By George Hunt

….. one day you will overcome what you’re going through now and it will become part of someone else’s survival guide. “

The room is always cold.  Heated blankets help at first, but eventually render themselves useless after fifteen minutes.  Darkness permeated the room.  My eyes were always well equipped to the dark.  A sense of calm would fall over me listening to the consistent sounds of the machines either pumping in fluids or taking them out.  You see fear truly did not set in until the overhead light turned on.  Light exposed everything.  Even my darkest secret(s).  I could expect that light every four hours.

I was awake at this particular moment because the bell from the elevator was about to chime.  Visiting hours began at 9:00AM, but this visitor had special privileges.  Every morning at exactly 7:30AM, my father would step off the elevator; migrate past the nurse’s station and into my room.  Dad was a pro.  Been there before.  He was merely no visitor.  Rules did not apply to him.  How I cherished the anticipation of his arrival every morning.  It gave me solace to an otherwise confusing world.

Three days earlier, I had been on the operating table for what they had called the surgery to end all surgeries.  An attempt to construct a man-made vessel that would allow me to straight Cath through my abdomen.  They called it an “Indiana Pouch”.  At the time, my then current diversion had run its course.  Twenty-two surgeries, countless procedures, bi-annual well visits, endless poking/prodding and gallons of donated blood later I lay in a hospital bed slowly withering away.

Doctors and Nurses could not explain it.  For the surgery was a success.  Yet, I was deteriorating.  Seventy-seven pounds at seventeen years of age.  The light interrupts the exchange with my father as I slowly take a deep breath.  Everyone can see, but me.  Blinded by fear, shame, and pain I lie there while they talk through me.  Blood draw, change of dressing, IV flush and a quick empty of the urine bag.  It is time for me to hit the Morphine pump.  The only thing I controlled at the time.  The light turns off.  I finally exhale.  Whispers of my prognosis given to my father.   

He was early this particular morning.  “Son, its Dad.  Good morning.”  A gentle kiss of the forehead.  A deep worrisome stare, he softly brushes away my hair from my forehead to see my face.  I simply lay there without expression.  He leaves for a brief moment and returns with a wheelchair.

I have four drainage tubes.  One in both kidneys, one in my new bladder and one in my stomach.  I adorn a fancy urine bag affixed to my left leg attached to a catheter penetrating my abdomen.  I was given an epidural in which controls the flow of morphine when pain becomes simply too much to bare. My IV has two suspending bags.  One filled with saline, the other a flush solution incase medication needs to be administered quickly.

My Father disconnects and reconnects what he must in order to transport me down the hall.  He lifts me gently from the bed and places me in the wheelchair. 

He knows.  I can feel it. 

We travel the short distance down the hall to the end of the corridor where a larger, more private shower exists.  He positions the wheelchair in front of the sink where he can see me and I see him.  He washes my face with a washcloth and begins lathering it with shaving cream.  Gently he moves my chin to the side and with a soft slow stroke begins the process of removing the adolescent three-day stubble from my face.

My Father’s hand shakes.  Tears fill his eyes and begin rolling down his cheeks.  Softly he turns and whispers in my ear, “We have come too far to give up now.” 

Succumbed to my own self-pity feeling sorry for myself, I finally recognized that this fight had not been fought alone.  I gave up, but my father never gave up on me.  Thank you for saving my life Dad.  You will forever be my HERO.

NO MATTER HOW YOU FEEL, DRESS UP, SHOW UP AND NEVER GIVE UP.

My name is George Hunt III and I was born on an Air Force Base in Altus, Oklahoma in 1977.  First born to George Jr and Lois of Brook Park, Ohio.  I have five siblings.  All of whom still reside near the Cleveland, Ohio area.

Bladder Exstrophy was a term foreign to most individuals in the late seventies let alone an Air Force base hospital in the middle of nowhere.  Four children were born within the same week as I, all diagnosed with bladder exstrophy.  I was the only one whom survived.  The cause of my birth defect allegedly linked to a morning sickness pill given to women staying on the base. 

