My name is Martin
but everyone calls me Marty. Im 51, married to a lovely
redhead, have 5 surviving children and Im HCV positive.
I now live in Utah again after moving back from California
my story I am not a writer and dont know if I can tell
this to you so that you may want to listen. But I will give
it my best shot.
In 1996 after having
a heart attack (smoking and a horrible diet led to that) I
was told that I tested positive for Hepatitis. I said I was
aware of that as I had hep was I was 12 years old. Nothing
more was said at that point and I concentrated on recovering
from the heart attack. Changing my diet getting more exercise,
reducing my stress and quitting smoking. I am proud to say
I accomplished all 4. Reducing the stress was the
hardest as my occupation was just that.
Well I thought
I had the bull by the ......... horns at that point. Life
was looking rosy and was feeling great. Kids were being kids
but nothing too far out there or that I hadnt done myself
as I was growing up. Just a bowl of cherries that someone
topped with whipped cream. Now here I have to make a note
that this was my perception not my wifes! She had her
own views on how life was back then and it is anything but
Well that went
on for a few of months then I started being tired all the
time. I dont mean sleepy but worn out. It was hard to
get up and go to the job I loved. I mean I really loved what
I did and looked forward to go to work everyday. Its
not often you get to do something you love and make a living
at it. I was one of the lucky ones in this world. Now as I
got sicker and sicker with HCV this job I loved became a burden.
I did not even realize this was happening. I started being
discontentive in my job, became argumentative over nothing
and intolerant of others.. All of this
because I was really sick and didnt have a clue.
Well now Im
taking time off work. Home sick. Think I have the flu or some
other bug. I ride it for a few days and start feeling better
and return to work. Feel good for a few days and then WHAM!
Im sick again.. I dont know if its some thing
I have eaten but man am I not feeling well. I finish my shift
go home and go right to bed. It was what we called my long
weekend. So it was Tuesday morning and I didnt have
to be back to work til the following Monday. I spent the whole
time in bed or close to it. Well I returned back to work and
all seemed fine except I had no
energy and felt like I was just going through the motions.
Was still intolerant of everyone, co-workers, the public,
family, the dog, the cats.
Life was really
starting to suck. About this time I Noticed that I could not
eat like I usualy did. A few bites and I was full. I dont
mean a little full, I
mean stuffed type of full that you get on Thanksgiving after
that big meal. Also I was finding that my clothes no longer
fit as good as they use too. My pants were getting tight in
the waste, my shirts were to short to tuck into my pants.
I just couldnt figure it out. Wasnt eating and
here I am
getting bigger and bigger. Well this continued for about a
year me getting sicker and sicker, getting bigger and bigger,
eating less and less and I still I didnt have a clue.
Well drug testing became a way of life for me at work so I
got to see my urine every few weeks. It kept getting
darker and darker and became harder and harder to fill the
little bottle. They would say here drink these and hand me
a liter bottle of water. I would drink it and 45 minutes to
an hour later barely be able to produce a minimum sample of
20 ml. But I felt like I was going to explode
because I was so full.
At this point I
went in to see my regular doctor. Told him what was going
on and that I was sick again. Tired, worn out, sleeping 14
hours a day and never feeling rested. Being the good man that
he was and a caring doc he started running all the usual test.
I mean I was poked, prodded,
stabbed, peed in bottles, scraped BM on pieces of cardboard
and some things to disgusting to even mention. During all
of this everything came back normal or within normal limits.
That is everything except my liver functions. So he ordered
even more test and found out I had HCV.
Being a GP he had no experience in Hepatitis so he referred
to my first specialist. I will be kind and not mention her
name here (I dont want her suing me). Well I wait the
6 weeks to get into see her and she says you have Hepatitis
C. Great I say so what now? Well Marty we can get you into
an experimental treatment program that will probably make
real sick. It may help and it may not. I tell her that I had
Hepatitis A when I was 12 and that its all better now. I am
thinking that this will also go away if I follow the same
routine as before. But I ask How sick are we talking?
She goes on to describe how I will have flu like symptoms
. Chills vomiting, mood swings that boarder of being insane.
Possibly day or two in bed then a good day then back to the
same ole thing of being sick again. I asked how people work
with this treatment and she said most didnt.
Well at this point Im not feeling sick at all. In fact
I hadnt felt this good
in months. So I opted not to do the Interferon treatment.
I also have to make a point here of saying I had no idea what
HCV was, how it was going to effect the rest of my life, or
that I may die with it. This highly regarded professional
never once said there was no cure. It was
progressive. Or that I would die with and/or from it, not
once!! So being well I opted for no treatment thinking this
too would pass. I asked How did I get this? She stated (keep
in mind the medical community no longer insists this is true)
I probably got it from IV drug use. When I told
that was impossible I had never been an IV drug user. She
asked if I ever snorted cocaine, had unprotected sex, sex
with ladies of the night, ect. Everything she asked was based
on anti-social behavior. I have to admit if you do not know
me (even a few who do) may think this. Long hair (well it
use to long and nice now Im just glad to still have
some) , a full beard, motorcycle riding leather wearin, well
you get the picture. A true liberal in most every sense of
the word. But an IV drug user, this was not me. Yes I was
raised in the 60s and yeppers I did smoke my share of ole
Mary Jane, popped a few pills, and drank my share of wine.
Hell I even drank JD man is that stuff nasty but to each his
own. As far as sticking myself with needles thats not
going to happen, I cant even watch when the lab draws
blood to this day. That was a three times a week thing for
about nine months and Im still not use to it!!!
Well this doc said ok but I could tell by her tone of voice
and her demeanor that she was just humoring me. Kind of like
you might do to the kid who always asks why. But it was obvious
to me I did not get this in what the medical community thought
was the most usual and common method of transmission. So now
Im at a lost of how I got it, not a clue as to how sick
Im going to get, not realizing that my memory is not
what it use to be, and thinking I will get better. After all
doesnt everything have a cure unless the doctors tell
you other wise. Well this was my first encounter with the
liver specialist at Kaiser in Calif. And as I said I was feeling
great and loving life. So hi ho hi ho its off to work I go.
Well lets fast
forward a little. My liver functions have worsened, no viral
load has been done, Im in the hospital with a collapsed
right lung. Got your attention. Good cause some of you will
go through this. I pray none of you will but I know I wont
be the only one. At this point no one is
saying why my lung has collapsed it just has. They are aware
that I have ascities and I have been taking small amount of
diuretics at this point. I say small because I am on only
one and it is once a day and a small dose. The second day
in the hospital they say they are going to drain the fluids
from my chest.
I have to say I
am not a very good patient at this point. Im angry,
combative from not being told anything other than You
will have to ask your doctor. Now they send in an intern
(right out of school and has no experience with this procedure)
at least they told me that. I said no way you go and get a
doctor to do this. So they do, hes pissed cause he was
going to go and play golf (I really dont know if that
part is true, only that he didnt want to do the procedure
and he said so!!). So he complains to me about having to do
and sees no reason why this intern
cant. After all he says she has to learn sometime. My
response was has she done this on a practice dummy or am I
the practice dummy? Guess He really didnt like that
cause at that point he said he would just do it himself. He
then stabbed me with a needle to numb the area where he
would be going in to draw the fluid off. I have to say he
had hands like a mechanic not a doctor. I think I may have
caused this from my reluctance to be a practice dummy for
Well he starts drawing fluid, I know that the *liver specalist*
had told then to draw all the fluid off. That the intern was
instructed to do just that. But This doc only drew enough
to allow for half my lung to inflate. He said they would increase
the diuretics to clear the rest. He also said oops!! as he
was moving the needle around inside my chest. He punctured
the right lung, as he put it just a little nick. The next
thing I know the X-ray tech is in the room taking pictures
of my chest and saying oh shit. It turned out
the little nick was a bit more serious as the fluids in my
chest cavity were now leaking into my lung. Once again my
God was watching over me. The lung sealed itself off and I
heaved up the bile that was in it. Damn did that feel good!
