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Wednesday, April 27, 2011

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.

Wednesday, April 20, 2011

The Many Faces of Jim

I’m starting to recognize myself in the mirror again.  What I see looking back at me is a slimmer version of what I saw last fall.  It’s funny how a serious illness can make you feel more satisfied with the former status quo.  Not that I was dissatisfied before, but the cancer put things into perspective.

Today a good friend told me, “No offense, but last month you looked like death warmed over.”
None taken.  I already knew that.  I avoided looking at the mirror, even when I brushed my teeth.  After the beard and most of the hair on my head fell out, the bottom half of my face looked like a twelve-year-old boy’s.  The top half?  An old man.

This isn’t the first time I’ve had to adjust to drastic changes in the way I look.  When my kidneys failed in 1997, my weight dropped to where it was in college (where it happens to be once again).  My skin was sort of grey.  In other words, I looked about like I felt.

I looked even worse when I got out of the hospital a year later after having a kidney/pancreas transplant.  A purple hematoma shaded the right side of my face and neck.  My arms and legs were like twigs.  I looked like a junkie with little bruises on my veins from blood tests and IVs.  Within a few months, my color was back and the Prednisone (a steroid and anti-rejection drug) had quickly increased my weight, and it showed in my face.  At first I welcomed it.

Then my looks started changing even faster.  Some days, I woke up to find I looked different from the night before.  No, it wasn’t after a night of heavy drinking, either.  I was still on high doses of Prednisone.  (In addition to weight gain, it has some other unpleasant side effects, but that’s another post.)  I bulked up like never before.  I loved how my shoulders looked like a football player’s.

My face, on the other hand, looked like Charlie Brown.  I moved back to Fayetteville and some people didn’t even recognize me.  I had to buy new clothes to fit my bigger, healthier, post-transplant, non-diabetic body.  That didn’t bother me.  What bothered me was having to buy 36-inch waist pants at my heaviest. 

For the first time in my life, a doctor cautioned me about putting on more weight.  “It’s easier to keep it off than to take it off later.”  Really?  I’d never had to think much about it.  Perpetually scrawny Jimbo had attained a maximum healthy weight. 

Welcome to the world of the non-diabetic.

The Prednisone dose gradually tapered off and the bulk went with it.  Most of it, anyway.  A year after the transplant I had the body I was meant to have.  With a normal metabolism, I could work out at the gym and hold on to the results.  Before, a day of two of high blood sugar could undo several days’ worth of weight-lifting.

So, at 35, I was more satisfied with my appearance than at any other time in my life.  My body had undergone changes more rapid and drastic than adolescence.  For several months, it was one surprise after another—some welcome, some not.  But it had been worth it.  For the next few years, I carried myself with more self-confidence than I’d ever known, secure in the knowledge that, finally, I didn’t look diabetic, or like a dialysis patient, or overweight, or underweight. 

When the kidney failed a few years later, I looked just as I had the first time around.  After a second transplant, my body and appearance returned to what had become normal for me.  I landed on 40 not only glad to be alive, but grateful I didn’t look ill--and happy that my face wasn’t steroid-plump and round like Charlie Brown’s.  Had I really dreaded f-f-forty?  Once again, a health issue had put things in proper perspective.  Getting older sure beats the alternative.

Then along came cancer.  I was too sick to even care how bad I looked.  Not just vanity, bold cold weather made sure I had my head covered whenever I left the house.  One nice thing about having cancer in the wintertime—it kept me inside, so few people saw just how sickly I looked. 

Several weeks after the chemo, my hair gradually began to sprout, along with the first signs of green in the spring.  My beard—and especially the hair on my head—are much softer than ever.  Who knows if or how long that will last?  I’ll just enjoy it as long as I have it.  It’s just the latest twist in the ever-changing story of my life, illustrated by my appearance.

Monday, April 11, 2011

Car Doors

People want to be helpful, and I appreciate that.  Sometimes, though, I get more help than I want—or need.  Case in point: getting in and out of cars.  Some well-meaning souls seem to think operating a car door is too complicated for someone with limited vision.  The truth is, it’s one of the few things that are still just as easy for me to do as before.

