It is officially official.

I just got the call. I'm listed along with 72,381 other people waiting for a liver. My region, officially called region 1 is New England. Wait times are longer here than the national average because of our concentrated demographics. I'm also trying to get listed in region 10, Ohio, Indiana and Michigan. The waitlist is usually shorter there, I have family there the medical center I'm looking at has a great rep for survival rates.

Here is the rub; my Hepatologist doesn't want me to get a liver until I've started Interferon treatment. Apparently studies suggest that survival rate is remarkably better on a transplant patient that doesn't have Hep C. I have a 14% chance of a cure until I hit the 4 week stage of the protocol, if my viral load has changed, meaning subsided my cure percentage jumps to 59%. Not bad odds if that happens. The dilemma is what do I do if I get offered a liver two weeks into my interferon treatment? Do I turn it down and hope to get a liver later? Do I take it, hope for the best and hope the cure will take after the transplant? What would you do? What would you suggest?

On another note, I'll be in Indie the week of the 12th and I'll need a chaperone while I'm the hospital just in case something happens and to show the staff that I have the proper support during recovery. If you could spare a day, sitting around a hospital waiting room, possibly going to a couple of seminars holding my hand while I have my prostate examined... Oh, wait. Wrong tests. Anyway, if you can help, you know how to get a hold of me.

Best,

Liver Serum

Fluffy CLouds

Miamiville Tavern

The first couple of nights living at the river camp were awesome. The only memory I have of that first weekend is lying in bed, Sunday evening with my dad and step mom watching some scary 30 minute TV show. I got to eat good humor bars until I got sick. I think I had seven. Heaven.

As soon as I moved in Dad decided to move us out to Indiana, I don’t know why, I think possibly the township was buying up the land,  I know they wanted to live a homesteading life style,  maybe that was it. We had about eight weeks til we moved, so I had the days at river house to myself, everyone was gone to work and I didn’t really need a baby sitter, I don’t think we could find one close enough anyway. There was lots to do, reading, I was big into reading, there wasn’t a library around so I read the same books over and over again. Of course there was Jonathon Livingston Seagull, or JLS as it was known in our circles, then there was “The Day of the Jackall, “Open Marriage” “the French Lieutenants Woman” and of course the Sears and Roebuck catalog that I’d peruse on the roof of the house for hours. Once I was done with our small steak of chewed up paperbacks, I’d start all over. I built a raft out of some oil drums with my cousin that was always fun for an hour, floating down the river haphazardly. Unfortunately dragging it back up river really sucked, getting stuck on rocks and sand banks, I could ride horses, my motorcycle, hike in the woods, play with the dogs or listen to music. Sometimes I’d ride over to the gravel pits and just sit on a hill watching the trucks come and go, conveyors convey and machinery do whatever it was designed to do.

It really wasn’t a bad little life style at all except for the fact that I was alone until about five o’clock every day. Typically I’d meet my dad over at the Miamiville Tavern. Probably a mile and a half down our old dirt road, over the car bridge and into the sleepy little town. I’d ride a horse if I knew there might be people over there I wanted to show off in front of, but that always meant I had to ride back. If I walked, I could drive back with my dad, but it made me feel especially cool sitting on top of a huge mare clippity clopping down Center Street. There wasn’t much to that town, a post office, deli-grocery store, a few auto repair shops, junkers all cluttering their yards and a clinical research lab that tested products on animals, back in the 70’s no one seemed to mind the occasional screeching of the chimps. Odd place to hear primates in the night, south western Ohio.

