going back to madison for the transplant

follow the yellow brick road
follow the yellow brick road
follow the yellow brick road
follow follow follow follow the yellow brick road
i'm off to see the wizard to get some better lungs

quick response to let u know the status of my
double lung transplant which will be done at the
university of wisconsin medical center and the
va hospital in madison wisconsin

i am leaving socal to fly back to madison, wisconsin
on monday november 2, 2009 have an angiogram on the
upper right quad of my heart and have been told they
want me to stay there which means it will just be
a wait and see and wait for the phone call that wants
me to get my hinney down to the prep room and get
ready caus the have a super duper fantabulous awesome
set of lungs

i do have the belief that i have 3 of the cutest
guardian angels out there who will assist the transplant
team to bring back the lungs safely to madison at the
u of w medical center to be transplanted into this
what one will call a body or vessel or whatever

and that God has His hand on my shoulder and His hand
on the surgeons hand who is doing the transplant so
i am just putting it into the box for God to handle
because it is not in my control at this point what so
ever

do not know when this will take place as for me
to get the lungs they have to come from someone
who has died and they have to be a match as well
as a lot of other things to be tested

the university of wisconsin has the best success
rate in the nation at over 88% after the first year
and they invented the w proceedure for lung tranplants
and have been doing them since the early 80's

also the va hospital in madison is the number one
va hospital in the va system and as i prviously
stated the university of wisconsin is the number
one hospital which does transplants

so i have gotten all things taken care of financially
just to make it easier in case i happen to die and that
is a fact because the lungs are the most fragile organ
in the body and have to be transplanted within 6 hours
or they will not be any good and rejecting is very
likely to happen

i will say the bolt before i pass through the portal into
the operating room and will also do the rock chalk chant
because i went to school at kansas

the operation will take between 8-12 hours for the
transplanting of the harvested lungs so i will have
time to do an out of body experience which would be
a trip in itself

also want u to know i have been getting ready just
for this one event my whole life

i told my mother that i am the only one in the
family who takes chances and goes out on a limb
well this is gonna be bigger than an e-ticket ride
at disneyland or a launch into outer space or even
being catapulted off of an air craft carrier

this is all that my caretaker knows and she will
inform everyone when more information is known
and u will only get this when i am actually having
the transplant done and not a dry run as they say
when i am called into the room but the lungs
which they are harvesting do not meet up to
their specifications for transplanting

also the lungs have to be super duper fantabulous
awesome lungs which they will be transplanting
into me

if u want to leave any messages leave them here
but i will not be checking them for a while cause
i have a few things to do like get out of icu and
learn how to breath again

sign up its free to leave a message on my guestbook

http://www.inspire.com/snappykappy/guestbook/

so this is what the email will say when i am
getting sliced and diced upon

and in the subject line it will say: its showtime

its showtime
just getter done
hooskerdo and watermelon jello

i have sarcoidosis it does not have me
i will kick its ass
i refuse to lose
thomas michael kappler

now a story just to give u a laff for the day and
to lighten up things


* By lonewolfdlw
* Posted April 16, 2009 at 10:44 am


Ok, first a disclaimer, I don't know who wrote this, it was NOT me, someone
sent it to me a long time ago and I liked it so much I kept it. Every time I
get to really feeling down, I'll find it and pull it out and read it and it
at least makes me smile and laugh for a bit, so I thought I'd share it with
you, my new friends, who like me could usually use a good laugh and smile.
This story paints a great mental picture of what this guy's going through,
it's a little long, but worth it....hope you enjoy it as much as I do!
thomas
******************
I never dreamed slowly cruising on my motorcycle through a residential
neighborhood could be so incredibly dangerous! Little did I suspect ...
I was on Brice Street - a very nice neighborhood with perfect lawns and
slow traffic. As I passed an oncoming car, a brown furry missile shot out
from under it and tumbled to a stop immediately in front of me. It was a
squirrel, and must have been trying to run across the road when it encountered
the car. I really was not going very fast, but there was no time to brake
or avoid it - it was that close. I hate to run over animals, and I really
hate it on a motorcycle, but a squirrel should pose no danger to me. I barely
had time to brace for the impact. Animal lovers, never fear. Squirrels, I
discovered, can take care of themselves! Inches before impact, the squirrel
flipped to his feet. He was standing on his hind legs and facing my oncoming
Valkyrie with steadfast resolve in his little beady eyes. His mouth opened,
and at the last possible second, he screamed and leapt! I am pretty sure the
scream was squirrel for, “Bonzai!” or maybe, “Die you gravy-sucking, heathen
scum!” The leap was nothing short of spectacular ... as he shot straight up,
flew over my windshield, and impacted me squarely in the chest.

