Happiness

coming in the morning with pain of war
my hearts beating loud in my sores

My dogs are sounding
But im not going to the door

There is no you and me anymore
lets wash away everything before

I'll walk away and lose my voice
never to say a word evermore
Can't feel my fingers
because of pills and steal
can't feel my fingers
or they're burning in the rain

keep talking I hear you
Even though I shut the door

walking across the mountains
I hear and want to hear more

Somewhat sick this morning
hearts beating in my sore

Can't feel my fingers
because of pills and steal
can't feel my fingers
or they're burning in the rain

grey skin in the mirror
touching hurts like its torn

Can't feel my fingers

Sven the teddy was very Unwell

Sven the teddy was very unwell, he couldn't breath or play or run.  Deep inside Sven's fluff had turned brown and grey.  If not washed thrice weekly someone would toss Sven away.

Sven hated wash day, even before they were begun.  They gave him a little zipper down near his wrist.  That's were they vacuumed out his fluff to throw in the wash. With out his cotton he felt like a popped balloon.  He would wait for hours patiently to his batting to be refilled. But in a couple days it would turn dirty again.

He asked all the other animals if they could lend a little fluff, most were too scared others had a different sort of fluff.  Fluff is very different it would surprise most to know.  Some Fluff is little pellets, other just rags and Steiff bears have excelsior. Sven was made of ordinary non-premium cotton which wasn't special at all.  Any bear could add a little cotton fluff, but for bears like Sven it was the only stuff. 

His days unhappy Sven worked to get through each one.  Even the days without cleaning were uncomfortable.  His zipper snagged his fur and even being touched hurt sometimes. He hid out from the other animals, none new what to say.  He didn't like being treated different or other seeing him as sick.  Most of all he hated hurting the bear closest to him when he when for a cleaning.

After month He thought of hiding beneath the sofa or letting the dog tear him up. The Cleaners often damaged animals and one was lost every month.  Some came in confused and after a week their time was up.  Sven often wanted to walk away without his fluff but he was scared of that too.

One day he awoke with a new seem of stitching across his belly and the prickly pains of being sewn up.  He learned he had been taken to the seamstress who had packed him full with her own bag of fluff.  Then Sven wasn't a sick toy and he could play all he liked.

A story of dialysis, gencon and gary gygax's dice part 7

For us this was joy, Brian excluded.  Derek and I loved these games, loved the dark and sound.  Even the art and Marque titles were well loved friends. Our Third, Brian, milled around the pinball play area looking forlorn.  We were sorry , to a small degree, but too excited to worry.

Black Tiger and Rastan fought with us and Spy hunter speed and swam.  Moon Patrol moved forward with every quarters, much to Billy Mitchell's chagrin.  Derek and I tried for fastest completion on Cadash but I lost interest when Star Castles powered to life.  This was my game, my childhood my first love.  The game I rode my bike across town for, collected pennies for.  Really I don't know how long I played but my back hurt when I heard the Derek begin to yell. 

Off in a corner a Chapman stick player had been tapping out the themes to several video games.  Apparently Derek insisted on accompanying him but often changed the tune to something off Celtic frost's tragic serenades. Then Brian swung wild with an air hockey paddle and the puck exploded into flight. Clattering off the back glass players ducked in fright.  Arising in anger and scanning for the source, they found Brian smiling at the table still playing though the puck was gone. The fight that erupted almost made perfect since framed like this.  The battle itself made none, one armed with a guitar and the other running underfoot.  A high score holder when down when the guitar bludgeoned him with that twang. I hurried the pair out as quickly as I could.  This wasn't the first time this had happened.

A story of dialysis, gencon and gary gygax's dice part 6

Out of Omaha we turned to Ottumwa and Twin Galaxies.  The village of Ottumwa a tiny place where once quarters reigned supreme.  This was the hometown of the arcade in it's powered down glory.  But for a day or two it flicked with life and the siren's song of attract mode was again heard. 

Lone collectors and garage game owners converging here to remake the arcades of old.  Everyone with a machine from four states over was came.  Trailers and trucks packed up with games crept the back roads that ran to Ottumwa.  All hoping to add their notes to the cacophony that was only conjured in the arcade.  Separate they were games with songs and sounds; together they sung discord.  Muffled and tame to closed doors; opened on the fullness of sound.  Then joy, a smile; a best friend too long forgot!  Ozone and too much electricity running in the air. 