We spent most of our time in at the Tavern, it was actually an old federalist colonial revival style house built sometime in the 19th century. A beaten up Hudephol sign hung off the front of the building. The only illumination in town at night, it seemed sort of

disrespectful to the building. The upper floors housed dirty little apartments for rent by the week while the first floor was a maze of rooms making up the Tavern. There was the main bar room which really didn’t have any real identifying characteristics. It was a bar room, cheaply made with unadorned walls except for a poster of King Tut, Cincinnati Zoo’s most famous gorilla. Of course there was the thoughtlessly hung marketing material behind the back bar. Even as a little kid I knew this place was a shit hole and soulless, by eleven I’d been in a few bar rooms, the Engine Company, Jimmy’s Tap Room, The Pour House, I thought they all kicked ass compared to this little bar. Like a lot of joints of its ilk it smelled of piss and stale beer with the underlying bouquet of last night’s poorly cleaned up throw up. Forget about the bathroom, a rusty, leaking porcelain mess scrawled with words and phrases I’d yet to learn the meanings of. But beggars can’t be choosers so this is where I met my dad three to five afternoons a week.

WTF?!

The bartenders didn’t mind when I hung out inside if I got there before my dad. No one really cared about a kid spinning on a bar stool, trying to figure out the dirty jokes printed on cheesy cocktail napkins while drinking pops and eating Vienna sausages. Other seats where taken up by tired old men spending their social security checks, nursing their watered down drinks or warm beer, mumbling about their glory days or telling the same worn-out jokes they told yesterday. There would be a couple of bikers out for a ride and a couple of hippie hipsters “gett’n out of the city man”, all of 35 minutes away. The hippies pitched tents where they could, smoked their pot, played out of tune guitars then spend those sticky Miami Valley afternoons in the stale air conditioning air of the Miamiville Tavern. Every once in a while my dad would befriend one or six of them and they’d end up at our place for beers and food.

As soon as my dad arrived, he’d order a gimlet and we’d head into the back room where the worn out pool table sat. Another characterless room with over flowing plastic ash trays, last night’s cocktail glasses with half smoked cigarette butts and chewed up straws all floating together in a liquidy discolored mess. The dirty window panes lined with nearly empty beer bottles a half-eaten sandwich, empty chip bags and overall just a general mess. The reminders of last nights, or the night before, or who knows when partying.

If there was a game going on my dad would line up his quarters for his turn and wander around the Tavern chatting it up, telling jokes and doing card tricks for drinks. Once he got on the table he pretty much owned it, unless he ended up playing doubles with someone that really sucked. Money would change hands, I’d run for scratched cue balls and rack them for the boys for cokes and pickled eggs. We knew everyone that came into that dark little pool room. Assorted carpenters, mechanics, quarrymen and the occasional suit from the research lab, if a stranger came in my dad and the locals would generally try to pull a hustle on them, at least I think they did. I can remember several altercations but nothing ever came to blows.

One super-hot July day the house phone rang, it was my dad and he was planning on cutting out of work early… did I want to meet him in at the Tavern? Of course I did! Anything was better than scanning though the latest issue of Mother Earth News, reading about the newest composting technology, how to make a worm bin or how solar power is going to take the country by storm over the next 5 years. I hurried my little ass over there, bought a coke and some Grippos and planted myself in the pool room watching my dad sink ball after ball with three other guys. Shortly some long haired, goateed, Jesus looking dude darted into the room. I’d seen him before, didn’t know his name so I always thought of him as the Gypsy in my head. He made an impression because he wore an ear ring. I didn’t know many men with ear rings. I thought they were either pirates, gypsies or sissies. This guy didn’t look like a sissy though; he looked pretty tough, short and stout. He was always covered in grey dust from working in one of the quarries. A pack of Viceroys folded back into the sleeve of his t-shirt exposing the head of a man smoking a cigarette. I liked this guy and thought he was cool. He wasn’t today though, he seemed really nervous and jittery, looking around, pacing, going into the main bar and poking his head out the door. The other men in the room gave him a greeting in the form of a nod and that was about it.

