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Tom Chatterton's

Hepatitis
C
Ordeal & Continuing Medical Mysteries Odyssey

UPDATED: November 16, 2008 05:20 PM
 

Today 4 million people in the United States,
and 100 million people worldwide have Hepatitis-C..
.


Do You?


There is currently no cure for Hepatitis-C, a life threatening liver disease.
 

    

    I was infected with both the Hepatitis-C and B virus back in 1970. Three decades ago. That's my best guess anyhow, and it's a pretty good one. I was only 15 years old then, and all your decisions aren't always the wisest ones at that age. Mine especially so. I had some pretty wild times back then, and had a lot of fun. But as usual, you have to pay for all goofing off. I paid quite a lot back then, a short stint with the Ohio Youth Commission, and not having the usual teenage events like proms and graduation, etc. And now, 28 years later, it seems that fate has decided that it wasn't done making me pay for my wild times. Now it was really going to kick me in the ass for those decisions. Oh well..

   This HCV virus has been trying, slowly and quietly, to destroy my liver and end my life all these years and I wasn't even aware of it. I had been in the transportation business for many years before I decided to go back to school and get a degree in an art field like I had planned back in the '70's. But, in September of '96, while  I was attempting to sell some plasma for book money, I was rudely informed I had something called "Hepatitis-C" and given the bum's rush the door.

They actually yelled to me "...and don't you come back!" They acted like I was trying to pull a fast one over on them or something. Hell, I didn't even know what hepatitis-c was. The plasma place was pissed because I'd already been paid for two quarts of plasma before their test came back telling them that I was HCV +. The nurse was sure that I'd known about my infection and had ripped them off!

I had always thought that hepatitis was a bug that you'd get from a cook who hadn't washed his hands after......well...you know....a yucky hygiene thing.

Nope I found out, that's Hepatitis "A", a different thing.

I also remembered hearing about a hepatitis that could be passed by sex. Homosexual sex. I read something about it being used as a marker for HIV back in the 80's and before they'd made a test for it. Back when the medical community called HIV the "Gay Cancer."

Nope, wrong again...that one's called Hepatitis "B".

So what in the heck _did_ I have??

 
I found out that all the word "Hepatitis" simply means that a person has an "inflamed liver." Hepatitis is caused by anything that inflames the liver. Drug reactions, viruses, booze and all sorts of other things. Hepatitis was not the name of the virus but the condition. Hepatitis-C is blood borne virus and likes to travel that way. Blood transfusions mainly. Also needles, tattooing, shavers, ear-piercing, stuff like that. So I can't really say positively how the hell I picked up this stuff. It's supposed to be pretty hard to get.

Once a doctor told me that my liver was "damaged and inflamed like a skinned knee." Funny he should say that, because that's exactly how my liver feels. I was really lucky not to have more damage or scarring. Most people who have had the virus for 30 years are not so fortunate.

The doctors shocked me further by telling me that I had also had Hepatitis-B at some time in the past. My teenaged immune system was able to wipe that out alone and was pretty successful over the years at keeping the HCV at bay. I've never been tested or told what subtype of virus I have, but a lifelong friend who caught it the same time that I did said our doctor thought it to be a weaker variant that was circulating back then.

Luckily, at the time I had a very good personal physician and she sent me to a gastroenterology specialist (guts doctor). Before I knew what had hit me the specialist, Dr. Sundarum sent me to be greased up and have my liver pinged with sonar, twice jammed a garden hose down my mouth to look in my stomach and things, had me stabbed in the liver with a whaling harpoon, along with a few other tests.

This was just a little more serious than I had first realized. I thought that I'd be told no alcohol and that my eyes would turn yellow. The last thing I expected to hear was..."you will probably die miserably in a hospital bed waiting on a liver that will never come."

That statement certainly got my attention.

Then the doctor told me that I had to give myself shots 3 times a week for 6 months. And maybe, just maybe, I could hold off the progression of the disease a little while. This virus is very slow acting. The thinking is to hold it off and you'll die from something else first. But no one had bothered to tell me about the side effects of Alpha-Interferon injections.

All this time I wasn't really sure what the hell was going on inside me. I went to the public library. Nothing. Absolutely nothing. I found a little on "non-a/non-b hepatitis", the name they gave HCV before it was "officially" discovered in 1989, and tests for it developed in 1990.

I'd heard about the Internet having good medical info, but a computer was a little out of my reach money wise. So I picked up a new WebTV terminal that had just come out and here I am. With it I was able to find all of the info I needed. And I found that a whole bunch of people are going through the same misery that I am and looking for support on-line.

More disturbing, I also found out that a whole slew of people are a hell of a lot worse off than I am, and that hurts me a lot more than any shots ever will.