Taste was even better. Lets see if I can describe this for
you. It has this bitter, foul taste something along the line
of rancid meat mixed with the taste of how strong urine smells.
You now the kind dark amber almost brown stuff us heppers
piss all the time.
Well that extended my stay a few days, they wanted to make
sure it stayed sealed. To this day I think that Doctor did
it on purpose because I refused to let the student perform
the *procedure*. Well they upped my diuretics to three times
a day, added a second one to be taken twice a day and sent
A little note for
all of you, they still at this point had never told me how
serious HCV was. But I was no longer ignorant either of what
I had. Maybe some of you remember way back when this group
first started on the womens network and I truly cannot
remember what it was called. I do remember it becoming WebMD
though. Well that is where I met Lyric, Sam, and a host of
others. some of whom are no longer with us. (paused because
of the tears and the sorrow I still feel for the friends that
I have lost). It is also where I got my 1st support from other
I soon learned all about HCV, how long it had been around,
where it had come from, how it was spread. I also learned
it was a terminal illness and that I would die with it. So
I confronted the *specialist* with what I had learned and
she seemed quite surprised. She also tried her best to
convince me that it was not all as dark and gloomy as it seemed.
Her and my wife did not see eye to eye on anything! I guess
that is what happens when you place to strong willed women
in the same room. Though that never happened again as this
doctor forbid Karen from being in the exam room with me when
she ( the doc) was there. Karen was made to wait in the waiting
room. Even when she did the biopsy Karen was not allowed in
the recovery area until this doc was off
the floor. They really didnt like each other and I was
glad they stayed separated cause the tension was so thick
you could cut it with a saw (a knife wouldnt have even
Well I guess you
figured by now that I am getting pretty sick. You would have
guess right. I am still working and putting in the grueling
hours required of emergency service personnel. Still loving
my job but am getting more and more exhausted with each passing
day. The doc finally agreed to check and see if there was
any possibly that I may have gotten this from a blood transfusion.
Like I stated before I ride, if you ride you go down, if you
ride enough you will go down hard at least once. Theres
an old saying in the biker community it goes like this; There
are two kinds of bikers. Those that have gone down and those
who are waiting to go down. I fall into both categories
as I like to ride hard and I worry not about scratching my
bike. With that I should note that until last year when I
got ran into by a deer I had not been down since May of 1976.
Yes both the deer and I are just fine. Well anyway she was
able to track down the transfusion in 76 as the source of
This opened a whole new can of worms for me!! Even though
this Hospital (in SLC, UT) saved my life, they gave me an
illness that would
eventually take it away. To say I was angry is an under statement
I was F**KEN PISSED. At life. at myself for being so reckless,
at the doctor who was not treating me, and mostly at the hospital
for giving this to me. Now I was no angel in my younger years.
And I have few if any regrets. I
lived life my way and I loved every minute of it good times
or bad it just made me better. But even at that I felt I did
not deserve this from the very place that was supposed to
take care of you. Well I had all the emotions, anger, self
pity (though that one didnt last long) fear, of not
what would happen next, of what would my wife and kids do,
of not being there when they needed me, missing my daughters
getting married, not being able to dangle their boyfriend
from a bridge during a fishing trip while asking what their
intentions towards my daughter was, not being there to watch
my youngest graduate, the list goes on and on. I have been
scared before and have tasted fear on several occasions. Nothing
can compare to this fear, it was something I could see in
my mind, not with my eyes, I could feel it in my heart, but
not with my hands. It is real and yet surreal all at the same
time. I hated the hospital that gave this to me. I wanted
revenge! I wanted to make them change their name (from the
law suit I was planning) to mine. So I could make sure that
this could and would never happen to another soul!
Well that lasted
about a week and I came to my senses. It wasnt their
fault any more than it was mine. Shit happens and it happens
to me as often as not. At this point I took the offensive.
I started researching everything I could. I found where, when,
how, and why HCV moved to the USA. I learned that some (if
not most) of our vets that died from cirrhosis didnt
drink themselves to death like I had been told for years.
Instead they died with HCV that destroyed their livers. To
this day I know that I am better educated on HCV than most
doctors. It pains me greatly when I see another with HCV (or
any liver disease) starting to deteriorate. It is slow, continuous,
and cruel. Because it will allow you times of feeling great
and thinking you may be in remission, when in fact it is taking
a nasty ugly bite from your liver and your life.
So I go back to
this *specialist* I guess I should make a note here. I had
no other options at the time. My insurance was with this HMO
and she was the only game in town for me. So rather than piss
her off and get treated like the doc that rupture my lung,
I decided to make an ally of her. This was a lot easier then
I thought, she was impressed with what I had learned, though
she never did apologize for not telling me upfront how sick
I was. What she did do was put a class together for the rest
of her soon to be patients. This class explained what HCV
was, the different ways of contracting it, the possible treatments,
ect. Though it was informative it was far from being accurate.
I laugh at the debate (use this term lightly now) we had over
this. The number one cause of HCV according to the medical
community was IV drug use, the second most common method was
unprotected sex, followed by transfusion and accidental exposure
by various means. This doc and I both knew
this was not true and the debate was on.
What I didnt
know at that time was that the CDC was now investigating our
nations blood supply. A test for HCV had been perfected and
was being used at all blood banks for a few years and what
they were finding out was just plain scary. It is now their
(the medical community) opinion that the most common way getting
HCV (in the past not the present) was no longer IV drug use
but from receiving donor blood transfusions.
Ahhh but I get ahead of myself here. We left the meeting (class)
not feeling any better than when we walked in. Only my doc
had a new respect for me and she was aware that I was not
going to be taking this in the prone position. She had her
nurse call and set up a couple of appointments and the test
were on. I was in for the poking and prodding of my life now.
They checked everything, my prostates, my bowels, my stomach,
and finally my liver (thats was my first and only liver biopsy).
I was scanned. x-rayed, imaged, and scanned some more. They
decided that I would need a new liver and I was referred to
the UC at San Francisco/Stanford for the transplant.
Oh yeah I should say I have never found out exactly what the
results of the liver biopsy was, even though I asked. Here
is what I was told, It looks pretty good, no cirrhosis,
no anything at this time you are lucky. I was referred
the following week for transplant, now that should sound the
alarm in ya, it did in me but I was never able to access that
Well now that the
referral was made, the first appointment was made (2 months
from now if my memory serves me) and my real nightmare began.
Well the wife and
I make the two and a half hour drive to UCSF. I was more than
a little nervous, the drive was hard on me, I had no energy
and even less patient for the demi-gods I was about to meet.
We get there about fifteen minutes early thinking it was going
to show them something. Man nothing was further from the truth.
They could have cared less.
We got there registered and waited for nearly 2 hours before
anyone even knew we were there. I was to the point of leaving,
when the wife went up and asked what the hell was going on.
It seemed someone had dropped the ball (this was going to
be a reoccurring theme from now on I was soon to learn) the
receptionist made a quick call and we were seen with in 5
minutes. Dont get your hopes up, it was a case worker.
Or as I still affectionately refer to her the snotting caseworker
from hell. She was right out of school and so full of herself
she failed to see the human being she was there to help. All
she knew was what the hospital rules were, and oh yeah you
do have insurance dont you? Well before we get started
you will need to go downstairs and pee in this bottle for
us. Now to be honest she did not put it that way. She said
there were some tests that needed to be run, and that it would
be done in the lab on the first floor. The *tests* were fill
this to the line please and there were no others at that time.
So I did like they had requested, that was easy, Then back
up stairs to wait some more. Not as long this time though.
Well she takes us into a small office and asks me how long
it had been since I shot up. I nearly feel off my chair! I
said what the hell are you talking about? I saw that she had
my file with her it was about three inches thick at this point.
Like I said Kaiser had poked, prodded, imaged, drained pints
of blood from
me, sacks of poop, and gallons of urine ........ it was all
there in black and white. Didnt this fine social worker
take the time to even look at my file?