Well, almost, that is.  Sometimes I open the back door when I mean to open the front passenger door.  Oops.  It takes me a split second to realize my error and another split second to locate the front door handle.  It usually takes the drive a nanosecond to say, “That’s the back door!” as if opening it would detonate a car bomb.  Depending on how well we know each other, I might come back with something like, “Oh, I thought you wanted to make out.”

There are those who think they need to open the door for me, hand me the seat belt, and close the door for me.  I’ve had some try to fasten the seat belt for me, which makes me want to ask for my sippy cup and binky.  Maybe have them pop a Barney CD in the stereo. 

Getting into a car is so easy you could do it with your eyes closed.  Don’t believe me?  Try it sometime.  After years of getting in and out of them, you’ll find things are usually in the same place in all cars.  Swing the door open.  Use your free hand to locate the seat.  Lower your derriere onto the seat.  Bring your legs in.  Reach for the door and pull it closed.  You’ll find the seat belt is in the same place on virtually every automobile, though some are more convenient to grab hold of than others.  Ditto the part in the crevice of the seat.  Some are deep down in there, some are on a stem-like apparatus that practically meets you halfway.  Now you can open your eyes, especially if you’re in the driver’s seat.  Wasn’t that easy?

Let me do it myself.  If I need help, I’ll ask for it.

A few weeks ago I was sitting in someone’s car waiting for them to load something in the back before giving me a lift home.  A woman was talking to me while I had the passenger door open, letting the car air out after being closed up for several hours.  I was enjoying one of the first warm days of spring.  The fresh air revived me after a day-long writer’s conference inside.  Without warning, she pushed the door shut.  Fortunately, I hadn’t picked that moment to stick an arm or leg out of the car.  Apparently, she thought I not only couldn’t do it myself, but was incapable of deciding if/when I wanted it shut.  In the long run, she made things difficult for me, because I tried to open the door again but couldn’t locate the latch to open it.  That is one of the things about car doors that have gotten more complicated, not just for me, but for most people.  These days, it might be up next to the window or all the way down by the floorboard.  The driver got in and started the car before I ever found it and we drove home with the windows open while I tried to get over the irritation of having a simple decision made for me.

When in doubt, just ask.  When you ASSUME, you make an ASS of U and ME (but mostly U)

Tuesday, April 5, 2011

My Last Diabetic Day: A Tribute to My Donor

     It was thirteen years ago today when I got the call that changed my life forever.  A kidney and pancreas had been found for me.  Overnight I went from being a diabetic doing dialysis to being free from that life.  It’s a bittersweet day for me, because I know someone lost someone they loved that day.  It’s ironic how carefree that day was for me.  It was one of the few days I didn’t wonder if “The Call” would come that day.  It must have been a very different day for his family.

     This is an excerpt from my memoir, which I hope to have published.

