Monday, April 12, 2010

Thanks for the quote uncledude

Dost thou love life?
Then do not squander time,
for that is the stuff life is made of.

Benjamin Franklin

"thanks Ben, i wish ya told me 5 years ago, but i hear ya now"


Kev's Story - Thank you for allowing me to blog it. You're one of my hero's

For many years of my life I'd been telling myself and others that I didn't think I'd live past the age of forty. I don't really know why, just some sort of strange premonition I guess. But in July of 1994, in my fortieth year, my old life did indeed pass away and I embarked on a brand-new journey that through illness, has brought me to a whole new realization of what life is about and why we were put here in the first place.

My wife and I were living in Tennessee at the time, and I'd recently returned to work for a buddy of mine in Mount Juliet, just outside of Nashville. We'd moved to the area from Southern California in 1988 because of my music and songwriting which I'd worked most of my life pursuing professionally In order to pay the bills though, my day job kept me busy working in a local cabinet shop, a type of work I've always loved, but second only to my love of music.

I'd been noticing that the new cabinets we were building took a lot more energy out of me than I'd been used to, but figured I was just out of shape and needed to get used to the new work. Actually I thought I was adapting pretty well though for somebody forty years old and still felt strong in spite of increasing problems with unusual fatigue. I'd been feeling a lot of strange aches and pains for quite some time but since I was still able to keep up with the younger guys, playing music in the clubs and partying on the weekends, I figured it was just my age showing. No problem for me though, when I felt crappy, I'd just drink a beer or two, ease the discomfort, somewhat, then I'd be fine. . . . .or so I thought .

I'd been gaining a lot of weight at the time, oh I didn't really think it was that much . . . but I'd usually avoid the scales because that would have brought out that little nagging voice telling me what I really knew deep down inside: I needed to stop drinking. Being raised as a Christian, I'd chosen to rebel in a few areas of my life and go against what my heart knew was really right for me. Beer was always my drink of choice and because it was "only beer" and I could always rationalize away any interference it may have caused in my life. I know now that drinking definitely did keep me from living my life to the fullest and I'd known for a lot of years that it really wasn't right for me to continue to imbibe, but that didn't stop me. I think that it might have had something to do with being brought up to be a good little Christian kid whose Dad was a well-respected elder in the church. For whatever reason though, I grew up with a very strong desire to taste the very side of life that I'd been taught to avoid. Once I was old enough to see that I couldn't believe everything I heard or read, I began to question everything I'd learned and decided to find out about life for myself.

As the disease progressed quietly inside of my liver, I continued to gain weight and eventually noticed a strange sensation in my belly; something like an abdominal muscle that I couldn't tighten up, and this "something" felt like it would move a split second behind the rest of my body when I turned quickly. A tummy full of water is a familiar feeling but this was in the lower part of the abdomen and it scared me. Deep down I knew that something wasn't right, but I guess my tendency not to worry about stuff like that, along with my silent fear of bad news, kept me from wanting to see a doctor about it.

My stomach finally bloated so badly that I looked "ten months pregnant" (my wife's words) and was very miserable. I tried laxatives, thinking I might just need to clean out a bit, but to no avail. It was only after my wife Patty showed up on the jobsite unannounced one afternoon, and spotted me off to the side, clutching my abdomen in pain that she was able to convince me that I needed to see a doctor. I thank the Lord for that woman and especially for giving her the intuition to put her foot down and insist that I "bite the bullet" and see a doctor.
It wasn't long before I found myself diagnosed with chronic hepatitis C (CHC) which had progressed to end-stage liver disease (ESLD - ie. decompensated cirrhosis). The strange sensation and bloating that I'd been experiencing was caused from an increasing ascites problem in my lower abdomen (waste fluid buildup): a condition which is common with those that are close to needing a new liver. Too many years of working around solvents and my former affinity for certain alcoholic beverages had progressed the disease to the point where I was in really bad shape by the time we learned what was wrong.