Well she said she read the whole thing and repeated herself,
Mr.Cohen, when was the last time you used IV drugs?
I know a lot of you dont know me but that set me off.
Not bad but enough. I made it perfectly clear to her that
I did not use IV drugs nor had I ever. Well we moved on her
attitude just getting worse by the minute. Mine was mirroring
hers so neither of us was enjoying this much. She told me
the rules of being accepted as a transplant candidate. How
if they said they would list me what I would have to do to
be listed, to remain on the list, and to be transplanted.
She then handed
me booklets, papers, asked me to sign things to this day I
have no idea what they were (most went unsigned as she
didnt know what they were either and she didnt
have the time to allow me to read them), explained to me that
there would be more testing and if I was healthy enough to
be listed and I met all the criteria I then would be placed
on the list. She also told me that there was at least a 2
year wait once I was listed. This was like a kick in the stomach
to me. At this point I had been told I had less than 2 years
left. She then went on to tell me how successful the transplant
team was at this hospital (more on their success rate later)
over 95%. She also went on to say the
average hospital stay was 3 + months. Having been through
several major surgeries over the years I was amazed. I mean
I almost died twice from motorcycle accidents, one losing
my spleen, puncturing my stomach, large and small intestines,
compound fracture of the femur,
crushed ankle, all of which required surgery to repair. I
was out in 28 days and back on my scoot in 2 weeks (it took
that long for them to repair it). She then explained all the
things that could go
wrong, what usually goes wrong ect. ect ect. Painted quite
a bleak picture she did at this point I didnt know if
I wanted them to work on me or not!
Well about that
time the first demi-god showed up. You all need to know I
got there at 7:30 AM it is now 3 in the afternoon and I am
out, dosing off in the chair and starving cause we havent
eaten. Needless to say my mood is a bit foul. This doctor
is about to see it first hand. He comes in looks at my leather
jacket (I now no longer wear it to doctor appointments if
I do not know the doctor, nor do I wear it to get a prescription
filled) and asks Mr. Cohen? I say yes nice to
meet you and he introduces himself. I dont remember
his name as that was the only time I ever met him, or anyone
else involved with the transplant center at UCSF. He then
asks if I ride a motorcycle I say yes I do. He then goes on
to tell me he use to ride but gave it up when he became a
doctor. His excuse was that you would die in an accident or
be crippled or worse. He went on to describe how *most* serious
accidents survivors were strapped to a wheel chair drooling
all over themselves. I started laughing (politely) and said
I had been riding for more than 30 years and I was just fine.
He said youve never had a serious accident then.
At this point I
knew I was in for the time of my life. I got a real narrow
minded individual here. I explained that I got the HCV from
an accident in 76. He said that they would determine were
and when I got HCV. So the line in the sand had been drawn
and I was on the wrong side. An interesting side note here.
At the same time I was doing my intake a certain celebrity
was doing his, he also rode motorcycles, he was transplanted
that year and I wasnt even listed. Well this doc was
us for around 20 minutes, told me he was god and what he said
was the way it was. If I could not live with that to look
for another transplant center. Like I could. I mean my insurance
was an HMO and this was there only contract, UCSF.
I kinda knew I
was screwed right then. I asked what the test were they needed
to run. He told me that I would be contacted and the times
places would be scheduled. I said OK. He then sent me and
the wife across the street to the finance department. Now
ya want to talk scary ....... go meet a bean counter. This
man was what you see in cartoons or stereotyped in movies
(or maybe it was the waning of the day and my hepper head).
He was short about 55 or 56, couldnt
have weighed 120 pounds soaking wet, way thinning hair, horned
rimed glasses, pocket protector full of pencils and pens and
a ream of papers under his arms.
With that said
I want everyone to know this was the nicest person I had met
who worked for UCSF. I mean this man was great. He explained
how much everything was going to cost, how it was going to
be paid for. Said he could arrange for transportation for
me and the family and find a place for the wife and kids to
stay while I was in the hospital. All of this
at no cost to me or my family. What a guy!! I thought this
was too good to be true and said so. He assured me that it
was true that they had a contract with my HMO and all this
was spelled out and that they would be picking up the tab.
He even stated how much they would be paying. The figure that
comes to mind today is $230,000 for the whole thing. Like
it stopped my heart. Well we were there a little over 30 minutes
while he explained everything to us. We both let feeling a
lot better about things. Knowing that everything would be
paid for was a big relief for both of us.Now I have to say
that I had not made the decision to BE transplanted,but I
wanted all my options open to me.
On the ride back
home we talked about the days events and wished we had asked
a whole lot more questions than we had. I will tell anyone
today to make a list in writing of questions you might have.
Take a pen with you to write down any that may come up and
ASK them. Dont be
intimidated by any health care professional. Its your
life and you have the right to know. I fell asleep on the
way home and it was around 8:00 PM when we arrived. So my
first appointment with UCSF and the transplant team was more
than 14 hours from start to finish. I dont know how
they expect you to do that I was exhausted, worried, scared,
and pissed all at the same time.
Well my conditions
continues to worsen, I have had no new appointments with UCSF.
and it is 6 months later. The only test they have me do is
urine analysis every few weeks. I finally ask what they are
looking for and they tell me drugs. I get pissed, Im
too sick to eat, in constant pain from my swollen liver that
doesnt hurt cause it has no nerve endings, am limited
to 1 liter of fluid a day because of the ascities and they
are checking me for drugs!!!! I ask when you gonna list me?
They say after all the test are done so I say lets get started.
More of the same I piss in the jar every 4 to 6 weeks and
no other tests.
My lung collapsed
again and back in the hospital I go. They drain me off increase
my diuretics and back home I go. The saving grace to all this
is my GP, Dr. Y. He is learning as much as he can about HCV
and other liver diseases. It seems that I was his first but
he knew I was not going to be his last. This man bent over
backwards to do what ever he could. And believe me he did
a lot. When the pain got so bad I could no longer tolerate
it he gave me a never ending supply of codeine. Dont
think I abused it cause that didnt happen but when I
needed it I had it. There were a few time the codeine didnt
work he would then make sure I got a shot of Demerol (Im
such a light weight 60 mg would knock me out). He offered
me morphine if the shot didnt work, I never needed it,
so I never took him up on the offer.
I know that some
have had one hell of a time getting anything for the pain.
I was lucky my doc knew me and he had no problems in prescribing
it. I did have a problem with one of Kaisers pharmcist. He
wanted to give me something that was metabolized through the
liver I said no way, are ya trying to kill me off sooner.
He went back to his book and said the codeine should work
as it is metabolized through the kidneys. He was actually
a pretty nice guy he was like the rest of the
world, he knew nothing of HCV.
Well another 6
months has passed, still pissing in the bottle every few weeks,
still getting sicker and sicker and no Im still not
listed. I have had no test and Im getting pretty depressed
about now. It has now become almost impossible for me to work.
I have an hour and fifteen minute
drive to get there. Once I do I have to take a 2 hour nap
to recover from the drive. Fortunately I work for emergency
services and we are kind of like firemen. We respond when
needed, make hourly patrols of our areas and kind of just
wait the rest of the time. I was no longer able to make the
hourly patrols at least not when I first got to work. But
the guys I worked with were great, they had been carrying
me for months now. They would let me slip off somewhere and
take the nap I needed. I believe the bosses even knew I was
doing this and just looked the other way. I guess loyalty
and hard work has it rewards.
But I know the
end is getting nearer. I work and sleep and sleep and work
and not much else. I toil with the decision to quit. If I
do HOW do I support my family. My wife cant work shes
disabled. I have 4 school aged children at home, who are always
needing something. Im not old enough to retire, not
old enough to draw Social Security benefits. I feel like the
weight of the world is on my shoulders. The ones that have
always been so big as to carry not only my problems but anyone
else who need some help carrying theirs. My knees are starting
to buckle, my back is bending, and my shoulders are sagging.