Instantly, he set upon me. If I did not know better, I would have sworn he
brought 20 of his little buddies along for the attack. Snarling, hissing,
and tearing at my clothes, he was a frenzy of activity. As I was dressed only
in a light t-shirt, summer riding gloves, and jeans this was a bit of a cause
for concern. This furry little tornado was doing some damage!

Picture a large man on a huge black and chrome cruiser, dressed in jeans, a
t-shirt, and leather gloves, puttering at maybe 25 mph down a quiet residential
street, and in the fight of his life with a squirrel. And losing... I grabbed
for him with my left hand. After a few misses, I finally managed to snag his
tail. With all my strength, I flung the evil rodent off to the left of the
bike, almost running into the right curb as I recoiled from the throw. That
should have done it. The matter should have ended right there.

It really should have. The squirrel could have sailed into one of the pristinely
kept yards and gone on about his business, and I could have headed home. No one
would have been the wiser. But this was no ordinary squirrel. This was not even
an ordinary ticked-off squirrel. This was an EVIL MUTANT ATTACK SQUIRREL OF
DEATH ! Somehow he caught my gloved finger with one of his little hands and,
with the force of the throw, swung around and with a resounding thump and an
amazing impact, he landed squarely on my back and resumed his rather anti-social
and extremely distracting activities. He also managed to take my left glove
with him! The situation was not improved. Not improved at all. His attacks were
continuing, and now I could not reach him. I was startled to say the least.

The combination of the force of the throw, only having one hand (the throttle
hand) on the handlebars, and my jerking back unfortunately put a healthy twist
through my right hand and into the throttle. A healthy twist on the throttle of
a Valkyrie can only have one result. Torque. This is what the Valkyrie is made
for, and she is very, very good at it. The engine roared and the front wheel
left the pavement. The squirrel screamed in anger. The Valkyrie screamed in
ecstasy. I screamed in ... well ... I just plain screamed.

Now picture a large man on a huge black and chrome cruiser, dressed in jeans,
a slightly squirrel torn-t-shirt, wearing only one leather glove, and roaring
at maybe 50 mph and rapidly accelerating down a quiet residential street on one
wheel and with a demonic squirrel on his back. The man and the squirrel are both
screaming bloody murder. With the sudden acceleration I was forced to put my
other hand back on the handlebars and try to get control of the bike. This was
leaving the mutant squirrel to his own devices, but I really did not want to
crash into somebody’s tree, house, or parked car. Also, I had not yet figured
out how to release the throttle.... my brain was just simply overloaded.

I did manage to mash the back brake, but it had little effect against the
massive power of the big cruiser. About this time the squirrel decided that
I was not paying sufficient attention to this very serious battle (maybe he
is an evil mutant NAZI attack squirrel of death), and he came around my neck
and got INSIDE my full-face helmet with me. As the faceplate closed partway,
he began hissing in my face. I am quite sure my screaming changed intensity.
It had little effect on the squirrel, however.

The RPMs on The Dragon maxed out (since I was not bothering with shifting at
the moment) so her front end started to drop. Now picture a large man on a
huge black and chrome cruiser, dressed in jeans, a very raggedly-torn t-shirt,
wearing only one leather glove, roaring at probably 80 mph, still on one wheel,
with a large puffy squirrel’s tail sticking out of the mostly closed full-face
helmet.

