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/

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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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Author site http://www.jimfairbanks.net/

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.

Kidney Transplant, Desperate Housewives Style

I have to laugh out loud sometimes at how Hollywood stumbles across facts like a drunk bull in an antique shop.

The latest example is the character of Susan Delfino (played by Teri Hatcher) on Desperate Housewives (Sunday nights on ABC).  The adorably ditzy Susan experienced kidney failure, earning pity for the likeable character.  And she made it look like a day at the beach.  Sure, she passed out a few times and wound up in the hospital, but there was no nausea, anemia, perpetually itchy skin, or that grey, sickly-looking complexion.  All of these are symptoms caused by imbalances of various toxins, chemicals, and nutrients that occur when the kidneys decide to take a time out.

There was one detail the writers of Desperate Housewives actually exaggerated.  They had poor Susan doing dialysis treatments lasting six hours each, not the usual four.  Hollywood giveth and Hollywood taketh away.  Somehow, she did dialysis 50% longer than most kidney patients, but had 75% more time and energy when not hooked up to the machine and looked 122% better while she was at it.

Within only a few weeks a donor appeared out of the woodwork.  Actually, he appeared from Susan’s past and--like so many of the people her character attracts—is not quite right in the head (though his kidneys are superb).  It turns out he went to high school with her and had been obsessed about her and is only too happy to share a kidney with her to get on her good side—or in his case—noticed at all.  As luck (and Hollywood) would have it, he’s the right blood type.  And he’s a perfect tissue match, which isn’t a guarantee even with the correct blood type.

Having received a kidney from a living non-related donor, I can report that it takes several weeks to approve someone as a donor.  There are dozens of medical tests checking the health of several other parts of the donor’s body, not to mention several vials of blood taken to test for a wide variety of diseases.  The results don’t come back overnight.

Then there’s the psychological testing, which obviously isn’t something the transplant team at Fairview Hospital bother with.  In the real world, they make sure the donor isn’t being paid for the kidney or being coerced into donating it.  They check to make sure the donor isn’t giving up a kidney for any number of mentally unhealthy reasons, such as romantic obsession born out of a teenage crush.

In the end it was Susan, not a doctor, who determined her potential donor wasn’t healthy enough between his ears to spare any other parts.  Discouraged, but never looking any worse from the experience, her wait for a kidney continued.

Enter mentally unstable donor #2: the new bride of equally cuckoo neighbor Paul Young.  She married him while he was serving time in prison for murder, assuming he’d never actually be free.  She somehow missed all the news reports about prison overcrowding.  Little wonder why she’s so messed up.  It turns out the simple-minded Beth was manipulated by her evil mother (also a prison convict) to marry Paul so she could do some sort of harm to him.  Yes, there’s plenty of crazy to go around, but not enough kidneys.

Long story short, Beth commits suicide there at the hospital, with documentation that one of her kidneys will go to Susan Delfino.  How about that?  Crazy Donor #2 Beth is a perfect tissue match and the right blood type too.  Gotta love those odds, especially if you’ve ever been on a transplant waiting list.

Of course, Susan comes through the surgery with flying colors and bounces out of the hospital in record time, looking like she might have had a stressful day at work.  Apparently, the crackerjack transplant team at Fairview Hospital didn’t advise her to stay inside, away from crowds for several weeks after the surgery.  Her immune system would have been reduced to almost zero so it wouldn’t attack Crazy Beth’s kidney.

In the real, non-Hollywood world, the high dose of Prednisone (a steroid anti-rejection drug) a transplant patient takes for several months would have given the lovely Susan acne, a round face, a bloated body, a ravenous appetite, and a very short temper.  Teri would have no doubt spent hours in the makeup chair and I hear those things get uncomfortable after a while.  Awwwww.

It will be interesting to see what other “untransplantlike” things Susan will do in future episodes.  Don’t get me wrong.  I like the show.  It’s one of only a few with interesting plot twists, clever lines, and a nice mix or drama and humor.  There’s quite a bit of talent on there, too.  What’s not to love about Teri Hatcher?  And it’s good that the subject of organ donation is brought to viewers’ attention.   

I just had to add my own little reality check, for the 300 million of us living outside the make-believe world of Hollywood, where many of life’s problems are solved in half an hour (twenty minutes excluding commercial time) and sick people look better than most of us on our best day.

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.