Im looking old, tired, and worn out. My skin is so yellow
people are asking about it. My response is I have a liver
disease. I had learned when I first found out I had HCV that
telling others was not in my best interest. I had friends
I had for years stay as far away as they could. They were
under the belief that you can catch it like HAV. That HCV
was highly contagious after all that is what they had been
taught. They had no idea that a hand shake, a hug, a kiss
was of no danger to them.
I was now feeling
isolated, alone with the weight of the world on my back. I
was running out of options even though I had closed no doors.
I tried to keep a positive outward appearance, pretending
to be upbeat and happy. inside I was a real mess. It started
showing I was getting short tempered, little things that never
bothered me in the past was making me go off. Yelling and
hollering all the time, man it must have been hell living
with me. During all this my wife had her own problems with
her health both physical and mental.. I sure wasnt helping
much. But we still loved each other and was trying to do the
best we could. Funny thing about this disease you do have
your good days and your bad ones. The hepper fog makes ya
forget more than just where you put your car keys.
Well I could no
longer go to work and face my co-workers. They were being
great and just doing my job for me when I couldnt, but
the guilt I felt was unbearable. I mean I know in the past
I had carried most everyone of them for one reason or another.
I know they were just repaying the favor. It just wasnt
me, I felt like a goldbricker. So I went to my boss. I explained
what had been going on. He said dont tell me anything
that may have broken any rules I am your boss. He then grinned
got up and closed the office door. That was usually saved
for those with disciplinary problems. He then said he was
aware of the situation and was waiting for me to decide how
I wanted to handle it. I said Im open to any suggestions
you might have cause I am running out of options. He suggested
that I retire. I laughed cause I knew I was not old enough
to. He smiled again and said he could get me grandfathered
to minimum retirement age and get me out on a medical retirement.
But and heres the big but it would not be anywhere near
my retirement salary as it was still based on years of service
and I didnt have my 25 years in as yet (I only had 10).
Oh what to do what
to do. I checked around and SS has disability retirement (well
sort of). I checked it out and according to their guide lines
I qualified. So I applied and retired from my job at the same
time. Well what I really did was use all my vacation and sick
leave as the medical retirement was being processed and the
SSD was being decided. I was a little short of time so the
guys at work donated about a month of their own personal leave
time to cover me. My SSD was approved after much testing and
my retirement came through without a hitch. It is pretty small
but we got by without to big a change in our life style.
note the testing UCSF should have been doing the Social Security
Dept. did to decide weather I was eligible for SSD. A big
part of my decision was that I wanted to spend the time I
had left with my family. I know that may sound like I had
given up but I never did. I have heard that from many, family,
friends, even a few of you. To set the record straight I never
gave up, I planned for the worse and hoped for the best. And
I didnt worry about the outcome. I had made my piece
with my God many years ago. As far as family and friends they
all should have known better some did some didnt. I
did not let this trouble me either. I had my life to live
and I would live it my way.
I called UCSF one
last time to find out what was going on and were I sat. They
said go and see this drug counselor and that we would go from
there. I was literally speechless at this. It was now 18 months
after our first encounter, countless piss test later (they
were always clean except for occasional codeine) and they
want me in a rehab program. I just could not believe this.
So I went and checked this guy (doctor) out. Sure enough it
was a substance abuse center and he wanted me to enroll in
their outpatient program for at least 21 days. All that and
we never had had interview. He ran no test Asked no questions.
Just had my file in front of him.
I did ask cause
this was one of my better days to see my file so that I might
determine what was in there causing this reaction from all
these health care professionals. He told me know it was confidential
and was not at liberty to allow me to read it. I about shit
right there. I said how confidential can this be, its
about me! He still refused to let me read it. I refused his
offer for rehab and to piss in yet another bottle. That ended
my association with UCSF as I figured they were never going
to list me.
My wife had stated
that she would move back to Utah after I died. I was a little
disappointed but understood why she would do that. This is
where her family is. Well after thinking about it and doing
a bit more than a little research I decided to move the whole
family here. This was my home also, I love the Uintas Mountains
and said if I have to die somewhere let it be somewhere I
love. Since I didnt know a sea captain that would let
that happen on his ship or boat I opted to return home.
Here is what played
the biggest part in my decision. Salt Lake City has the highest
rated transplant center for its size in the country. Its director
travels all over the world performing transplants and trains
more than 20% of all new surgeons in this field. This is also
a very moral state, they would not let anyone die because
they had a personality conflict with them. That would never
even enter the equation. Also I found out I had a relative
working in the hospital that the transplant would take place
in. God bless uncle Kenny.
Now as I stated
earlier I was feeling pretty good all things considered. Its
amazing how sick you can be and not even acknowledge it. So
I talked with the wife and kids and we all decided together
to move to Utah. I didnt want to live in SLC again as
it has turned into a less than desirable place to raise a
family. Since I had a retirement and SSD to fall back on I
didnt have to worry about getting a job. We could live
anywhere we wanted to. I did have to consider how long it
would take to get to the hospital so I opted for someplace
within a hour drive, Thats how I got here in the high
mountains of the Uintas.
Well now its late
June and we are getting ready for the BIG move. I rent a Ryder
Truck and a car trailer. We have been packing for about a
week now, so I thought we were ready. We have a place move
to, a nice farm house in Heber. We had contacted a Realtor
and he was just great. Found us a place, understood the situation,
and went the extra mile to help us out. Right down to recommending
a place to stay when we first got there. We still needed to
check out the place before signing any papers. He called the
motel and told them who we were so when I called they had
it all took care of. Gave us a break on the price and the
best room in the house. They didnt even make a fuss
about our pets (2 dogs and 2 cats) even though they didnt
Well the truck wasnt there at Ryder when they said it
would, the trailer showed up even later (like they were closed
when it got there). Friends, family and neighbors helped out
in the loading and cleaning of thehouse. I dont think
we could have done it without them. I mean I was really sick
by this time. But I pushed myself as hard as I could. I had
no strength to speak of. I couldnt even ride my bike
up the truck ramp. I fell off the side of it. Kind of like
Arty on Laugh-In on the tricycle. I made up an excuse hoping
no one realized what really had happened. I didnt want
anyone to know how bad I was really feeling. I didnt
have the energy to lift one more box when the truck was loaded.
I barely was able to pull myself into the cab.
I told no one how
tired or worn out I was feeling. As hind sight that was a
really stupid thing to do. I should have spent the night there
and left the following day. 10 hours that day packing and
loading even with the help of friends and family did me in.
I had thought that I had hid it pretty well but have since
found out that more than one person thought I wouldnt
make it to Nevada.
Well we did make
it to Nevada, spent the night in some rinky dink motel that
charged an arm and a leg for hollow walls and window heater/air
conditioner that only worked marginally. Or maybe it was just
me seems like everything was going wrong at this point. When
it was actually going pretty good. One of the cats decided
he didnt like riding in the towed car, so he jumped
out and took off. He soon returned to the car as it was the
only thing he was familiar with. Yes he made it here with
us (snaps fingers and cusses under breath). As I am not a
cat man/person. I should add to that, that we now have 3 cats
and heres their ages 17, 10 or 11 (just not sure on satchmo)
and 1 and 1/2 (a rescued cat according to my son). Seems like
once their here they never want to leave!! I swear its just
like having kids only kids quit making do do messes and cats
never do!! enough on the home life.
Well we get here, check into the motel no hitches, no glitches.
Call the Realtor and make an appointment for the next morning.
The wife and I go up and check out the house. We fall in love
with it. Its under 100 years old has been rebuilt/remolded
over the years. Has a quaint little mud room (a place to take
off your outdoor clothes). A root cellar, large yard, three
bedrooms upstairs (which we latter found out had no heat)
a gorgeous dinning room, just a real nice place. What we didnt
know was it came with the landlords from hell. Seems this
house was there mother's and she lived there from the time
it was built until she passed. They never could see it any
other way. It was always going to be their moms house. Now
we were renting and we had every expectation of buying this
place from them. But within six months that all changed.