By now the screams are probably getting a little hoarse. Finally I got the upper
hand ... I managed to grab his tail again, pulled him out of my helmet, and slung
him to the left as hard as I could. This time it worked ... sort-of. Spectacularly
sort-of ... so to speak. Picture a new scene.

You are a cop. You and your partner have pulled off on a quiet residential street
and parked with your windows down to do some paperwork. Suddenly a large man on a
huge black and chrome cruiser, dressed in jeans, a torn t-shirt flapping in the
breeze, and wearing only one leather glove, moving at probably 80 mph on one wheel,
and screaming bloody murder roars by and with all his strength throws a live
squirrel grenade directly into your police car.

I heard screams. They weren’t mine... I managed to get the big motorcycle under
control and dropped the front wheel to the ground. I then used maximum braking
and skidded to a stop in a cloud of tire smoke at the stop sign of a busy cross
street. I would have returned to fess up (and to get my glove back). I really
would have. Really. Except for two things. First, the cops did not seem interested
or the slightest bit concerned about me at the moment. When I looked back, the
doors on both sides of the patrol car were flung wide open. The cop from the
passenger side was on his back, doing a crab walk into somebody’s front yard,
quickly moving away from the car. The cop who had been in the driver’s seat was
standing in the street and was aiming a riot shotgun at his own police car.

So the cops were not interested in me. They often insist to “let the professionals
handle it” anyway. That was one thing. The other? Well, I could clearly see
shredded and flying pieces of foam and upholstery from the back seat. But I could
also swear I saw the squirrel in the back window, shaking his little fist at me, ...
That is one dangerous squirrel. And now he has a patrol car. A somewhat shredded
patrol car .. but it was all his.

I took a deep breath, turned on my turn-signal, made a gentle right turn off of
Brice Street, and sedately left the neighborhood. I decided it was best to just
buy myself a new pair of gloves. And some bandages.


and here is something as they say food for thought
again written by another person and not me


The Daffodil Principle

Several times my daughter had telephoned to say, "Mother, you must come to
see the daffodils before they are over." I wanted to go, but it was a two
hour drive from Laguna to Lake Arrowhead "I'll come next Tuesday", I promised
on her third call.

The next Tuesday dawned cold and rainy. Still, I had promised, so reluctantly
I drove there. When I walked into Carolyn's house I was welcomed by the joyful
sounds of happy children. I delightedly hugged and greeted my grandchildren.

"Forget the daffodils, Carolyn. The road is invisible in these clouds and fog,
and there is nothing in the world except You and these children that I want
to see badly enough to drive another inch!"

My daughter smiled calmly and said, "We drive in this all the time, Mother."
"Well, you won't get me on the road until it clears, then I'll be heading home!"
I assured her.

"But first we are going to see the daffodils, I'll drive, I'm used to this."
Carolyn said. "Mother You will never forgive yourself if you miss this
experience." Reluctantly I agreed to go.

After about twenty minutes, we turned onto a small gravel road and I saw a
small church. On the far side of the church, I saw a hand lettered sign with
an arrow that read, "Daffodil Garden." We got out of the car, each took a
childs hand and I followed Carolyn down the path. Then as we turned a corner,
I looked up and gasped. Before me lay the most glorious sight.

It looked as though someone had taken a great vat of gold and poured in over
the mountain peak and its surrounding slopes. The flowers were planted in
majestic swirling patterns, great ribbons and swaths of deep orange, lemon
yellow, saffron and butter yellow. Each different-colored variety was planted
in large groups so that it swirled and flowed like its own river with its
own unique hue. There were five acres of flowers.

"Who did this?" I asked Carolyn. "Just one woman," she said. "She lives
on the property in that little A frame house." Carolyn pointed to the nicely
kept home sitting amidst all of that glory. We walked up to the house.

On the patio we saw a poster. "Answers to the questions I know you are asking",
was the headline. The first answer was a simple one. "50,000 bulbs," it read.
The second answer was, "One at a time, by one woman. Two hands, two feet and
one brain." The third answer was, "Began in 1958."