He started to calm down after about 20 minutes, sitting on a stool, sipping a beer. That’s when it happened. A man came in the room with a determined stride wearing a leather jacket, gloves and a full face motorcycle helmet. Gypsy dude looked panicked and lunged for the door, leather jacket man tripped him up, grabbed a pool stick and cracked him on the left side of his head with the thick end, and dragging him back in the room by his t he flipped him over and gave him one hard smart crack right in the middle of face. Blood spurted out of the gypsy’s nose and it looked like his front teeth were bent up and bleeding too. It happened all so fast, my dad and the boys dropped their pool game and started to come to the gypsy’s defense when motorcycle dude pulled off his helmet throwing it at gypsy as he laid there whining and whimpering “Don’t hurt me, don’t hurt me…. I’m sorry man…” Motorcycle man was Cody from Camp Denison; he’d been to the river house a lot. I liked Cody; he had an ear ring bigger and golder than gypsy dude. He was always super nice to me, loaning me records and bringing me candy.

“This mother fucker just drove by our place and yelled “What’s going on niggers!!??” flipped us the bird when we were sitting on the porch!” Cody had his boot on the dude’s leg, hurting him and holding him down at the same time. “My cousin’s kids where sitting on that porch, they don’t need to hear that shit!!” Cody gestured with the pool stick which had now been broken on the gypsy man’s face. He flinched and whimpered as he pressed his foot into him harder.

“Don’t hurt me man, don’t hurt me I’m sorry, I’m fucked up, I fucked up, I’ve been drinking all day I’m stoned…” he sniveled though his hands as he gingerly clutched and cupped his mouth. He was pathetic and scared, it was pitiful to watch but I was mesmerized.

“You’re lucky my cousin wasn’t there or you’d be looking down the end of a shotgun right now Motherfucker!” Cody gestured for him to be quiet, my dad said “Do what you got to do; I won’t try to stop you.” Then my dad drug a stool in front of the open door and sat there, twirling his pool cue from hand to hand sort of absentminded like.

Cody pulled the man to his feet and held him against the wall with his forearm, he grabbed the cue ball, gypsy whimpered as Cody pressed it into his mouth bending his teeth back further into his head, and I could hear his teeth squeak or I imagine I could. I winced as Cody backed off a little as gypsy man clutched his teeth, begging Cody not to hurt him, apologizing for being such an ass hole.

Cody let the dude slide down the wall to floor and started walking around the pool room gathering glasses and beer bottles, emptying their contents into a tall pint glass, butts, beer and cocktails from who knows when. He stirred it up with a straw as he started to hack and wheeze until he coughed up a slimy greasy loogie. Cody looked wildly at the gypsy who was slouched over and crying a bit. Cody passed the glass around, every one spit into except my dad, Cody gestured at me, and my dad shook his head signaling that that might be inappropriate. Gypsy dude was dragged to his feet and Cody forced the glass to his lips. “You got two choices boy, either drink this or we go outside and you getting whopped to an inch of your life.” Gypsy begged to be let go, promised never to do use the word again, Cody just stood there stoically, motioning the glass closer to his lips. “Your choice boy.” Gypsy was trapped and he resigned, all fight went out of him as he took a sip, gagged and spit. Cody held the white cue ball up to his mouth, threatening, smiling, and looking wild eyed and a bit crazy. I really liked Cody, he took no shit. “Drink it!” Gypsy opened up his mouth wide, though back the “cocktail” all in one swoop, gagging and spitting and hacking. Like a trapped animal, he looked around the room; he gagged, clutched his mouth, choked and threw up all over the pool table as my Dad dragged me out of the bar and into his truck.