Now I was doing
great. I mean when we got here and moved in (had lots of help
from one of my wives sisters family) I was worn out. It took
a couple of weeks for me to recover but I did. I then got
a doc up here. Hes a family Practitioner and a pretty
good one. He took great care of me for as long as he could.
My youngest joined the Boy Scouts and I soon found myself
going to all the meetings and outings. This was great fun!
I mean it was as if I was a kid again, only I had some responsibility.
The summer passes
and turns into fall. My kids were in awe of the season change.
They had never really seen the seasons change in their life.
Living in Calif. can do that to a person. Yes they had all
seen snow cause I would take them there in the winter. But
nothing I mean nothing
can compare with the changing seasons for breath taking beauty
and the shear emotions it emits. The maples, elms,aspens,
and evergreens are just amazing. The leaves changing colors,
yellows ranging from the palest yellow to the deepest gold
tones, shades of orange ranging the
full spectrum including the deepest richest oranges I have
ever seen! Then changing into a vibrant red, some with tinges
of orange and yellow on the same leaves. Place these trees
on a hillside or mountain that the grasses have turned to
the color of amber wheat, that the sage brush is a pale soft
green with gray tints to its underside and a brushed tanned
textured to the branches, outlined by the ever deepening green
of the pines around them. It is breath taking and I now wonder
why I ever left this country.
I am still feeling
like there is nothing wrong. Yes I do tire easily but I have
gotten use to that and have made the necessary adjustments.
I am doing everything that I always have, it just takes a
bit longer and at times I need some help. My son was great
when it came to this. Not that he always wanted to give up
his time but he always did. This brings to mind the time we
changed the brakes on his moms car. I mean he was twelve,
had no interest in wrenching. To be honest he would rather
have been back at the creek or irrigation ditch playing in
the water with his friends. But he jumped right in and in
a couple of hours his mom's car had new brakes. I will add
that the job he did was at least as good as anything you might
have done at Midas. That was 2 years ago and they are still
Well the kids are
now back in school, the wife has told them (the school) that
I am sick. She explained that she didnt know what was
going to happen and that the kids may need some time off.
The school district seemed to understand and did all they
could to make the transitions as
easy as possible on everyone. Seems when you tell someone
that your spouse is terminal they bend over backwards for
you. Though this is second hand as I never had any conversation
with the schools or the district.
There was the usual
new kid on the block situations at school. Being
from Calif. 2 of my kids had a time of it. My oldest well
she was always the book worm anyway. Though she was the *new*
girl in town and had more offers than she knew what to do
with. But alas she was not interested in boys at that time
(I was glad cause most of them were just jerks, a fathers
point of view), she was too focused on her studies and getting
into a good University. Josh and Nikki on the other hand were
into everything. Pushing their limits both at school and at
home. I can only imagine how hard this all must have been
on them. Not knowing when/if their father will there for them
in the future. Or even tomorrow as far as that goes.
There were *incidents*
were one or the other of them were going to get their butts
kicked or kick someone elses butt. Shesh was that a
trying time for the wife and I. Wanting to believe that your
child is right and that it is all the other persons fault.
But also knowing that your *lil angel* has their dark side
also. Fortunately all worked out fine no one got their butt
kicked and they have even became friends with some of those
The first snow
of the year, that is always something special. Even when you
are raised in snow country, the first snow is always the best!
Yeah yeah yeah I know you either love it or hate it. Seems
there is no in between, I happen to be one who loves winter
and all it entails! I love
tubing, skiing (though I didnt do it as I was too sick)
making chili and hot cocoa for the cold winter days that you
are out playing. I will admit now that I am older I do prefer
a warm fire over old man winters frosty breath. But I like
throwing snow balls, making snowmen and angels in the snow.
Well we had one
storm that dropped about 18 to 24 inches of snow (welcome
home Marty). So I run down to the local hardware store buy
15 feet of rope, go over to the 5 and dime and buy a couple
of snow toys. You are wondering why the rope? Well I fire
up ole blue (my 4x4 beat to death almost truck) attach the
rope to the hitch the other end to the bob sled, load up the
kids and away we go. We had 14 ac behind the house a perfect
winter play ground. It wasnt long and the neighbors
kids were there wanting to be pulled behind ole blue and play
in the snow. I was more than willing to oblige and burned
out a tank of gas that first day, life is good.
Its now December, time for the Kondike Camp out. For
those of you not familiar with this, it is when the scouts
go and spend the night in ice caves. I mean not literally
as we seldom have that much ice around here. What we do is
dig snow caves and spend the night there. This year that
was not to be. The snow we started the year with stopped!
It was cold at night but no snow on the ground. So we went
to Soldier Hollow (you will here of this place during the
2002 Olympics) for the camp out. It was a blast! We built
white man camp fires (meaning bon fires) not very scout
like. Played capture the flag until one of the kids got out
of line. The usual cook out for dinner and breakfast. Then
we walked over to watch the Bi Biathlon and the scouts got
to do a little cross country skiing on the race track. Here
I have to inject that the walk was in about 4 inches of MUD!!!
As the weather warmed up during the day and got below zero
Sound like fun?
You betcha it was. Lunch was supplied by the scouts, consisting
of chili and donuts and hotdogs. I tried the chili it was
just eatable, passed on the donuts and dogs as they did not
liver. Now here I need to make a note to all of you. My diet
had changed. Not a little but a lot. I no longer could eat
the foods I loved. I was pretty much down to pasta and veggies
at this point. In Calif. this would have been no problem,
here in Utah it was. Produce here is sold at a
premium. So fresh fruits and vegies which were a norm in Calif
and had to be available here were costing us a small fortune.
An example would be apples on sale they are .80 a pound regular
price is about a 1.00 a pound. We were use to paying .30 a
pound. Oranges are even worse.
Head lettuce (iceberg no nutritional value) averages a dollar
a pound and you dont even want to know what tomatoes
cost here. But that was all I could handle as my liver was
getting worse daily.
I still felt pretty
good going to scouts weekly and living life to the fullest
for me. Well after the camp out I took a turn for the worse.
I got sick and started the fast descent down hill. I never
did recover from that camp out, though I would not have done
it any other way. From this point on both my physical and
mental conditions worsen and never get back to what they were
before the Kondike.
I have forgotten where I left off last time and my work has
some how been lost. Kind of made me want to cry. I am not
looking forward to living this yet once more. I may have taken
my time and it may have seemed like it would never happen.
As promised here is the rest of my story.
It's a very cold
day in January 1999; my son and I are getting ready for the
Kondike Camp Out. The Scouts annual winter trek to sleep in
ice caves. We get there and the weather changes it gets warm
about 35 degrees man it's summer I say. Well we get camp set
up the scouts are great. They all know that I am sick but
not how sick or even what I have. But like true scouts they
pitch right in get the tents set up make a place for the camp
fire, then off for a game of King of The Hill (they call it
Capture The Flag). Man those boys never run out of energy!!
Well an hour or so later I am worn out, wet, frozen, and ready
for a cup of coffee.
So back to camp I go and now it is getting really cold, the
temp has dropped to 10 degrees and is still falling. So I
think hey I'll start a fire. No such luck as the scouts needs
to earn a merit badge doing this. So I call in the leaders,
they get the boys who need their badge. So they build a fire.
The first thing I hear is "where's the scout water?"
Scout water? What's scout water? I soon fine out its white
gas; Coleman stove fuel, or unleaded gasoline, depending on
what was brought. Way different than when I was a scout. So
the troop stacks wood consisting of roof shingles, pallets,
logs (true logs about 6 feet long) a broken chair (not wood)
and a table that is missing a leg. Get the idea here. I was
amazed because when I was a kid you built your fires no larger
than you need to. Bon fires where saved for tribe gatherings.