Like most patients with bladder exstrophy, I too dealt with exstrophy-epispadias as well as pelvic separation.  The medical team did what they could to keep me alive.  Not only were they successful, but they also had the wherewithal to not make things worse and get me to a specialist whom dealt with this form of birth defect(s).  I am forever grateful for all they had done.

Enter, Rainbow Babies and Children’s Hospital, Cleveland Ohio.  I was so young.  Nothing compared to the innocence of newly married twenty-year-old high school sweethearts whom should have been elated in welcoming their first-born son.  Instead, the future marred in fear, doubt and anger.  I was where we needed to be.  We just did not know it at the time.  TIME.  Funny thing about time.  Time is the one thing you cannot get back.  Our plan was to borrow as much of it as we could. 

The internal closure of the bladder and pelvic surgeries performed in Oklahoma were a success, but the issue specifically with me was the bladder neck reconstruction surgery.  Many attempts had been made, but long-term continence had not been achieved.

I wore a diaper until the age of ten.  The sphincter muscle was a challenge.  We could not get it right.  I went back and forth with different variations of urostomy bags.  I hated them.  I would much rather wear a diaper.  Urostomy bags just were not conducive for a little boy who loved sports and rough housing.  Wearing a diaper allowed me to roam free. 

Robert Kay, MD is a saint.  He not only treated me as if I were his only patient, but also counseled my father through some of the hardest times of his life.  Dr. Kay made the move to the Children’s Hospital at the Cleveland Clinic, from Rainbow Babies and Children’s Hospital and I went with him.  “Georgie”, he always called me Georgie.  “I think we found a solution to our problem.  No more bags, no more diapers.” 

Like most things with bladder exstrophy, there is always a catch.  The plan was to disconnect my ureters from my kidneys and then reconnect them to my bowel.  Again, I was so young.  At that time, the conversation was really with my father.  It was nice that they played the game and made me feel like I was involved.  My father was great explaining all the different things that were about to happen.  We were going to have the procedure done during Halloween.  I would be in the hospital for three weeks.

When your ureters are connected to your bowel, everything that comes out is liquid.  EVERYTHING.  It is a different and weird feeling.  You get used to it.  The good, sports all day long.  Basketball, Baseball, Swimming and Wrestling.  Playing with my friends, riding bikes and simply being a kid.  No more wetting my pants.  No more diapers. The bad, I would have the occasional accident.  BLOWOUTS.  There is a lot going on back there.  Stool mixed with urine coupled with gas tends to lead to not so pleasant things.  You need to eat right, follow a disciplined bathroom schedule and above all else avoid direct contact with the abdomen.  Easier said than done when your ten years of age.

Kids are the cruelest individuals in the world.  Not by choice of course.   They simply do not know any better.  The cold, biased, calculated, yet direct, unfiltered honesty is purer than the color of snow.  Their words hurt more than any needle in which penetrated my body.  It left internal scares deeper than the visible ones running down the length of my abdomen. I wish I could go back and tell that little boy it was going to be okay.  That he was going to thrive.  That the trials and tribulations he would endure essentially would lend itself to the foundation of the man he would become.  Unfortunately, it was a dark time.  A lonely time.  Invaluable lessons I would need to navigate through my own accord.  I would not wish it on any one.

Cancer.  Colon Cancer to be specific.  At seventeen years of age, once again my father, doctor and I were at a crossroads.  For ten years, I had managed to get through adolescence, puberty and high school with my current diversion.  Not to pat myself on the pack, but I was doing pretty damn well.  I was on the varsity wrestling team, had many friends, popular with the ladies and enjoyed music.  So much so that I would actually receive a full scholarship to Cleveland State University studying Music Therapy. (Unfortunately, CSU discontinued the program and I had to alter my major).  

“Georgie, do you have one last surgery in ya?”  Not really, I thought to myself.  I mean what is wrong.  This thing is working.  If it is not broken, do not fix it.  It all comes back to time.  It has always been about time.  With bladder exstrophy patients you get to a point where you have gone as far as you can go.  You need to roll with the cards you have been dealt.  Lay them on the table and hope you come out on top.  It was time for me to discard and see which hand I would be playing.  Good news.  I was able to choose which cards I was going to play.