A story of dialysis, gencon and gary gygax's dice part 5

Brian was a noted card cheat as well; offering junk Magic card trades.  He returned to Derek and I, with well over two hundred dollars of card value in profit.  His gains would become more liquid at the convention, but now the cards wouldn't fill the tank.  My credit card continued to run up with both gas and food.  The pair free to use my card at gas stations, but I was needed to sign for food.  Cashiers would gape at me, when they helped me to pay.  My skin was a little grey at this time and I was sunken; somehow walking a line of gaunt and morbidly obese all at once.

I was driving with a handicapped plate which helped a bit with parking.  I was being given Femocrite but still I was struggling with my breath across the mountains. Even in Indianapolis the elevation was a struggle, compared to home.  San Jose was sea level, it was easier to breath with the anemic blood you were left with after a run.  Walking was a chore for me, I needed a breather after walking around the grocery store those days.

A story of dialysis, gencon and gary gygax's dice part 4

The run went well, this time, limited weakness and I wasn't so worn out.  After my companions showed I drove a few hours before falling into the exhaustion of post dialysis.  Derek would drive when it wasn't me.  Neither of us trusted Brian's driving.  Guard rails and pylons often animated and attacked the cars he piloted.  Collapsed in the back I would wake to be the night driver.

Driving would be hard, we had two days to be in Omaha.  The drive to Reno was short, due to them having an open chair for me.  Only Salt Lake and Omaha had openings that fit me in.  I had been on the phone with probably fifty units setting up this trip. Getting units lined up and along with back up and emergency units warned that I would be traveling.  If you ever played that don't step on lava game, that is sort of like dialysis travel. You are safe in the unit but the second you get out the timer starts to get to the next.

Omaha wasn't bad though we hoped to visit Marlin Perkins who had apparently died over a decade past.  Brian found his way to the local gaming parlor during my run.  I returned to find he had turtled his imperial guard to a win in the evenings Warhammer tournament.

A story of dialysis, gencon and gary gygax's dice part 3

Reno was our first stop, not to gamble but there was need.  Americas biggest little city had a dialysis unit; which I needed.  Being Large my run would be five hours with little fishing for my vein. I hoped Brian and Derek wouldn't find any trouble.

Dialysis is a pretty much the same everywhere you go.  Weigh in, to see how much fluid they need to take off.  Wait for your chair to be vacated and lines replaced.  Sit and the tech feels for your vein.  They wipe you down with some brown goo that is a bit stronger than Alcohol.  Next you are injected with Lidocane for the pain, it burns too so what the fuck.  Finally they get the big needles in you. Those lines I mentioned before feed through something like a pool filter and back through a pump; which returns your blood to you.  Your circulatory system pumps a fair amount out, then the return motor gets switched on.  A lot of your blood is outside of your body at this point , so you get cold.  Aiding the blood flow they add a blood thinner called Porcine into the mix; you taste spam when they first shoot it into the line.  This isn't pleasant, I guess they have a cow option for Muslims called Bovine.  Then you fucking sit there. 

They usually have television the good units let you control the channel.  The bad units play from a central VCR.  I once sat through a Danny De La Paz film festival.  Most sleep, I never could with the constant blood pressure readings.  You were allowed visits but none long enough for a D&D game.  My wife would bring me doughnuts and wait for me early one.  It was hard on her, really it was too hard.  I eventually asked her not to come; I couldn't take what I was doing to her.  In reality she was still crying just at home instead of in the waiting room.

A story of dialysis, gencon and gary gygax's dice part 2

We headed east creeping our way through the land. Over the great mountains ever toward Indianapolis, which had long called us like a beacon.  This the dreamed journey of boyhood, with caution and savings thrown to the wind. Death and reading far too much of the German Idealists often renders experience in higher regard than money. Also I was being a selfish dick, what would my wife have after all this. But she encourage me, as a way of loving me, and I rationalized finally deciding to go.

I don't want to be mysterious so let me explain.  You are perhaps a normal person, dear reader.  Raised well and didn't fall outside of society or through the cracks.  But for some of us though, life throws a curve, and we ended up playing dungeons and dragons. In the darkness of a garage or basement we gathered, with foolish jokes and others like ourselves.  We are nerds! If you can imagine use all getting together for a few days, all in costume with our dice and books.  The horror that came to mind is called Gencon and is far realer than you would have hoped.  It was our destination, a Mecca for three broken souls.