Well the younger scouts soaked it with their scout water,
stepped back the appropriate distance and threw a lighted
match at it. After several tries they succeeded and earned
their fire building merit badge. What a huge fire they built,
flames had to get over 10 feet high and kept us all warm and
toasty well into the night. We cooked dinner, sang a few songs
(none of which I knew the words too) and turned in for the
night. It got down to 20 below zero just before dawn and I
was just exhausted. But we had planned to take the troop over
to the Biathlon.
The sponsors had promised to teach then cross country skiing
and how to shoot the 22s at those little round targets after
skiing. So we went watched the competition and let the troop
loose. They were such gentlemen; most of then has been skiing
all their lives. Well then we had chili and doughnuts for
a late lunch and packed it up and head back home.
Well I'm home and
I'm getting sick. I have no energy, my strength is gone, and
I am in constant pain. I have never been so sick before! Up
until now I was doing everything you could think of. Well
after a few days I started getting better. I convinced myself
I was just worn out and had over done things. So I started
taking up my old routine. Going shopping for groceries, running
the kids all over, and getting ready to move. Did I tell you
before we had decided to move from the 103-year-old farmhouse
we were renting? It was a land lord thing we really loved
that house and were planning buying it if I survived this
Anyway in Feb. we moved, less money, more land, unfortunately
it was also a smaller house. Well the scouts helped and I
could not have done it without them. My wife has her own view
of this, but that's a whole different story. To make a long
story short I moved most of the lighter stuff, I mean I had
a month to get the move done and it took everyday of it!
At this point I
knew there was something-different going on inside. Although
I didn't want to admit it I knew there was cancer now eating
my liver. This is about the time I would come over to the
group and stay about as long a finger snap. By the time I
got signed in, chat program fired up I was to tired to type.
I hurt in places I didn't even know had nerve endings in them.
I am swelling up like a balloon and breathing is getting difficult.
So off to bed I would knowing full good and well I was not
going to be sleeping. But at least I would not have to hold
myself up. Well my GP gave me some ambiem to help me sleep.
I will tell all of you they really don't work very well at
this stage. My wife insists that I did the overdose thing.
But I can tell you that it never happened like that.
I got so weak
I could hardly stand let alone walk. I could not breathe and
I looked like half of the Goodyear Blimp. What was happening
was my right lung had collapsed from the fluid build-up in
my chest cavity. When we got to the doctor they wanted x-rays
and I had to be held up in front of the x-ray machine. I was
not very coherent and could hardly speak. Well they slapped
that little gizmo on my finger to check my O2 level. My blood
oxygen saturation was 79% and their whole office had a cow.
Off to the hospital for Marty. They also had the x-ray and
could see that my lung was collapsed. Well ole doc Burton
did his thing and stuck me in the back with that huge needle,
drained 3 liters of fluid off and I could breath again. Regained
my strength was able to talk again and all seemed fine. He
upped my dose of diuretics and things were fine for about
Then it happened
again only this time I was not so lucky with the procedure;
he nicked my lung with the needle. This was to the first of
many nicks and close calls. If you will a prelude of things
to come. By now I am in constant pain! I guess I was becoming
use to it. When they would ask I would tell them it's manageable
right now. But my wife would insist that they give me something
for it. So I would take home a script for codeine. After the
hassle in Calif. I was very careful not to use them too fast.
Also I didn't like how they made me feel. I always got sick
to my stomach at least for the first few months, and then
they did nothing.
Now I make my
3rd trip to the ER for a collapsed lung. They admit me again
the doc comes in drains me off and by the next morning I'm
full again. He takes another 3 liters of fluid and is wondering
what he has gotten himself into. I manage to go about a week
before I have to go back into the hospital again. Did I tell
you they put me on oxygen the last time? Well they did and
it made me mobile again. Load up the cart and tank and off
to the store I go. No my wife was never with me. Hey I had
my own key to the handicap cart to ride around the store in.
Someone had to do it guys. I won't even begin to tell you
it was fun or anything like that. It really sucked. But the
stores in our area were great. They always helped me out and
then would return the cart for me. So all I ever had to do
was to get inside the store, when I could no longer walk that
far they would bring it out to me. Now that is service! I
tried to give them back their key and they told me to keep
it as a memento of the not so good days.
Well now I am really
sick it's mid February and I am in the fight of my life. I'm
back in the ER and the ER doctor that is on duty refuses to
do anything for me. He states that I am doctor Belnap's and
he will not step on his toes. I am devastated I can't breathe
even with the oxygen what am I supposed to do I ask. He says
it is not his call. I drag myself grab him by his wrist (I
have no idea where I got the strength) told him to grow some
balls or get my doctor in there. He sent me to a room (admitted
me) and in about an hour good ole doc Burton came in. He looked
down at me and smiled. Then in his soft-spoken manner said
what are we going to do with you? You have that ER doctor
scared to even look in on you. I told him we both knew what
had to be done and his associate was just a whip. So he drained
me off yet again another 3 liters and then another 3 liters
6 hours later. That is when he told me I was past his expertise.
So what's next I ask. He tells me he has made an appointment
with doctor Belnap at LDS Hospital. So I finally ask who this
guy is and he tells me the guy who is going to transplant
you. Well you all can believe how skeptical I am. Oh Boy another
transplant team to deal with. The last one was so helpful.
Well I have to wait 2 days to go in and see him.
By now I am in
a wheel chair. I can only walk a few steps and then I MUST
rest for awhile. By awhile I mean I need to take a nap of
2 or more hours. Life is really beginning to suck and I am
doubting if Mr. Tough guy is really tough enough. I kept reminding
myself that I promised I would live at least long enough to
see my youngest son graduate from high school. The fight goes
on, the battles get longer and harder. I sometimes wonder
if it is worth it, but I just don't know how to quit or not
give it my best.
Well now I get
to meet the world-renowned transplant surgeon, Dr.Belnap.
We arrive at LDS Hospital a little early not wanting to piss
Mr. god off. They bring me out a wheelchair and a golf cart.
I mean the hospital volunteers gave me a ride into the lobby
and drop right where I have to sign in. They were so nice!
Now they tell me you don't have an appointment Mr. Cohen.
I'm on oxygen, I know I have another collapsed lung, and look
like an earthworm slumped over in that wheelchair. They tell
me to take a seat and they will see what happened. What they
did was nothing.
me Karen was there and she asked this nice volunteer named
Sandy if she could help us. She (Sandy) made the call to my
doctor and then took us back to the transplant clinic. Again
I get to ride on the golf cart and it seemed like it was miles
away. She takes us up to the registration window and helps
us get signed in. As sick as I was I can tell you it was a
Tuesday as they were having clinic going on The waiting area
was packed with transplant patient, those waiting for transplants,
and their loved ones.
Well Dr. Belnap
is in meetings and we wait and wait and wait for what seemed
like forever. I really don't know how long it was but it was
a long time. I was nodding off and the waking with a start
over and over again. This alone was frightening as every time
I nodded off it was because I was not getting enough oxygen.
When I would stop breathing my system would kind of jump start
itself. I don't frighten easily and this was terrifying, well
he finally is free to see me. I had no idea this appointment
was going to take place in the waiting room. He walks up ask
if I am me and I am. He then begins to scold and holler at
me in front of God and everybody. I guess I should have been
embarrassed or pissed or something but I was just to damn
sick to even care. The only thing I remember him saying is
and I quote "Why the hell did you take so long to come
in for?" I didn't know it at the time but he had my file
in his hand and has just read my latest labs. I guess they
were not that good.
I need to say
here I did not think that I was dying just sick as a dog.
I knew as soon as they got the fluid off I was going to be
fine again. Funny how you can convince yourself of these things.
It must have been the ammonia my brain was floating in by
now. Well he had them admit me and all the test started all
over again. I still cannot believe that these docs can't even
believe their labs.
