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This is a story detailing my battle with Liver Disease and the events the got me here. It is a story of hope and determination and inspiration.

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Wednesday, December 26, 2012

some days and others

some days, some days are better than other days.
some days I wake up and i feel thirty.
other days, I wake up and i feel like i might nearly be dead.
looking at my ceiling, it looking back at me blankly
searching for an answer in the white on white shadows
i'm so, so tired
but I cannot sleep.
i am a slump
my body hurts, small Sharp little aches
rusted joints ripping away from each other
molar joints pulsating
years upon years of motionless, paralyzed, ennui
it's only been three hours since i've moved to try to piss
forever in my mind.
pray to the buddah, pray the rosary and pray for grace
doze back off with prayer "holy Mary mother of god..." drifting... in and out
light dreams of Siddhartha and the virg morphing into and away from each other.
entertaining and delightful
sleep takes me.
two hours later, i'm refreshed. no more messages to be read on my ceiling
window going from black to grey
god has blessed me with another day
blessed to see the faces i love
maybe make a small difference in their lives.

thank you.

Monday, December 24, 2012

Christmas Eve, a year later.


A year ago tonight I was lying in a hospital bed. Swollen up, bloated, testicles swollen up to disproportionate size, and painful. Calves swollen up like a Soviet peasant woman's, no appetite, pretty pathetic looking all in all. Couldn't even take a Christmas shit. None the less, it was the best Christmas gift I could of ever gotten.

At Thanksgiving, I told my family and friends that I hoped to be in the hospital during Christmas. An odd wish to be sure, it was a req8est that came true. On December the 8th I was lucky enough to be given a new liver and a new lease on life. As I lay there post-surgery I was hoping for no visitors the next day. My wife and kids wouldn't be there, I knew that much. So seeing other folks I loved would make their absence that much more painful. Nearly two weeks early I was sedated, my cirrhotic, dried gourd like liver was pulled from my body and someone, with a bigger heart than mine, someone that died; someone that left other people behind; someone with a much healthier liver gave me the gift of a second chance.

My room Christmas Eve was pretty much like any other budget hotel room with the exception of the thousands upon thousands of dollars of medical equipment. There were machines pumping medicines and antibiotics in my arms; electro pads attached to my chest monitoring my heart rate, pulse and blood pressure. There was a hose attached to my neck with a button on it that I could press when the pain got to be too much. Supposedly it gave me a little shot of morphine. I don't know if it worked or not, I suppose it did, I wasn't screaming out in pain, but it wasn't like any shot of morphine that I remembered. Those old timey shots really shut me down and that wasn't happening Christmas Eve night a year ago.

Tonight, a year later, I realize what a lucky bastard I am. Actually it didn't take a year to realize it, I'm aware of it every waking moment. I don't deserve to be here, but I am, I have a purpose, my work here isn't finished. My two kids, my two ornery, loving, loud, wonderful, sometimes self-absorbed, witty beyond belief children are upstairs sleeping soundly dreaming of tomorrow morning.

I have a debt of gratitude that I'll never be able to repay.

Thank you.

Merry Christmas and God Bless.

Robert

Wednesday, December 19, 2012

Three Square Meals a Day (off topic)


My recent post about being accused of larceny has gotten me thinking about going to jail. About the couple few times I went to jail, about the time I was walking down railroad tracks in Miamiville and my Dad told me he might be going to jail. Got me thinking about visiting folks in jail. Mostly, I thought about my Uncle Larry and Norwood Jail.

 
Norwood Jail was kind of sort of straight out of Mayberry, North Carolina, USA. But it wasn't really. It was in the sense that it was a small jail, in the city hall, in a small town, but not a country a town. A city town. Norwood was odd. It was an egg yolk city surrounded by Cincinnati, industrial in makeup, neighborhoody, narrow-minded and beautiful all at once. It was a town, city that had too much money and didn't know what to do with thanks to GM, US Playing Cards and a host of other heavy manufacturing companies. A great tax base. So the city fathers built a new state of the art high school with a computer facility that rivaled small colleges; a radio station, a television station and a planetarium. All of which was used by less than one percent of the school's population because we were more interested in smoking pot, skipping school, chasing girls and spending time in vo-tech. We had our own public works, pools, pretty good parks, a real tank in what tried to pass as a public square and our own Mayor's court. Where my uncle, the Mayor presided and my other uncle got to spend time in jail. Presumably sent there by his brother in law. Please, reader, keep in mind, this is all hearsay; I wasn't there to witness it myself. So I'm passing down an oral tradition I've heard across rooms and in bar rooms while sitting on stools talking about my relatively famous and infamous uncles.