For me, that moment was a life changing experience. I thought of this woman
whom i had never met, who, more than forty years before, had begun, one bulb
at a time, to bring her vision of beauty and joy to an obscure mountaintop.
Planting one bulb at a time, year after year, this unknown woman had forever
changed the world in which she lived. One day at a time, she had created
something of extraordinary magnificence, beauty, and inspiration.


That is, learning to move toward our goals and desires one step at a time--often
just one baby-step at a time-- and learning to love the doing, learning to use
the accumulation of time. When we multiply tiny pieces of time with small
increments of daily effort, we to can accomplish magnificent things. We can
change the world......

"It makes me sad in a way," I admitted. "What might i have accomplished if
i had thought of a wonderful goal thirty five or forty years ago and worked
at it 'one bulb at a time' through all those years? Just think what i might
have been able to achieve."

My daughter summed up the lesson of the day in her usual direct way. "Start
tomorrow" she said.

She was right, it is so pointless to think about the lost hours of yesterdays.
The way to make learning a lesson of celebration instead of a cause for regret,
is to ask, "How can I put this to use today?"

Use the Daffodil Principle. Stop waiting.....

Until your car or home is paid off
Until you get a new car or home
Until your kids leave the house
Until you go back to school
Until you finish school
Until you clean the house
Until you organize the garage
Until you clean off your desk
Until you lose 10 lbs
Until you gain 10 lbs
Until you get married
Until you get divorced
Until you have kids
Until the kids go to school
Until you retire
Until summer
Until Spring, until fall
Until winter
Until you die

There is no time better than right now to be happy.

Happiness is a journey, not a destination.
So work like you don't need money.
Love like you've never been hurt, and dance like noone is watching.


and one last one as someone sent this to me which is think fairly
well explains what sarcoidosis does and how i react to it

There are the things I would like you to understand before you
judge me...

Please know that being sick doesn't mean I'm not human. I may
spend most of my day flat on my back and I might not seem like
great company, but I'm still me stuck inside this body. I worry
about school, work, family and friends and I'd still like to hear
about yours.

Please understand the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable but it will
pass. I've been sick for for so long that I can't afford to be
miserable all the time, in fact I work hard at not being miserable.
So if I sound happy, it means that I'm happy, it does not mean
that I am well. I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!".

I am not sounding better, I am sounding happy. If you want to
comment on that, you're welcome.

Please understand that being able to stand up for five minutes,
doesn't mean that I can stand ten minutes, or an hour. It's likely
that five minutes has exhausted my resources and I'll need to
recover - imagine an athlete after a race. They couldn't repeat
that feat right away either. With a lot of diseases you're either
paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, "sitting up",
"walking", "thinking", "being sociable" and so on ... it applies
to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite
possible (for me, it's common) that one day I am able to walk to
the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you. In
a similar vein, I may need to cancel an invitation at the last minute,
if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make
me feel better, and can often make me worse. Fibromyalgia may cause
secondary depression (wouldn't you get depressed if you were no longer
able to participate in life?) but it is not caused by depression.
Telling me that I need exercise is not appreciated or correct - if
I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these
pills now, that I do have to do it right now - it can't be put off or
forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get
well. With a short-term illness like the flu, you can afford to put
life on hold for a week or two while you get well. But part of having
a chronic illness is coming to the realization that you have to spend
some energy on having a life now. This doesn't mean I'm not trying to
get better. It doesn't mean I've given up. It's just how life is when
you're dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not because I don't
appreciate the thought, and it's not because I don't want to get well.
It's because every one of my friends has already suggested every theory
known to man. I tried them all, but quickly realized I was using up so
much energy trying new treatments I was making myself sicker, not better.
If there was something that cured Fibromyalgia, all of us would know
about it by now.

If you read this and still want to suggest a cure, submit it in writing
but don't expect me to rush out and try it. If it is something new, with
merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia
entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most
importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all
content is kept intact. No other person shall ever publish this work citing
themselves as the author.


i have sarcoidosis it does not have me
i will kick its ass
i refuse to lose
thomas michael kappler