A story of dialysis, gencon and gary gygax's dice part 1

In the depth of my illness I was shuttered with fear.  Kidneys failed and near daily dialysis had left me a shell of myself.  There was hope in a transplant though no operation is without risk and being large there was risk.  Because of this I was gripped in fright.  I needed a totem or talisman to remove fear and offer up some protection.  It was this need that started a voyage and quest.  Three travelers men of Edenvale sought a treasure that that could not be bought.

I, no hero, drowned is sickness on the trip to return home and live or die. This is the tale of the other two, good friends mourning me before I said goodbye.  Derek Long haired played guitar in a metal band and spent far too much time in the arcade along with me.  Brian the dungeon master seemed foolish but was cleaver and shrewd.  Here was our company that took the road. Through maps and months planning I finally had a route that accounted for alternating days of driving and hours at a dialysis unit each in a new town.  Some stretches would be close, we would drive with the hammer down others would require a short drive then long waiting.  The driving was no pleasure cruise, some of those had on ship dialysis which is very convenient.

A poem of past pain

Dear child in your sickness
you squall and don't understand
But where does it lead
when you finally become a man

Strike down the rage
it will go when we're bones
Answers don't come so
Rage against those enthroned

Give her heart a turn
And your safe, so you call it home
except wide eye mornings
where nothing fits in as shone

Drive to lands in black and white
Where the built decays glorious
And your past lifts up
Memories sung up in Chorus

Turn off the machines
them dead but giving life
All coming back cool
swollen; hurts like a knife

Failed filtration more time
we'll need next run
Shallowed breathing blood
This isn't any fun

Kidney failure, dialysis and transplantation

I have seen some sites talking about renal dialysis, kidney failure and kidney transplants.  I wanted to go a bit more into the specifics of my experience.  They really were just at the beginning of the in home dialysis machines so that was nothing i experienced.  They did do a bit of Dual Dialyzer testing at my unit and it seemed to have some positives when used serially but that actually added to run time.  I was not part of the test but one of the people I knew was.  It seemed to be best for big folks , my friend on the study was a big black guy, not really heavy but very tall and muscular.

My wife was really terrified when she started researching dialysis and it is not as bad as they say.  Most of the number you are going to see are because people doing dialysis are older often very old.  Many others are diabetic for some reason it kills off the kidneys.  I have the same disease Gary Coleman had and like him had kidney failure early in life.  If you are also having kidney failure early in life you probably have a good prognosis.  I went to two units one was Fresenius  Dialysis and I try to forget the other one.  I saw a lot of people die in my eight month on dialysis but many were people late in life that had kidney failure due to other long standing medical problems. Dialysis for me was like walking hand in hand with Death and when I said can you help me out he says no.

Fistula turned to expose incision

One of the questions i have seen coming up is what is a dialysis fistula?  Please be careful searching this as there are obstetric fistulas which are not a pretty picture.  What we are talking about in hemodialysis is the AV fistula.  I have the ideal which is the non catheter brescia fistula, catheters can get infected so are not the best.  When you get one you are sort of at the mercy of your vascular surgeon as some like to do them at the wrist and other at the upper arm.  I have the lowers wrist version.  I will show you a couple of pictures.

Fistula shaved to show full scaring for dialysis treatments

The line on the bulging area directly above my thumb is the incision site. That is where the doctor actually merged the artery and vein.  There are a couple of other types of dialysis accesses but I only really saw my wrist fistula the upper arm style and direct in chest catheters.  The chest ones are actually sort of nice as there is no pain and you are not constantly having open wounds.  I am including a picture of my now healed tracks but while actually on dialysis i had two to three pairs of healing needle wounds at any time.

transplant pill box

Now that i am post kidney transplant i am doing a lot better.  I will let you know i am hugely fat and added 20% extra weight after the transplant due to the steroid medication.  I also need to take a mood enhancer to combat the roid rage that was apart of that.  Here is a picture of my pill box, yes its a small tool box and that is a pad lock.  I like it as its easy to keep everything together and no one will steal my medication.  It's not the kind that will get you high but more the kind you will have a lowered immune system and die of pneumonia instead.

Wait for you

I recently had my 11th anniversary of my kidney transplant.  My wife was sort of talking about it, my mother thankfully did not.  I have a hard time dealing with it for some reason.  I just want to not think about it.

I feel in debt to my mom but I feel like I need to pay something off every year this time.  It freaks me out as I am not the sort of person who likes to owe someone.  I would rather settle my debts but this is something I am never going to be able to.

