Header Intro

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, September 21, 2011

Double Disappointment

Today was a king shit day. Shittiest of the shitty days. Two things happened...

I didn't get listed in Indie...yet... only a matter of time. My eval paperwork didn't even go in front of the board due to some "miscommuication" or in the words of Zepplin, Communication Breakdown.

Secondly, I desperately am looking for someone to watch my kids for a couple of weeks in late October and early November. Otherwise, I'll be traveling back to New England, going off the list and potentially missing a transplant oppurtunity. If you have any ideas, please let me know.

Saturday, September 10, 2011

Utopia is spelled LOOKOUT INDIANA

The summer on the river camp was running down and September was just around the corner. That meant a new school, new friends, new house and a new life about an hour outside of the city. Not knowing where we were moving to and wanting to get me acquainted with our new environment we took a ride out to check out the lay of the land as it was. The house was up a dirt and gravel road, not unlike the road we’d be leaving behind; only this road had a name. East Country Road 950 North?! Jesus I was disappointed with that name and lack of originality, what would have been wrong with Deliverance Lane, Pig Slaughter Avenue, Rooster Kill Circle or Boy get ready for misery and an ass whipp’n way? All better choices than E. C. Road 950 N.




Our nearest town, a less than booming metropolis called Lookout, Indiana, USA. And it was Americana at its best. Lookout consisted of a crossroads, about 5 houses and a general store that sold nearly everything. Wanted canned meat, overalls, a shovel, ladies hats, gas (including diesel), t-shirts, spaghetti, and about a million other items. They had it, as well as functioning as the local post office. . It was a dirty little store with two small windows out front covered in gravel dust. Well lit it was not, handy it was. It was an old school convenience store and there were many times my dad was out of beer or smokes or cold cuts and he’d send me up there on the back of a horse or on my motorcycle to grab something. Back then a 12 year old could buy ‘em hassle free.

The properties were an old elderly couple that never cracked a smile or had a friendly word to say. Maybe they were afraid of adding a wrinkle to their wrinkles or maybe they just didn’t like city folk and outsiders, of which we were both. All transactions where done with as little talking as possible and never any questions asked. Eventually I started talking like a local farmer to them, just to see if I could get a reaction? “Looks like rain I’d say” and pretend to spit; "Soy Beans in the back forty ain't doing none to good this year." How about your all’s?” and I’d pretend to spit. Sometimes I’d throw in an English accent… “Care for a wee bit of squeak and giggle from the missus and a spot of tea?” nothing. CB’s were really big back then and occasionally as the old man was taking my money , counting out my change I’d turn to his old stooped over wife sitting behind the counter and lay on here…”What’s your handle? Want to see… err know mine?” and of course I’d pretend to spit. Apparently I thought a lot of farmers spitted. I suppose maybe they suspected I was the young cuss calling and doing prank calls, we had a four way party line on our phone so it was probably pretty easy to narrow down. Prince Albert in can and playing Muskrat Love by the Captain and Tenel was getting tiresome so I eventually just took to burping or making fart noises into the phone.

Of course not being able to see in the future I had no idea what the future had for me, had I known, possibly I’d of run back to my mom begging her to take me back. As it was the property was beautiful, nothing really stood out; every building was tired and beat. In that late august hazy Midwestern humidity and sunshine it looked like Utopia. The house was an exhausted looking one story with six rooms. Three bedrooms, living, dining, a kitchen and a bath. Nothing special or spectacular. The front porch was just one step up from the yard and it was a cistern, only water source. The basement was dark and dank; the builder used old termite infested locust tree trunks to support the house. There was an old barn with a tin roof and red peeling paint that had a few big open spaces for equipment and some small stalls. Chickens, ducks and assorted rusty hand tools occupied the space of our two car door less garage and finally there was an old rabbit hutch sitting down a gentle slope to a spring fed pond.

The property had multiple fields, three varieties of apple trees, peach, plum and pear trees. An asparagus patch and wild rhubarb and parsnips grew all over willy nilly. To me, this was paradise, the farm was eventually populated with seemingly wild dogs, barn cats, several cows, maybe eight horses, goats, runt pigs from down the road, chickens, ducks and one mean ass rooster that stood his ground against anybody. Dogs, larger animals and small children. I used to cackle like a mad man watching that rooster chase down my brother, sister and little cousins.

Tuesday, September 6, 2011

Fat Frank & the Smurfs

Fat Frank & the Smurfs



My belly keeps expanding. It’s uncomfortable, ugly, makes it difficult to breathe and I feel like I’m five or six months pregnant, approximately. I saw nurse K last week and today to see if anything can be done about. My options include muddling along as is, keeping my salt intake low, low, low. Raise my diuretics which will make me pee more; currently after taking the diuretics about an hour afterwards I have to pee every ten minutes for about an hour. That’s a lot of getting up and finding a bathroom, fortunately for me and my brood peeing up against a tree anent no problem. Lastly they could tap me. Sounds like exactly what it is. They take a big ass needle, stick it in my belly and draw out as much fluid as possible. Unfortunately, once you get tapped you generally don’t go back. Also, the fluid generally comes back like a pack of screaming howler monkeys, i.e. full force with a vengeance. Not to mention they suck out a bunch of good proteins an albumium in there as well. So the doc and the nurse decided the best course of action was to raise my diuretics “to the threshold” and see what happens. I’m generally feeling pretty fucking good right now except for this belly that keeps on getting in my way and incites all the female construction workers to cat call me. Why and try to make my life more comfortable right now?