Sunday, April 5th.  Everyone had set their clocks forward the night before.  Since becoming visually impaired, the switch to Daylight Savings Time each spring has been one my favorite days of the year.  It meant an extra hour of light each evening.  That translated into ease of mobility, either by driving or walking. 
     My day started an hour later than usual.  It would take me a few days to get accustomed to the time change.  Not that it really mattered.  I was no longer working and by then, I usually slept almost twelve hours a day.
     It was a beautiful spring day.  The sun was shining, the wind wasn’t blowing too much, and it was warm.  After I got my morning exchange done, I went for a walk.
     An old railroad had been converted into a trail for walking, jogging, or biking.  It ran roughly parallel to
Riverside Drive
, except it weaved between homes, back yards and businesses.  It was more secluded than the path in the long narrow park on the riverbank, so it wasn’t used by as many people.
     My energy level was good and I was in the mood to explore.  Much of the trail was shaded.  I was surprised at just how close it came to the backs of some of the houses and I wondered how long it had been since it had been an actual, functioning railroad.
     It was nice to walk for pleasure, without needing to be somewhere by a certain time.  It was one of those rare times when I didn’t have a bus to catch.  There were no groceries to carry and there was plenty of daylight—an extra hour of it—left in the day.  There was no need to hurry.  This was a good thing, because I hate feeling rushed.  Besides, Sundays like that are too perfect to rush through.
     I must have walked a couple of miles, though it was hard to be sure because of the way the trail curved.  There were no street signs to identify which block I was on.  This was a rare moment for me, especially since my kidneys had failed.  To be at peace and content—“in the moment,” as they say—was a luxury.
     When I reached a point where I had used about half of my energy, I turned around and headed north, back home.  I remembered that there was a small diner near 21st and Riverside and decided a hamburger would be good for lunch.  It was starting to get pretty hot out as I approached the building.  A cool drink would really hit the spot.
     It was locked.  That didn’t make sense, so I checked the sign for the hours of business.  They closed on Sundays at .
     What time IS it anyway?  Did I lose track of time?
     Usually, I am a very good judge of time, so it surprised me that I was off the mark by so much.  Then I remembered the time change.  It was later in the day than I thought it was.  I was only five or six blocks from home, so I headed there, with that eerie, slightly off-center feeling you get when time has tricked you.
     After I ate a small lunch (my appetite had dwindled over the past several months) and did another exchange, I took out the trash and spent a couple of hours painting in ink.  It was still mostly experimental, but now and then I managed to impress myself with the results.  I had just cleaned up after my painting when the phone rang.
     “James, this is Tawanna, we need you to get here as fast as you can make it.  We’ve found a donor.”
     Let me try as best I can to describe how I felt.  You’ll have to forgive me if it sounds cliché at times.
     Yes, my hands trembled, and yes, my heart skipped a beat—maybe two.
     Tawana, the transplant coordinator, continued, “Do an exchange and bring a bag of solution with you to do one here.”
     “OK,” I said, trying to stay calm.  This was important information.  I needed to pay attention.
     “Don’t eat anything before you get here.  What time did you eat last?”
     I told her when it was, what it was, and how much it was.  She might have asked what my last blood sugar test was—or maybe not.  It’s been several years and with each passing second, my excitement increased.
     As soon as she hung up, I called my parents.
     Oh, God, please let them be home.
     My mother answered the phone. 
     She already sounds tense.  Is everything OK there?
     “Mom, they found organs for me,” I said, so full of excitement, I could hardly contain myself.
     “I know, honey, she called here a few minutes ago.”
     What?  Why would she call there first?
     “She wanted to make sure your number hadn’t changed.  When she called you the first time, some girl answered the phone and didn’t know who you were.  I told her you live alone.  I guess she dialed wrong the first time.”
     So, if Mom and Dad hadn’t been home, I would have missed out on this. 
     “We’re getting ready as fast as we can,” Mom continued “It might be close to when we get there.”
     They lived two hours away from Tulsa.  Still, I rushed around my apartment, trying to think of what I would need for a ten-day hospital stay. 
     Take shorts with an elastic waist.  My belly will be tender. And loose-fitting clothes, magnifying glass, and socks.  Clean underwear, that dialysis bag, sunglasses.  What else?
     An old episode of I Love Lucy flickered across my mind.  It was the one when a very pregnant Lucy enters the room and announces, “It’s time.”  Ricky, Fred, and Ethel panic and run around the room, trying to pack a suitcase and spilling it onto the floor.  In their haste, they run out and leave Lucy standing there.  I smiled, slowed down, and hoped my parents were a little more composed than that back in Greenwood at that moment.