I also have this weird feeling of well that is a year less left on my transplant.  I know that is pretty morose way to look at things but I just get the creeping depression about it. 

Doing my best to just get past it now, I saw some posts with other transplants celebrating but that just seems crazy too me.  I think I may have the wrong attitude.  Side note I am happy to have hit 300 post for the blog

I should be singing but im tired out of breath

I'm a little sad how exhausted I am lately I am not getting much time in with my daughter or wife that I am not needing to fall over.  I am not sure what is going on, i could use several hours of sleep and still feel tired.

I am getting concerned about my transplant because of this.  I know I was always beat when my kidney finally failed.  You don't do a good job making red blood cells when you have renal failure so Oxygen is just not getting to your body.

I am going to go get my blood check soon, so I can stop worrying or start doing something about it. 

I hope this isn't the start of another bad period and is just a change of season flu or something getting me down.  I would love to just sleep.

Cellcept + Prograf = Get your flu shot

Sick again! It has been a bad year for me on the illness front. This is caused by the immune suppressant medication I take for my transplant. This is one of the side effect you have to live with after organ transplant. I have been lucky most of the time and have been much healthier than my seemingly regular immune system having wife. This year has been bad though, I seem to get every little stupid thing and they wear on for far longer than they have in the past. I am beginning to think it was my missing the flu shot, It normally feels like a waste of time. I seem to get the same winter season illness with or without the shot. But maybe it helps with the spring and summer bugs which are the ones I am getting this year. I also have cut down on my soda, as crazy as it sounds I think soda does kill off much of the mouth and stomach bugs I would have gotten. So the moral is if you have an organ transplant don't be stupid like me get your shots.

Sebaceous Hyperplasia

So there seems to be a new fault with my kidney transplant I must bear. Sebaceous Hyperplasia of the face which is often associated with the transplant drugs. I have got to say its utter shit. I got fat off these meds now I have to get uglier; I wasn't a male model to begin with.

It has something to do with the glands of the face sort of creating a deposit of tissue. It looks like a small zit or something .

I seem some information saying it is linked to Non melanoma skin cancer, but I really am having a hard time finding information in a simple format that I can understand.

Seems a storm of bull shit to me.

I've read all the books about being ill

I have a had a lot of medical problems throughout my life. From my kidney failure, skin problems all the way to several ear operations. Even to this day the ear nose and throat doctor makes me nervous. I would much rather to go the dentist, in fact my dentist is cool. I can easily remember being terrified as a kid visiting various doctors.

Now that I am a dad seeing my kid sick is incredibly hard. We had to give my daughter some eye drops which had her screaming and very afraid. Just doing it put me back in the doctors chair terrified of some thing he was going to use on my ears. And then I would think of my kid feeling that terror and I feel like I have failed. I don't want her to go through the crap I had even in a small way. Feeling her fear put me in tears the other night. I know it and I know how deep it is when you don't understand what is happening. And for my why it seemed to happen to me so often and not other people.

I don't mean that in a why me sort of way. I mean it in a kid coming to understand that their is something pretty seriously wrong with them sort of way. So far my daughter has been very brave little girl and has had few of the problems I had. I am happy, me being sick instead of hear makes what I have gone through OK.

One Pill Makes you Larger One Pill Makes you Small

I take a fist full of pills a couple times a day. These are related to my transplant. Just to be informative of what the medicines are like to someone thinking of transplant I am going to talk about them.

Prograf and Cellcept are my immune suppressants. I have a hard time separating the effects of one or the other since I always take them together. I take these so I don't have a rejection of the transplanted kidney. The side effects of these are many. I can have a burning sensation in the tips of my fingers, though this has not happened in a long time. I have shaking of my hands at times. There is also a problem with concentration and I'll be damned if I don't always type homonyms wrong every time.

Prednisone is a steroid that I take for immune Suppression. I fucking hate this med. I makes you eat like a pig and have roid rage. Seriously I have come close to hurting people. I was a serious problem.

That leads me to Celexa which is an uptake inhibitor type med. Basically this is a happy pill. I take it because of the hulking out incidents I mentioned above. This gives me a few seconds before I get into the rage. Basically I am given the choice If I go Viking berzerker.

I also take something to prevent gout. Gout is a very common when you are on the other medicines above. Imagine an evil monster attacking your foot and you get an idea. I only take this when I have to. I won't go into the side effects but it rhymes with serious rectal bleeding.