On another note I took the kids to the drive-in Friday night to see the new smurf movie. And yes, it was an excise in suffrage with a two year old repeatedly saying…”Dad can I sit here?”, “Dad can I sit here?”, “Dad can I sit here?” Truly though it was fun, my boy enjoyed it and we had a few laughs the echoed throughout the drive-in. Even the battery dying and having to get jumped while trying to explain to my kid what function the battery performs. I don’t know, but I think sticking with “It supplies electricity to the car.” was vague and general enough that I didn’t sound like an idiot.

I didn’t grow up with the smurfs, so I didn’t know a lot of their history. I knew they were blue, pretty much dressed the same and overall they’d make pretty good neighbors. Learning that Papa smurf had 99 sons and one daughter did sort of creep me out, what do they do about procreation?

Tom and Jerry whacking each other with frying pans to the back of the head, cannons going off in Yosemite Sam’s face and anything from ACME falling on, crushing, pureeing or turning the Wiley Coyote into a walking according was more my speed. I did love the Looney Toons. When I was in the USN I lived off base in beautiful Monterey California with some dude named Jim another Navy guy. Jim would go to work fix computer hardware, come home and suck on the end of a bong until he was completely annihilated. That is all he did. Occasionally I took him to a punk rock show, where he’d watch, mouth agape in a glassy eyed trance trying to stay clear of the pit.

Jim introduced me to another Navy Techie named Fat Frank. Fat Frank also off base and happened to live just down the street from us. I was about 18 and Frank was in his thirties and he had a much better command of the English language the Jim did during a cannabis self-induced stupor so Frank made much better company and I ended up hanging with him quite a bit.

Frank had a guy up in Alameda that he’d go see every month or so and bring back sheets of aqua blue window pane acid. Window pane or Clear light refers to an opaque gelatin sheet containing the LSD dosage, generally no more than a centimeter across. Frank bought a lot and he was generous with what he bought. Previously only doing mushrooms, peyote and morning glory seeds acid tripping seemingly opened some doors for me. I would tell people that eating shrooms was comparable to eating a piece of Mother Nature and eating acid was like eating a smoldering bolt of electricity. After a summer of doing it pretty frequently I thought enough was enough and encouraged folks to steer clear of the LSD, if you had to trip, go natural, but… You don’t have to trip.



Late that fall I took a bit of window pane and mosied on down to Fat Franks house to chill out for a while. The dose just started hitting as I knocked and the door was pulled open by a bare chested, red hat wearing, giant blue Smurf. What the hell, it was Frank! I’ll call him Fatty Smurf. It was Halloween and Frank stripped down to too tight white capris, silly ass white hat and an entire body painted blue. Aka, Fatty Smurf. We sat on his stoop the remainder of the night, tripping, drinking beer and giving out candy to all the kids that were brave enough to venture up to the giant smurf.




I pretty much forgot about Fat Frank the Smurf until I myself saw the Smurf movie and MY belly started to expand, so, can you guess what I might be this Halloween if the Docs can’t get my growing belly under control?

Thursday, September 1, 2011

Ennui is not a city in France

It’s been a while since any posting and it isn’t because there hasn’t been a lot going on. From a medical standpoint, I’m in the middle of the wait. The wait for a liver, the wait to go to Indie, the wait to feel better, it’s going to be a long wait. Overall I’m feeling pretty well, tired, fatigued a general sense of malaise and ennui. Typical I suppose. My biggest hurdle currently is trying to get my Ascites (see how I take ownership) under control.


Ascites is the accumulation of fluid in the belly or abdomen, it can be slight, moderate or severe and the Doc’s use different treatments depending on the ascites. My posting called a pig in the poker details my first experience with the ABDO-Needle. Yuk. I’m probably at the moderate to severe stage, I’ll find out more tomorrow after I see Nurse K. If they can’t get the ascites under control with meds then they’ll “tap” me, no unlike a draft beer. Potentially they could pull out as much as 2 gallons of fluid which translates to 16.68 pounds. I’m slight framed and losing muscle mass so this is not an insignificant number. Two babies, an average sized New York Strip or one big fat Samoa Baby. I feel like I’m carrying someone around inside there, with all the gurgling, fluid running and shifting. If nothing else it has allowed me the opportunity to empathize more with pregos. Standing is an effort, stair walking is an effort, pretty much every fucking thing is an effort and I can’t wait to get tapped or have this fluid defused with meds. Worst case scenario they put in a catheter, so they can pull fluid out on a weekly or twice weekly basis. I suspect I won’t be going there as those folks have significantly higher meld scores than me.

A week from today I’ll be arriving in Cincinnati and I’m looking forward to it. Not having seen most of my family for a long time under different circumstances it would be a super kick ass trip. As it is, I suspect I’ll do some sleeping, eating, visiting and if I’m lucky I’ll get to cook for a few folks.

Then Sunday evening it’s up to Indie for another series of test to try and get listed up there. I’ll keep you posted and if you have any recommendations for restaurants in Cinci or Indie please comment or drop me an email.