     There were phone calls I needed to make.  One by one, I called my friends in Arkansas to share the good news.  My voice quavered and tears of joy ran down my face as I thanked them for all of their support.  This needed to be said, because what if I didn’t make it?    What if something went horribly wrong and I never had the chance to thank them?
     No, just don’t go there.  It’s going to be fine.  No dark thoughts now. 
     Sometimes I only reached answering machines.  I left frantic, overjoyed messages, trying to say all I needed to say as fast as I could.  I didn’t want to be cut off by a beep.
     Never before had my body sustained such an adrenaline rush for such a long period of time.  I tried to calm down.  I took deep breaths, exhaling slowly.
     After everything was packed, I did another exchange.
     Soon—very soon—I’ll never have to do this again.
     In my desk, I kept a temporary hold card for the post office, waiting for just this occasion.  It was all filled out except for the dates, which I filled in with orders to hold my mail until further notice.  Carefully, I clipped it to my mailbox by the door, proud of myself for having the forethought to take care of this detail in anticipation of The Big Day.  This day. 
     I hope I’m not forgetting anything.  Calm down and think.
     Milk and leftovers in the refrigerator went down the kitchen sink.  There were no perishables left in my kitchen to spoil while I was gone.
     Then, I waited, trying not to worry.  I listened to soothing music, and I thanked God.
     My parents knocked at the door.  I opened it and gave Mom a big hug.  We quickly gathered my things and hurried to their car, parked in the closest parking space they could find in the tiny lot.  A guy stepping out of a van said, “Hey, that’s for tenants only.”
     “He’s about to get a transplant,” Dad said “We need to hurry,” 
     An argument with this jerk wasn’t going to ruin this moment for me, so I said nothing.  He did, however, receive my frostiest “go to hell” glare.
     We were on our way.  It was dark.  In a rush and nervous, Dad made a wrong turn and we found ourselves in downtown Sapulpa, a suburb just west of the Arkansas River from where I lived.  Momentary panic set in.  I had never been to downtown Sapulpa, but this wasn’t the time to check it out.
     It didn’t take long for us to get our bearings and we sped along Interstate 44 to Oklahoma City.
     Just relax.  It’s in God’s hands now.  It’s your turn now. Your patience is about to be rewarded.
     From where I sat in the back seat, the dark landscape passed in a blur.  I tried to imagine what would happen to me in the next few days.  So much of it was a blank.  I had asked all the questions I could think of over the preceding months, but now it didn’t seem like enough.
     The car sped southwest under the dark, wide Oklahoma sky.  I hoped we wouldn’t get pulled over by a state trooper, delaying my big appointment with Fate.  I listened to more soothing music on my Walkman and closed my eyes.
     We reached the outskirts of Oklahoma City.  Dad found the exit we needed without any trouble and we found the streets quiet, late on a Sunday night.  A few of the houses we passed still had lights on and I thought of the occupants inside, having a typical Sunday night before starting a new work week, oblivious to this anything-but-typical day in my life.
     Dad found a space in the parking deck and we hurried through a door.  Only a few steps inside was an elevator, which we took to another floor, where the Admitting office was located.  With only a few minutes to spare until that office closed, we rushed through the halls.  If they closed before we arrived, I would have to be admitted through the emergency room, an extra step we didn’t really want to bother with.
      The three of us charged into the large waiting area in Admitting to find it deserted except for a woman behind a desk.  It was late.  She looked tired and would be getting off work in a few minutes.  Our excitement was contagious, which seemed to re-energize her.  It probably wasn’t every day a patient on the verge of receiving an organ transplant sat across the desk from her.  When we told her why I was there, she seemed genuinely happy for me.
     Moments later, I was in an examining room, wearing a hospital gown.  A doctor examined me before two nurses went to work prepping me for surgery. 
     I had been told to bring a bag of dialysis solution and supplies to do an exchange.  Actually, it was only to drain the fluid from my peritoneum from the last exchange I did at home.  This would be the last time I would do this procedure, something that had become as commonplace as brushing my teeth.  I made sure every drop drained out of me.  Never again would I feel that odd sensation of fluid being drained out of my belly through a plastic cord.  And I would be through with two shots a day, too.
     Soon, my abdomen would feel pain and tenderness and God only knew what other types of unfamiliar sensations.

For several years after the transplant, I thought of my donor every time I ate something sweet.  After being diabetic 21 years I had accepted the fact that I would live with it for the rest of my life.  Now, I don’t always think of my donor or the transplant when I eat sweets.  It’s one of the few ways my life has become more “normal” over the years.  But, today and tomorrow are sacred days for me.  I’ll never forget what my family, friends, and the donor all did for me.  I’ll never forget that I am a survivor.