There are some other meds for blood pressure but I had those before and don't see them as part of the transplant. Oh a weird thing has to happen before going to the dentist, I take a huge dose of ammoxocillin before each visit. Its a precaution so I don't get sick, really no biggy.

Well if you have questions let me know.

Teenaged Spaceship

Well i had a coworker who's brother was on dialysis and scared of getting a transplant. I wanted to say something on that and be encouraging of transplantation.

I have had bouts of nephritis since i was eleven, and was having declining kidney function. But it was pneumonia around my birthday in 1998 that killed off my kidneys finally. I was sick but kept going which was bad for someone with my precondition.

The doctors had me do the fistula operation pretty quickly, but I had a wait letting the access mature. This was pretty bad. I had a night where I assumed I was going to die right before dialysis. It was my anniversary actually, I remember we were staying in Monterrey and I was trying to stay up a much as I could while my wife was asleep. I thought that was going to be it if I went to sleep. So i stayed up watching U-Turn, it was heart warming. I passed out sometime after that but woke up eventually. I think i sweated out the toxins that night, I was waking up in pools of sweat all the time then.

They got me on dialysis a couple of days later saying no matter the access I needed to be on dialysis. My first run was pretty good actually I felt way better after it. I was able to work while doing the runs it was almost passing for a life. Then i got changed to a new unit that was a slaughter house. Someone died every month I was on dialysis there, it was pretty crushing. My parents visited me once I think that made up my mom's mind that she wanted to donate.

I forget when we started the transplant process but it seemed to drag on so slow. That was until Oct 2009 then it was like OK we are doing it. They made me get an extra run the day before the transplant and I was in the hospital in three days. It was pretty crazy being on dialysis day to day with no real idea of when the operation is and then bam! your in the hospital.

The night before I was pretty scared there was a bunch of stuff with antibiotics and immune suppressants. Being deloused with some crazy shampoo. Then they took my mom in at some point in the morning, I thanked her and she was out. I remember seeing my wife's family and then they wheeled me to the operating table around 11am. The drugs hit then I don't remember any thing until the next day. I guess the operation was 12-14 hours and wasn't easy. My mom had an extra arterial separation they didn't expect. I don't remember the recovery room just being in my room.

The first day after the transplant was the worst day of my life. I was in so much pain it was crazy. They gave me drugs every four hours and it would drop me for an hour, I would be OK for another hour then i would be in bad pain for two more hours. that was my day. Fuck the pain was beyond belief. I was a wuss before this now I don't even notice when I mess myself up. Seriously I accidentally drilled my finger with a power drill and it didn't hurt much. This day was terrible.

Day two really wasn't great but wasn't terrible. Bad days on dialysis were worse. I was still in pain but it was OK enough and the medicine did its job. I was getting up for walks that they forced me to take. Day three was good, I could get out of bed no problem and was getting around. Day four they gave me a banana! Been awesome since then.

I had to wear sweats for a month, I'm a jeans guy, didn't like that. But Denise would get me breakfast in the morning. Even today its really special when she makes that for me. She helped me so much during my recovery, taking me to the hospital all the time. You have to have your blood tested every day for a while then every other day. Now its a couple of times a year. I have my fistful of meds i take every day but other than that i am just like everyone else.

And that is pretty good considering dialysis.

Do you like American Music?

Hey, I'm Jim, How are you doing? People want personal connection with their blogs these days so I guess I need to open up, which is not something I do very well. But here goes.

I am a guy in my mid to late thirties, I think you can tell music and video games are interests, at least if you have read this mess. I am a software QA engineer in my professional life and have worked all over silicon valley. I recently switched over from contracting to FTE and I am very happy about that. I like where I work much more than PayPal and the commute is way better than Obopay.

I have a daughter who takes up a lot of my time, she is 2 now. You can probably see a lot of posts before the last two years an not very many now, yeah that's her fault. I wasn't sure about having kids before she was born but I love her. If you don't like kids, maybe it will be comforting to her i don't really like them either but I love her.

I have had a kidney transplant and been on dialysis. My view point is very much altered after these events and I am pretty cynical about life. I was before too, just more now. I am happy to talk to people who failed, failing or transplanted kidneys. I am not into talking about it to healthies, you guys can screw off with your working organs.

I don't like to talk about politics, religion or the great pumpkin.

Well that's it for now, i think you can get an idea of who I am and where I am coming from from my writing, but I will try to update more like this.