This also started
my regular trips as an in-patient. Well they take me to the
floor for liver patients only right now it seems that they
are all cardiac patients. I get scanned probed introduced
to all the team. There is this one doctor from India I do
not remember his name. But man was this guy so far off base
with what the wanted to do to me. His most important, top
of the list, was to check me for hemorrhoids. This guy would
not let up until he got to stick his finger up my butt. I
have always wondered if when he left the room if he sniffed
his glove. I never did see him throw it away.
They decided to
drain me by ultra sound. They said it would be safer and quicker.
I said hell yes lets get it on. I really did want to breathe
again. So what seemed like the middle of the night they whisk
me of to the basement and x-ray. They take a few pictures
(I got to know all the x-ray techs on a first name basis over
the next 3 months and) say yep there's fluid in there. Call
upstairs who then tell them to call this one doc who shows
up like out of nowhere. He throws the guidelines out the window
and drains 6 and a half liters of fluid from my chest. All
of a sudden I am the talk of the hospital staff. A couple
of the techs called me Aquaman. I still chuckle about that
it was even funny then.
Well back to my
room I go feeling like a kid again I can breathe, no bloating
in my abdomen, and getting my strength back. I think I am
going to get a peaceful night sleep nothing was farther from
the truth! Every hour on the hour they came in woke me so
they could take my temp and blood pressure, give me meds and
ask a bunch of more than obvious questions. Nothing that could
not have waited until morning. Well they kept me 5 days this
time during which I had to blow in a machine to see if my
lungs were working properly. I had cat scans, did their star
war room heart test. I was to weak for a real stress test.
But this room was soooo cool. The torture device they called
a bed was right out of King Arthur's dungeon; it was about
6 inches wide made of something very hard and covered with
a sheet. The pillow was OK though. But this test took more
than an hour and I was dying when they were done. My back
hurt so bad one of the interns came in and gave me a shot
of Demerol. Now that stuff makes ya goofy and pain free, it
also makes ya sick at least it did me. When Karen heard how
little the shot was she called me a light weight. Compared
to what she gets I guess I am. That suits me just fine.
Well my 5-day stay
is over and I have to be back on Tuesday for clinic. Now these
were living hell for me. They would make appointment with
other departments in the hospital on the same day. Sound cool,
think again. Clinic never opens before 1:30 in the afternoon,
they would start me off at 8:00am in radiology, noon at another
department (I don't remember what it is called, but it is
where they check your lung functions) then a 3 o'clock appointment
at the clinic. When the day was over I was in bed for 3 to
5 days recovering from them saving me. I had Karen ask them
not to make so many things at one time and to please get me
into clinic as early as possible. I guess I should say that
3:00 is the last appointment of the day and you usually don't
get in until 5:00 PM.
did just what I asked, I should have known something was amiss.
I still did not believe I was that sick that I needed a transplant.
And the battle rages on. I should say that for the most part
I was always upbeat and pleasant to everyone at LDS. I believe
this more than anything is what got me listed. The will to
live and fight on and not accept that I was this ill. Course
that is just my opinion, they may have seen it differently.
I have been back
in the hospital 3 times now since the first visit. Am in for
5 days and out for one. This lung thing is going to be the
end of me. They have told me to turn up the amount of O2 on
the regulator. I think they were hoping to saturate my blood
with it but it didn't and back in I go again. Now I have had
enough I tell one of the surgeons that I am tired of this
in and out and that I am spending more time in the hospital
than I am out of it. Now we are going to do something about
it. I remember this part as if it was last night. I told them
if they could not figure it out too, then put a tube in my
side with a valve on it and I would drain myself off when
I needed it. Can you believe that I still didn't think I was
.. Well I didn't. The Battle gets serious
and wages on. I think I should paint you a picture now. For
those who are squeamish you may wish to look away.
Some of have seen
pictures of me some of you have not. So here is an honest
description of me before. I am 6 foot 2 inches weigh 225 pounds
have dark brown hair and a full beard that was salt and pepper.
Basically I was built like a brick outhouse, 17 in arms and
a 48 in chest. I know this cause I was measured for a calendar
that was put out by friends of Caltrans (it was a charity
thing). But a lot of fun too and no I wont tell you were you
can get !
Now I was 245 pounds
my arms are 10 inches I do not know what my chest was but
I grew boobs. I do know my waist went from a 36 to a 44. I
look like someone painted me with a bad batch of no sun, sun
tanning oil, my perfect teeth are starting to rot from the
years of diuretics, I can no longer stand completely erect
and I walk with an old mans shuffle. I have lost all body
hair and have shaved my head as the three strands left looked
like crap. For some reason my beard remained mostly intact.
It thinned a little but I was the only who noticed. Now may
face has the look of a concentration camp survivor, eyes are
sunken into the sockets, my cheek bones are protruding and
the skin looks like a Joan River face lift. I look frail and
fragile, don't touch that man he might break. I even had a
kid ask me if I was real or did someone make me. At least
he wasn't afraid of me. Well now ya have an image I hope I
didn't ruin any ones dinner. The Battle rages on!
Well I don't get
my drain cock that I asked for; instead they want to try an
experimental procedure. I never thought once that I would
ever be a human experiment but here I am going into surgery.
The procedure is called a modified Denver Shunt. Let me explain
a Denver Shut is a device that is implanted in your abdominal
cavity. It drains the fluid in you abdomen out into a plastic
bag or back into your body through a vein or artery. A modified
Denver Shunt is one that is placed under your breast and has
a pimp on it. It drains the fluid from your chest cavity to
your jugular vein. Well that was how it was supposed to work.
The pump was to keep it from clogging so the fluids could
always be able move. What it ended up being was the only way
to move the fluid out. I was supposed to pump it 4 or 5 pumps
every hour or two to keep it open. What I found was I had
to do it for at least a half-hour every 2 hours to keep the
fluids down to a tolerable level.
Now I'm treating
you like the docs treated me please forgive. Fluids = poison,
the bile that your body produces is processed in the liver.
Mine was not, it was being dumped into my chest and abdomen
so every time I I pumped it out of my chest I put it in a
vein for my tasting pleasure. It was nasty and awful, it made
me vomit, it made me smell like death, even my giant loyal
and faithful Mastiff would back away after I had just pumped
myself. I would pump and get so sick I don't know how I tolerated
it. I then would fall asleep wake up and within a half-hour
I would do it all over again.
Sound like I had
any quality of life? But I get ahead of myself again. During
this visit to LDS, the intern in charge of my case decides
that it is time to stop all diuretics. So he writes the order
and I am on my own to get rid of the fluids. His thoughts
were I was just taking too high a dose. I have to admit I
was, but it was the only way to keep the fluids down. Well
this kind of backfired instead of my body taking over I went
into renal failure. I could no longer urinate and begged them
for a catheter. Of course the nurses could not do that with
out the doctors orders so I lay there in total misery. I mean
it was hours before he ever came in to see me, I was ready
to explode when he got there. I was not a very nice person
when I saw him; he and I had words. He puffed his holier than
thou, I'm the doctor and I know best. I told I'm the patient
and I know what I need. That I had more experience with this
than he did. Finally I said look I can't pee and I'm dying
here all I want from you is to OK a catheter. Run all the
labs you want but put me back on the diuretics and OK the
stupid catheter. I told him you think I like having that thing
stuck up my d**k?
Well that did nothing
for doctor patient relations, but he ordered the catheter,
ran his labs, and before the day was over I was back on diuretics.
A reduced dose at first but the other doctors on the team
raised them back up. I have to tell you this kid was not happy
being over ruled by his superiors. For the next little while
every time I saw him you could see it in his face. To his
credit he remained professional for the most part and never
did anything to intentionally harm me in any way.
I never did find
out what the labs showed, but Karen told me that I had gone
into renal failure and the Team was very concerned that I
might not recover from that. After bouncing back from this
(if you want to call it bouncing) they placed the shunt. I
then met with the lady from the drug treatment program, the
social worker again (what a waste of time that was), the psychiatrist,
and a host of others who I have no idea who they were. There
was this issue of whether I was going to be listed or not.
