedy involving you.  The people who would benefit from it will never be able to thank you themselves, so I’ll take this opportunity to thank you in advance for them.