To make a long story short, I found myself in the care of Vanderbilt University Medical Center where Dr. Hunter and the transplant team began evaluating me for what they then believed would be my need for liver transplantation before another year had passed. I was considered too progressed and not a good candidate for interferon treatment, and not a good risk for liver biopsy because of potential bleeding. This whole time period seemed almost surreal to me . . . almost like an extended dream. It was as if my doctor was talking about someone else and I was just leading this person through the motions. It's common for patients to go into a type of denial when faced with unpleasant truths about their health, and I guess my case of "comfortable denial" was necessary to help me get through this period of time.

There's something about being told, "there's nothing else the doctors can do" that makes a person realize pretty quickly that the doors have all slammed shut and the only opening is the window to heaven. I got down on my knees and decided that I was ready to put it all in the Lords hands for real this time. My daily beer drinking had been a part of my life for so long that I'd come to the point of not really knowing for sure how much was habit and how much might be a physical need. Either way I knew I'd need help changing my lifestyle, and the only thing I knew to do was to ask for the Lord's intervention. Looking back now, I know that one of the main reasons that I'd been drinking so much more in the last days was because I was medicating myself from symptoms I was trying to ignore. I definitely started to drink like an alcoholic but by the sheer grace of God, my body never became chemically addicted to the poison and I never had any problem stopping it immediately once I was diagnosed.
The Lord completely took away my desire for alcohol when I got serious that afternoon in 1994. Although I know this sounds far too good to be true, God did indeed work a miracle that day which saved my life. Like never before, I'd poured my heart out in prayer about my concern for remaining abstinent from drinking. I prayed for guidance and asked the Lord to show us the path to my healing. I asked for forgiveness of my past and found that for the first time in my life I could truthfully say I was willing to completely let go of everything I'd known and wanted for myself, and I asked God to guide me down whatever path he would choose for me. Now there were no thunder bolts or lightening and no audible voices from heaven, but after that prayer I felt a peace and presence of spirit that stayed with me for the duration of this most scary time.

Back then there wasn't a lot of information available on hepatitis C, especially in Tennessee, and after scouring the local libraries and bookstores. my wife Patty and I traveled to California to visit my folks and to some of the facilities there, hoping to find some better answers about this invader that threatened my life. Because so little about the disease was known at the time, we basically searched for natural things that could help me to regenerate my liver and protect it from further attack. It can be a daunting task to separate fact from fiction with the multitude of bad information that exists, but we made it a policy to double and triple check all of our information to confirm truths about the safety of different herbs for the liver and my particular condition.

It wasn't long before my folks put me in touch with Dr. Tom Smith from the International Clinic of Biological Regeneration: an organization that specializes in cellular therapy which I had hoped might be able to help me speed up liver healing and avoid that liver transplant. Although we eventually decided that this kind of treatment would probably not be the answer for my particular situation, the good doctor gave me the beginnings of the regimen that I still use today. Thanks to his tips, and the right combinations of healing herbs found over time, we did start to see a light at the end of the tunnel. Patty and I spend hours and hours learning from such tremendously helpful books as those written by Dr. Julian Whitaker and Dr. Michael T. Murray. Because of this and the continuous prayer from those that care about me, I am pleased to say that I am no longer considered in need of liver transplantation, and am "holding my own. The virus still remains in my body and I must maintain strict dedication to my daily regimen in order to keep the disease under control, but I'm thrilled to be alive with my own liver still intact and able to share my story with anyone who has an interest.
"Many traditional doctors still mistakenly tell patients that herbal medicine doesn't work and cannot help control hepatitis C. If this was really true then my own continued existence would have to be a figment of a whole host of collective imagination!"
Kev Krueger
November, 2002
" Still controlling hep C WITHOUT interferon!"

February, 2004
It's been a long hard road since my diagnosis in 1994, but without a strong faith in God, I doubt seriously that I'd be here to write this. Being the male breadwinner of the family, it wasn't easy getting used to the change of roles and having to rely on someone else to do things for me. The feelings of worthlessness at times, could be overwhelming. The small wood shop that I'd been working for hadn't been able to offer health insurance and since Patty was between jobs at the time, we suddenly had no income, no health insurance, and faced the prospect of my needing a lifesaving procedure that not even selling our home could pay for. My doctor painted a pretty scary picture for Patty when describing what could possibly happen to me, and being the wonderful wife that she is, Patty rarely left my side for the first year after my diagnosis. This meant we had no income coming in and we knew we faced losing our home and much of what we owned. Patty was prepared for that though, and with the grace that only this very special lady could demonstrate, she proceeded to make arrangements to put our home on the market and began selling off possessions at yard sales.