My point is the town had some money, at the time and it did some great things with it that went underutilized. We had a great football stadium with a constantly losing team, parks with pools, and an overly attentive and completely bored police department. They didn't have a state of the art jail. The jail... the jail was awesome. I spent at least three nights there, not all in a row, three separate nights and not all of them full, I suspect two of them weren't even documented. I was just dragged in for being a general nuisance and pain in the ass and made to set in a cell, forced to have a teen-ager "time out".

 

As the story goes one of my Uncles, we'll call him Otis, had a penchant for partying it up a bit, flying off the handle a bit, driving too carelessly on the rare occasion, being in the middle of a brawl everyonceinawhile, pulling a gun on someone now and again and in general being sort of a trouble maker. Ahhhh.... role models. He scared the living shit out of me. Terrified me. One look from Uncle Lar... er Otis and you'd march right out of the room. It was great being a spectator, but if got caught in his net, well, look out. Or so I'm told. Generally, he'd just pick me up by my feet, swing me around, shake me up and down and hug me so hard I could feel a turd trying to squeak out of me ass. I loved him.

 

Well the other uncle was a role model of another sort, at least from where I was standing as little boy. Well dressed, articulate, important and all knowing. He didn't squeeze me till my eyes popped out but I got hugs and treated with respect and thoughtfulness. He was just plain nice, and filled with patience. I loved him too in a different kind of way. I saw the best of both men as a little boy.

So, later in life, when I was gett'n into trouble, wearing leather jackets, pierced up, sporting Mohawks and in general doing my best to be a social misfit, every once in a while the town's "undercover" cop would pull over, take his gun off and asking me to "take a shot". Apparently he thought I was tougher than I thought I was. I never "took a shot". But he would drag me in and I get to sit in that cell for a while.

I thought about both those old boys. I was in there town, smarting off like one, wondering what it'd be like in front of the other in "Mayor's Court". I never got the opportunity to find out what that was like because I was always released in the morning or another town's Police came to pick me up for some warrant and minor infraction. In an odd sort of way, it was reassuring, sitting in a Mayberryeqsue jail cell. One of my uncle’s names scrawled across the wall announcing he was here the other residing over the bench. If I was there long enough I got served what I was told was Norwood Jail standard meal rations. Two White Castle hamburgers and a small cup of coffee.

If I'm misfortunate enough to spend sometime in the Natick Jail I wonder if I'll feel so reassured. It's been a long time since I got to "cool" off and I'm hoping I don't have to anytime soon.




Sunday, December 16, 2012

Walk down the road.


A slide show of my journey too, during and after a liver transplant. Warning: Some of the pics aren't pretty.

Tuesday, December 11, 2012

Waking up and being thankful.

 
As non-awesome this moment in time might appear this is actually one of the best moments of my life. It sounds like a cliche when you say... almost as awesome as when as when my kid was born, but actually yes. It was almost as awesome. Almost as awesome because I was going to be around awhile to see them grow up.
This pic was taken about 30 or 40 minutes after they pulled the tube from my throat.
 

Wake Up Call

 
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Four or five seconds had passed since I was put under, my eyes where closed and I could hear muffled voices coming from another room. I couldn't tell how many, whether they were men or women. The voices where harmonic and reassuring. I was comfortable, warm all snuggly. Consciously I assumed I was just on the fringe of deeper sedation. I was happy cozy and relaxed. I didn’t know where I was, wrapped in a snuggie, in a womb like state, it was perfection. Completely cozy and peaceful. Then the lights came on.

 

Abruptly my eyes opened, the light was soft and incandescent. What the fuck?! They just put me under, why were they waking me? Not another reject, I’ve only been under a matter of minutes. My mind raced, I tried to talk, and I couldn’t speak. I had something in my throat, in my nose, IV’s in my arms and neck. Electronic sensors taped to my body, pulse indicators on my fingers. Shit. I was annoyed, why was I being pulled out of my beautiful peaceful slumber. Something went wrong! Slowly I realized the nurses and doctor’s hovering over me weren’t flustered or freaked out. They seemed calm and relaxed. They were talking to me, asking me questions that I couldn’t understand. … That’s when I realized I was out of the O.R. and in recovery, the soft lighting, no masks, a sort of normal looking room. Ahhh… I was out. I wondered how it went.

 

The nurses and attendants kept talking to me, asking me questions. Annoying me, they wanted me to do something, I didn’t know what. I think maybe they were asking me if I could hear them. I couldn’t nod or speak. A voice from the door said “Ask him to raise his head.” They didn’t have to ask, as soon as I heard that I raised my head so fast and so high off the pillow they laughed and immediately went into action. Tubes were removed from my throat and nose, sensors where removed and replaced with others. They asked me to raise my head again, I couldn’t, that first head raise took every ounce of energy I had.