My current diversion worked well.  Almost too well.  Unfortunately, there was one large drawback.  The acid in my urine was toxic to the lining in both my bowel and intestines.  Polyps would form along the lining of my intestines and those polyps could turn cancerous.  At the time, I would have bi-annual sigmoidoscopies.  To my knowledge this was simply preventative, another procedure to add to the repertoire.  Apparently, it was more proactive.  It was not a question of if, but of when polyps would be discovered.         

Ultimately, the card I chose was new.  The scariest part was that my doctor, the single most important influence in my life other than my father would not be performing my surgery.  “I’m getting to old.”  Dr. Kay remarked when he saw my face after the bombshell he lay before me.  “Georgie, you’re just too big.  My back would not hold up during the surgery.”

Ladies and Gentlemen, Jonathan Ross, MD.  Dr. Ross was young, tall, good looking and quite.  He stood every time I met him.  Would never sit down.  He did not have the bedside manner that Dr. Kay had, but how could he?  We did not have the history that Dr. Kay and I had.  Moreover, he hardly knew me.  What he did have was confidence and swagger.  Very specific as to how he was going to conduct business and he ALWAYS explained in detail what was about to happen.  I like that about Dr. Ross.  Good, bad or indifferent, I knew what was about to happen.

Christmas 1994.  I received my Indiana Pouch.  Holds 1500cc’s of urine.  Bet you did not know that (a normal bladder holds roughly 500cc’s).  My hospital visit lasted much longer this time around.  Through it all, I am better because of it.  My doctors were amazing and the countless nurses I would encounter over the years even better.  Both Robert Kay, MD and Johnathan Ross, MD saved my life.  I am forever grateful and indebted to them both for their mastery, skills, love and kindness.  Thank you.

The next chapter in my life is really more about me the man than it is about bladder exstrophy.  As I said earlier, bladder exstrophy is a small subset of my existence.  I do not let it define me.   

I have been married to my smoking hot, high school sweetheart for twenty-three glorious years.  She is my entire world.  I simply would be nothing if it were not for her.  I thank God every day that she did not walk away from me when I broke up with her that dark night in my hospital room late December of 1994. 

Being the father of four amazing children is an absolute joy.  George (20) who is well on his way to changing the world for the better at Michigan State University (MSU).  Has the book smarts of curing cancer one day, but also has the amazing ability to get lost in his own backyard.  Madison (18) jumping knee deep into the Nursing program at Illinois Wesleyan University (IWU), is a strong independent force to save a village from a Forrest fire, yet playfully detracts to sarcasm and hoodie when the spotlight is on her.  Raegan (14) whose soul is pure as gold.  A born nurturer.  The mother hen of our little fantastic FOUR.  Pierce (12) a fearless leader who is genuine, loving and kind.  The heartbeat and innocence of the HUNT Crew.  All my children are special gifts.  Absolute treasures.  The culmination of the love shared with my beautiful wife.  Our legacy.

Sports, Cigars, Politics and Scotch.  Not necessarily in that particular order.  These are my hobbies.  Some would call them vices.  All of which keep me going, make me smile and allow me to enjoy the fruits of our labor.  Currently I am a Regional Manager of a master importer wholesaler of industrial fasteners, MRO/OEM commodities and personal protective equipment (PPE).  I love my job.  I have been employed with the same company for over twenty-five years.  I am proud of the accomplishments made and humbled with the career I have forged.

Bladder Exstrophy is now an event, which happened within my life.  I treat the defect as part of who I am.  I do not let the defect treat me.  I am so looking forward to giving back to the bladder exstrophy community.  Together we will be amazing and do great things.

YOU’RE ALLOWED TO BE DISAPPOINTED.  YOU’RE ALLOWED TO BE ANGRY.  YOU’RE ALLOWED TO BE SCARED.  YOU’RE ALLOWED TO CRY.  BUT YOU ARE NOT ALLOWED TO GIVE UP.

…our scars tell a story.  They remind us of when life tried to break us, but failed.

© 2024 George Hunt & Courage to Shine™

To contact George you can do so by emailing him at contact@courage-to-shine.org please make sure you put George Hunt in the subject lline