This whole period of time seemed like a continuous need to reach out to God for help, and although it was always a struggle, the Lord never failed us. We didn't have much choice but to file for Medicaid and Social Security Disability coverage, and we soon found out that because this disease was new to the system, it would be an uphill battle all the way. Hepatitis C was not on the books for anything at this point, and it took sheer persistence on the part of my wife and a lot of teaching about the disease itself along the way before we were able to get my case approved. Patty was always the pillar through all of this and I thank the Lord constantly for blessing my life with hers. Only once did she ever let me see her break down and that was the first week of my diagnosis. I know that she must have needed to cry out a lot, especially during those early days, but she knew that I needed her strength and her fortitude wouldn't allow it to happen, at least not that I knew about. Sometimes I think it was harder on her in those days than it was on me because I had her to pick me up when I needed it, but I wasn't strong enough to do the same for her. Patty had nobody to talk to that understood the disease, and no shoulder to cry on in times of desperation, but that never stopped her from pressing forward and learning anything that she could that might help me to get better.

I'd been restricted to a diet of 2000 mg of sodium per day and Patty had to practically learn how to cook all over again because most of what I ate had to be made from scratch. Even through all of the uncertainty and stress that was suddenly thrust on our lives, my darling wife hung in there like a trooper. She jumped in with both feet and successfully fought for my Social Security disability, never ever showing outwardly that she was still in danger of losing her husband. Patty is my rock, and as long as I have her, I could lose everything and still have it all. It was difficult letting go and one of the hardest things I had to learn was not to worry about finances. I used to get so worked up about it in the beginning that I'd be physically sick when a bill would arrive that we couldn't immediately pay. I guess this just goes to show that faith is a process of continual growth and no matter how much we think we have, we've still got a long way to go. God is faithful though and we did survive. Patty was able to pick up part time work here and there as I began to improve, and the loving parents that God blessed me with have been able to help us along the way while we work our way out of the pit that we found ourselves in.

Entering the Dragon's Den by Trudy

I was diagnosed in June 2007 when attempting to donate blood. Formal Dr. diagnosis in July 2008. Type 2 stage 2 (liver) as of Oct 2009. Can't start treatment yet. Most likely contracted virus in 1954.
For the past 10 years before diagnosis, I would have random unexplained but debilitating periods of time with extreme pain and fatigue... MANY tests & Docs and no diagnosis..(Fibromyalgia, I'm sure now- related to HCV.)

In hindsight, I started experiencing mood changes and gradual fatigue (blamed each on a stressful job) about a year before diagnosis. Also in last 6 months, the symptoms became very noticeable. My friends and I were concerned about mental changes... Was it some precursor to early Alzheimer’s?? (Brain fog). My friends and I spoke of how I seemed to just keep "catching this same bug" over & over...had difficulty eating...painful stomach, occasional nausea (for about 18 months before) then the extreme, unending fatigue set in...I was really hard on myself. Thought I was “getting lazy/ unmotivated".

Even with all of this & a nagging subconscious knowledge that something wasn't right, when the blood bank nurse told me the test results, I totally denied that I wasn't 100% healthy... That it couldn't be right because I wasn't sick!

Just my naive entrance into the Dragon's Den...

I have not been able to start treatment; although three Hepatologists have said I need it NOW. I have the extreme pain again, worst ever. All over, widespread, undiagnosised still. Hepatologists won't start treatment till this is better... Just send me out into the world to find & fix it first!! So I am now in search for a doc who will consider the diagnosis of Fibromyalgia...hope to start treatment mid-summer. Don't want to do treatment; just want it over...hopefully back to life outside the Dragon's Den and with Fibromyalgia under control. Can always hope....