I finally just came out and asked what the hell is going here?
Are you people going to list me or not?
Well it seems
I got a bad rap from UCSF in Calif. They said I had a drug
problem and was not a good candidate for transplant. It took
months to get my files from them and when they did they found
that what I had told them was the truth. They had 18 months
of biweekly drug testing and the only drugs that ever showed
up is what the doctors had me taking. They gave me credit
for all that time and added my name to the list. It didn't
get to the top but I found I was in the top 5. Seems odd that
they would just believe some one they had never met over some
one they had. I mean I was interviewed by at least 6 different
professionals, they all heard the same thing for the most
part. Sometimes dates were off, or events were slightly changed,
but it was always the same.
I know you can
understand brain fog, at this point I really had a case of
it. Sometimes not remembering yesterday or even this morning.
Well now I get my pager and I find out I live at it's limit.
Meaning that I can't go fishing where I like to because it
will put me out of range. I laugh when I think I actually
said that to them. Hell I was too sick to go to the front
room most days. Getting to the bathroom 20 feet away required
a rest stop. I had to drag the air line wherever I went. Being
on oxygen was real fun too. They gave me the portable tanks
of pure oxygen and an oxygen-making machine. At least that
is what the company said, I can say there was a great difference
between using the tanks and the machine. When I would get
really bad I would switch to the tanks because they really
would raise the O2 saturation in my blood. Where the machine
would allow my blood O2 drop below safe levels wherever I
was on it.
So let's fast forward
now as nothing changes much after they install the Modified
Denver Shunt. I wake up and within the hour I start pumping
off the fluids, I get sick, I vomit, I get headaches, muscle
pains, abdominal pains, I can't breathe, I'm exhausted, I
have no strength, and basically I am a prisoner in my own
home. This continues day after day after day until the call
comes from the clinic at 1:30 AM on May 30, 2000.
Karen comes into
the bedroom and wakes me telling me it's the Transplant Clinic
calling and they have a liver for me. I take the phone and
the young lady asks can you be here in 45 minutes? You don't
need to shower or anything-just get here she says. I tell
her I'll sure try but you know I live over 50 miles away?
Well at 2:00AM there is no traffic and I drove myself to the
hospital, of course Karen was with me. It's a guy thing about
driving. We get there 45 minutes later and they are waiting
for and everything is ready to go, nothing like the other
times. Within 30 minutes I'm at the Operating Theater meeting
my anesthesiologist. He gives me a shot to help calm me (not
that I needed it I wasn't nervous one little bit) and I was
out like a bad light bulb.
The next thing
I remember was waking in the Shock Trauma Intensive Care Unit.
Now I never did get to see what I looked liked but it must
have been just awful for those who did. What I remember is
the feeling of choking and not being able to breathe
still! It turned out to be the respirator and all the tubes
they had stuck down my throat. They began removing them as
soon as I asked and thing were much better then. Next came
the little sponge of water, what a tiny little thing to give
a thirsty man. But they were great about it even slipping
me a piece of ice to suck on.
Within 8 hours
I'm in a private room with my family surrounding me. I was
feeling like a new man and I was. The next eight days were
something to behold. I was weighed three times a day, my blood
pressure was like forever monitored and I had needles and
tubes everywhere you can think of. Now most of the tubes were
gone by day 3, no all the tubes were gone by day 3. I just
had the IV in one arm and another IV in the other. One was
feeding me a steady diet of pridisone and some other stuff
while the other was waiting for the emergency that never came.
The next day after
surgery I get out of bed and take my first steps. Not too
far mind you just to the restroom and back, but the docs are
impressed. The next day I walk the halls a bit but now my
body is starting to swell. I ask and they say it is perfectly
normal for some swelling to occur. They keep me on the IVs
adding more fluid to me, now I can urinate just fine and don't
need any meds to help. But I am still getting bigger and bigger.
So I ask again and again they say this is normal. I now look
like the elephant man my ankles are the size my calves use
to be; my scrotum is the size of 2 very large cantaloupe.
I am worried, I mean really worried I look like I might explode
any second! But I get out of bed and walk the halls I know
every inch of the floor I was on and a few others as well.
I guess I should tell ya I hung my scrotum in a hospital gown
so I could get around. It must have looked funny cause I got
the looks wherever I walked.
Now I am venturing
to the lobby downstairs to visit with Sandy the lady who helped
us so much. She is such sweetheart. I run into one off my
docs and he seems surprised to see me off my floor, but they
told me to walk. I am now starting to go outside and I take
a walk around the Hospital. That was the wrong thing to do.
It was 100 degrees and this place is on the Avenues meaning
really steep hills. But it didn't kill me and I never did
Well we are at
day 5 and the swelling is starting to go down at last! It
takes much longer for it to go away than it did for it to
get there. I am now getting to eat (I think this happened
around day 3 or 4) I had to have a bowel movement before they
would let me eat, I have no idea how they expected that since
I had had no food for days. So the day I farted I told them
it happened, hey I knew it was working, I farted didn't I.
They told me to
eat and eat more so I did. I asked what can I not have, they
said nothing, you can eat anything you like. Just try and
get lots of good protein. Ever try being on a high protein
diet in the hospital. Breakfast consisted of eggs, bacon,
pancakes, toast, cereal, muffin (English), hashbrowns, fresh
fruit, skim milk (yuck), juice and coffee. Not much protein
in that menu but I got by. The food there was actually pretty
good most of the time. The only thing ya had to watch out
for was the Halibut. When they did it right it was so good,
but as often as not they leave it in the oven or warmer too
long. Nothing as tasty as dried out Halibut.
Well at day 6 they
decided that I was not getting protein so they supplemented
my diet with an Ensure type product. But it was warm and tasted
awful. I got the nurses on our floor to take it from the aides
and freeze it for me. Now it was eatable and I quit complaining.
Did I say complaining oh wow I must be getting better.
On day 8 they released
me but told I had to stick close by and they arranged to have
me stay in one of their houses they used for transplant patients.
There was another couple in the home when we got there. I
thought cool, company, but the first thing I saw was a little
baby. They made such a point that I had to avoid these little
critters that I was amazed that one was in the house. But
I said what the hell it's big place surely I can avoid him.
So I go into one of the bedrooms and check it out start putting
things away, and this rug rat pops in for a visit. Well rather
than cause a scene there I told Karen lets get a motel. It
really wasn't going to be that much more and we would have
room service. So she went back and told them to check us out
they asked why and she told them because of the baby. They
jumped up and said there are no babies in that house. We told
them yer there is and it's not worth the risk. So we spent
the next week at the Holiday Inn in downtown Salt Lake City.
It was kind of fun; I got to go places that I was unable to
before. I was able to go and eat anywhere I wanted. It truly
was an adventure, learning to live again. Well the week has
passed all test say everything is a go and they say go home
Marty, so we do.
And that my friend
is the story of my journey through HCV and it's pit falls.
If I made it sound easy or like it was nothing too serious
I did not mean too. This has been one hell of a trip and I
wish never to repeat this journey. I know I had cancer develop
in the liver and that there is a risk of it returning. I asked
what they would do and they said there would be basically
nothing they could do. So I am now opting to forgo any of
the diagnostic appointments they have made for. Me, I mean
really what would the point be? If they find the cancer has
returned, and they can do nothing but watch me die. Why waste
those dollars on useless tests that my insurance only pays
60% or less of. After they deduct what they feel they are
being overcharged. Blue Cross/Blue Shield ends up paying around
32 cents on the dollar and I'm left with the rest. I'll use
that for my kid's thank you.
Well I was going
to end this journal here but I thought you might like to know
how things have gone since the transplant. So if you are interested
I'll try and write the next chapter A New Beginning, A New
© Marty Cohen 2002 All rights reserved. No part of this
story may be used or
reproduced without the express permission of the author.
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