I was scared for gypsy dude and was afraid to see him get hurt more, but I didn’t like him anymore either. I didn’t like him at all. Everything I thought was cool about him faded away with a blink. I didn’t care if he got hurt, I just didn’t want to see it and I was happy we were on our way home. I felt he was probably getting what he deserved. My dad didn’t look very phased so I calmed down a bit. I didn’t like that word he used either. I had experience with it; I heard it a lot at school, in the neighborhood and heard it inside my grandfather’s house. We’d be watching the news, footage would come on about some civil rights march, or riots somewhere around the country and I’d hear my grandfather say nigger this or nigger that, I knew it was a bad word, a word used to make people mad or hurt their feelings so I was surprised when I heard my Irish Granddad use it. I asked my dad about it, if it was right to call those folks nigger? He told me it wasn’t right and the people that used that word where afraid, weak and untrusting. “What should I call those people then dad?” “Negro” he said. I shrugged and walked away more confused than ever. The next day at school I went up to some black kid in the yard and said “What do you want me to call you… nigger or negro?” He just sort of looked at me kind of puzzled and said “Why don’t you just call me Johnny.” And I did.

That’s pretty much who I thought about on that ride down the dirt road. The lesson I learned that day in the school yard with Johnny and the lesson I learned in the bar room with Cody.

Liver Transplant List

Ellen my transplant advocate called and the eval board reviewed my case today. Tomorrow, I'll be offically on the transplant list. The wait to start waiting has begun. Still processing.

Best,
LSD

Indiana want me...

Just got word that I can go to Indie the week of September 12 to get evaled for a new liver. Yippee!

A poke near the prick.

 
The Pulmonologist and his team were able to get me scheduled today to have a cardiac catheter procedure which was super awesome because it was the last step (hopefully) in getting listed. If it wasn't today, it might have been weeks before they could have gotten me in or there was a cancelation.

So I arrived at two 0'clock and was briefed with everything that could go wrong and signed consent. I had the option of left or right groin or possibly the neck. The plan was to put an IV in me and run a thin tube up the artery to the right chamber of my heart at which point they'd blow up a small balloon and test for oxygen levels. Sounds easy enough, hell, isn't there an APP for that? Doc didn't like doing the neck because apparently there is a higher risk for bleeding. I get called into the back fairly quickly; change into my Johnnie, wrong, back to rechange. Didn’t realize one could commit a Johnny Faux Pas. I imagined all the nurses and techies laughing at my expense as I sashayed though the room. I'm probably the only person that could put a Johnny on incorrectly.

I was led to a gurney, got an IV, some more talking to and wheeled into the procedure room where there are about 6 or 8 people in scrubs milling about waiting to help pretending to prep equipment.

Of course why allow me to leave with any shred of dignity so they decide to go into the right groin with the wiring. They begin to unwrap all the sterilized tools of their trade and special sheets and coverings and what not and then everyone gathers around for the ritual "unveiling". And by unveiling me mean exposing of the penis, the unit, the baby maker, the gristle missile... and let the shaving begin. Of course the left side has to be cleaned up too, just in case things don't work out on the right. Admittedly it was an odd sensation having a young man perform the task of shaving me below the belt but all in the name of getting a new liver.

Sedative of some sort went into the IV and the rest was a bit blurry, nothing like the experience the previous week with the 8" needle. It all went quickly and without a hitch. Apparently Doctor C had had the skill of a journeyman electrician in running that wire though my body up to my heart. Hardly felt a thing and was told afterward that I mindlessly sang Brittney Spears tunes. They patched me up, covered me up and sent me into recovery.

After my wife arrive Doctor C came out and told us I didn't have Pulmonary Hypertension and that he'd be letting the board know ASAP and if everything went right I could get listed for a new liver on Wednesday. Relief. I called Ellen, my transplant coordinator, asked her to put my paperwork in front of the board on Wednesday then had the best sleep I had for months.

Roller coaster off the tracks.

I have pulmonary hypertension, so I saw a lung doc this morning. Up early and out of the house at seven, spoke to three pulmonologist before they told me i was so borderline that they want to do a more precise test. No storyland today with the kids, maybe we can see the skirt movie Instead. This afternoon they're going to shove a catheter in my neck or groin and shove a wire into the right chamber of my heart to measure the oxygen levels. The good news is the will know the results right away. Result one, no hypertension, move forward get listed; result two, hypertension 8 to 12 weeks before I can possibly get listed. Arggggg!!!