 

They asked me to speak, I couldn’t. I kept trying to say water, I don’t know if my mouth moved, I only know no sound came out. The people around me look at me confused, I saw my brother. I tried to mouth the word water. Nothing. That’s when I realized I wasn’t breathing. I don’t know how long it’d been since I took a breath but I felt like I needed oxygen, now. I breathed in, nothing happened, I tried again, still nothing. Now panic set in. Did I go through all this just to die from suffocation? I’d been shot at, o.ded. stabbed, wrecked multiple motorcycles and hit by a car. I didn’t want to go out like this! The medical staff just worked around me nonchalantly as if everything was okay. I tried screaming and nothing came out. I tried flailing around and my body didn’t move. I could feel the oxygen depletion taking its toll. Crazy thoughts ran through my mind, would I come out of this, would I send my life as a vegetable, roaming the minds memories? Finally after what felt like hours but I’m sure was only minutes I was able to take a breath. It was like an anti-plunge, rising rapidly from the depths of cold water and spewing out into the atmosphere gasping for air. I’m sure the reality was a small breath of air, but what a relief for me.

 

I looked around the room the medical staff and my brother looking back at me. They tried propping me up, asking me questions. I couldn’t speak, I wanted water, after scribbling nonsense on a pad trying to write the word water and the symbol for H20 I was finally able to mouth the word water while pointing at my mouth.

 

They allowed my brother to swab my mouth and lips with a sponge with enough water on it that wouldn’t satisfy a bird. Damn, I was thirsty.

 

“Mr. Fathman?” one of the surgeons said.

 

I nodded.

 

“The operation was a success. You’re the proud parent of a brand new liver. It couldn’t of gone any better.”

 

I nodded. Gave him the thumbs up. Smiled slightly.

 

I looked at my brother, tried to write 1,4,3 on the pad of paper several times. He looked at me confused. I tried giving him the one, four, three sign with my fingers. Smiling he looked even more confused. He took my hand as I struggled to signal to him and put it on my chest.

 

I was happy. I knew what I was trying to say to him. I love you.

Monday, December 10, 2012

How to meet a new organ.

.
Binders, paperwork, medical devices laid all around and on me as I said goodbye to my mother. Scrubbed up medical personal scurried about and they wheeled me across the hallway to MY operating room.

Being in dozens of "procedural" rooms and seeing television O.R.'s didn't prepare me for what I saw. This place was huge, bright, off white subway tiled, so many pieces of machinery blinking, beeting and hissing, large and small attached to walls, hanging from ceilings, arranged neatly on carts. Bodies moving in different directions, Reassuringly it reminded me of a kitchen. I felt the room had a life of its own, it felt like it was breathing heavy, slowly inhaling and exhaling. Organized chaos a spastic dance. 

I wasn't fazed or panicked in the least, rather at peace. At peace with my maker, at peace with possibly not leaving this room alive. I was resigned to whatever God had in store for me. Laying there with all those anonymous people floating around me I was so, so thankful. My only regret... that I might not be there to see my children grow up. The one small tinge of occasional panic was that. Please let me witness my children's milestones. Please let me be there to help them, pick them up when they fall, offer councel when they're lost. Please, please, please.

With those thoughts running through my head, I was strapped down, my gear was exposed, I was shaved and the "going under" procedure was explained to me. As the doctors and nurses where tidying up their last minute details everything around me slowed down to super slo-mo allowing me to take everything in. The anesthesiologist looking at vials of liquids and reading numbers on charts, docs conferring with each other in a corner, someone asking me what sort of music I want; does it make a difference, I won't be awake to enjoy it, he smiled a big toothy grin. Then I cocked my head and looked behind me and over my shoulder and I saw it.

Two people in scrubs where sitting on opposite sides of a table, in between them a stainless steel bowl sat filled with a slurry of water and ice. I smiled to myself, it was they same sort of bowled I made hollandaise in thousands of times. They seemed to be wearing special gloves. One reached into the ice water and pulled out a sealed plastic bag with a tag and bar code on it. The other cut the bag and spilled the contents out into his hands hovering just above the ice. The two men took turns inspecting it, rolling it over, treating it ever so gently, examining every inch of it. What they were looking for I didn't know. But they seemed to be giving it the same care and tenderness of a new born baby or a rare archeological find.

I knew it was my new liver. With the exception of my children I'd never seen anything so beautiful. It was a warm, soft rosy pink. Looking at it I felt it radiated a soft pink light, it seemed to have an internal light all its own. It was as if I could feel the warmth spilling off it. There was my chance at a second chance. There was a gift. I could feel a tear running down my face.

My chin was gently forces upright, a mask was lowered over my face and I was told to count backwards from ten. Instead, I started saying a Hail Mary for the person that lost their life, the family that lost a loved one.

And I went to sleep