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Marty's Story

Marty

Part I

My name is Martin but everyone calls me Marty. I’m 51, married to a lovely redhead, have 5 surviving children and I’m HCV positive. I now live in Utah again after moving back from California in 1998.

Well here’s my story I am not a writer and don’t 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 hadn’t 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 rosy.

Well that went on for a few of months then I started being tired all the time. I don’t 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. It’s 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 didn’t have a clue.

Well now I’m 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! I’m sick again.. I don’t 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 didn’t 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 don’t 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 couldn’t figure it out. Wasn’t 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 didn’t 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 don’t 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 you
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 didn’t.

Well at this point I’m not feeling sick at all. In fact I hadn’t 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 I’m 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 that’s not going to happen, I can’t even watch when the lab draws blood to this day. That was a three times a week thing for about nine months and I’m 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 I’m at a lost of how I got it, not a clue as to how sick I’m going to get, not realizing that my memory is not what it use to be, and thinking I will get better. After all doesn’t 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.

Part II

Well lets fast forward a little. My liver functions have worsened, no viral load has been done, I’m 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 won’t 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. I’m 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, he’s pissed cause he was going to go and play golf (I really don’t know if that part is true, only that he didn’t 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
can’t. 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 didn’t 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 the interns.

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 me home.

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 women’s 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 heppers.

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 didn’t 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 wouldn’t have even dented it).

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. There’s 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 my HCV.

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 didn’t last long) fear, of not knowing
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 wasn’t 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 didn’t 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 didn’t 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 report.

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.

Part III

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. Don’t 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 don’t 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. Didn’t 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 don’t 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
didn’t know what they were either and she didn’t 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 didn’t 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 just wore
out, dosing off in the chair and starving cause we haven’t 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 don’t 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 you’ve 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 wasn’t even listed. Well this doc was with
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 and
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 5’5” or 5’6”, couldn’t 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. Don’t be
intimidated by any health care professional. It’s 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 don’t 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, I’m too sick to eat, in constant pain from my swollen liver that doesn’t 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. Don’t think I abused it cause that didn’t happen but when I needed it I had it. There were a few time the codeine didn’t work he would then make sure I got a shot of Demerol (I’m such a light weight 60 mg would knock me out). He offered me morphine if the shot didn’t 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 I’m still not listed. I have had no test and I’m 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 can’t work she’s disabled. I have 4 school aged children at home, who are always needing something. I’m 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. I’m 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 wasn’t 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 couldn’t, 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 wasn’t me, I felt like a goldbricker. So I went to my boss. I explained what had been going on. He said don’t 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 I’m 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 here’s the big but it would not be anywhere near my retirement salary as it was still based on years of service and I didn’t 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.

Another little 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 didn’t 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 didn’t. 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, it’s 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 didn’t 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. It’s 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 didn’t 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 didn’t 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, That’s how I got here in the high mountains of the Uintas.

Part IV

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 didn’t even make a fuss about our pets (2 dogs and 2 cats) even though they didn’t allow them.

Well the truck wasn’t 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 don’t 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 couldn’t 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 didn’t want anyone to know how bad I was really feeling. I didn’t 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 wouldn’t 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 didn’t 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 didn’t 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. He’s 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 working fine.

Well the kids are now back in school, the wife has told them (the school) that I am sick. She explained that she didn’t 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 else’s 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 other kids.

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 didn’t 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 wasn’t 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.

It’s 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 at night.

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 agree with
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 don’t 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.

Part IV

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 battle.

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 2 weeks.

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.

Fortunately for 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.

Surprisingly they 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 that sick…….. 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 it again!

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 Me.

 

Copyright © 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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    Page last updated: March 7, 2003


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