My PCR viral load count when I started the treatment was 51,000x1000.
I'm not really sure how bad that is but I have heard of much worse.

Well, 6 months of interferon turned into 9, which turned into 12. I am now on month 12. My PCR at 6 months was non-detectable. Same at 9. I'm one of the lucky few from what I understand. My enzyme levels never quite came all the way down to where they are supposed to be, but damn close.

There are many out there who found out too late, or have much more liver damage and scarring than I do. Unfortunately for them, and people with other diseases there is a severe shortage of organs for transplants.

PLEASE consider becoming an organ donor
 and make sure that your family, or whomever,
knows about your decision!

UPDATES  UPDATES  UPDATES   UPDATES   UPDATES

                                                                  
I thought that after I'd finished my 13 months of torture, I could get back on with my life. Not so.

My real odyssey had just begun...

Feb. 26, 1998: I've injected myself with my last dose of interferon! For the rest of my life I hope. Today is the first day in over a year I have felt somewhat normal and without pain. Time to recuperate now and relax a little. This has been an experience I'd really not like to repeat again. ...Ever. I won't be able to find out whether that will be the case until the fall. Right now I'm just going to try and live a normal life and not try and think about it for a bit. I'd also like to thank the friends that I've made on the Internet this year. It helped a lot.
Aug. 10, 1998: My PCR viral count is still non-detectable.
I've been off interferon for four months now, so it seems to be working.
Dec. 01, 1998: My PCR viral count is *still negative* after 8 months off interferon therapy. I've got a good chance of beating this. HCV will usually come back right after stopping the interferon. Mine hasn't. I'm amazed, to say the least.
Feb. 17, 1999: I have made it almost a full year off of interferon without the virus returning. My results are still at a non-detectable level. It's a relief that I've made it so far without any recurrence. So many people do not have any response at all.
May 20, 1999: Today I was informed that my viral count was still non-detectable. This would have been better news if the doctor had not also told me I have an ulcer. O well.....
Aug. 24, 1999: I have just received the results from the latest viral count PCR test. I'm still negative for the HCV virus. Still have an ulcer, though. Arrg!
March 9, 2000: The result of my latest PCR viral count is still negative.
This makes two full years off of interferon without a relapse. An ERCP my doctor performed two weeks ago showed that my gizzards or whatever it is they look at are apparently normal. The reason they wanted to do the ERCP was to try and find out why I'm having so much depression, fatigue, liver pain.
July 20, 2000: My run of good luck continues liver-wise. Still negative.
  ...Still feel like crap, though.
Sept 1, 2000:  Well they finally figured out why I still feel like I'm shooting up Intron A interferon. Why I'm still in so much pain despite stopping interferon 2½ damn years ago. The Interferon treatment has caused me to be stricken with Chronic Fatigue Syndrome. (CFS) A very poorly named disease. It's also known as Chronic Fatigue Immune Disorder Syndrome. (CFIDS) Fatigue is just a small part of it. The pain is driving me up a wall. Oh well...Like the doctor said, if the Intron-A caused it, at least it got rid of the virus. I'd be really pissed right now if it hadn't.
March 27, 2001: It's been a long time since I've updated this page. At the end of September I had an operation to stop my esophageal reflux. Went just fine. One less disease to worry about. The reflux was giving me Barrett's Syndrome. But my health continued and still continues to spiral downward. I should have known that kicking HCV's ass was way to simple. It's having the last laugh I suppose. The CFIDS has been joined buy an out of control gall bladder. And something's screwy with my adrenal gland.

 
 Of course none of the doctors can agree on why or what I have. Rheumatoid arthritis is now being tossed about. They found out that all my gall bladder ducts were working perfectly, but from my reported symptoms my Internist sent me back to the surgeon to see if he wanted to yank my gallbladder out. "Sure," he said. But my gastro wanted more tests. I passed an ERCP and a bunch of other tests that required injecting me with all sorts of liquids that came in lead bottles. I stood in my dark bathroom one night and swear I saw my teeth glowing in the mirror. Since I passed the damn tests I can't get this f##king thing ripped out of me. The pain from the CFIDS, the fatigue, the gall bladder pain and associated gall bladder symptoms keep me practically bedridden.
March 29, 2001: I saw my Internist yesterday. Both he and I are stumped. I go in for an MRI of my liver and stuff soon for a good look. Something's screwed up big-time down there, and I want it fixed. I'm really beginning to worry about it. O well...On the happy side  --- My doctor has given me something to deal with this horrific pain!! I almost felt normal for the first time in 4 1/2 years today. I've been sick so long I don't remember how to act like a normal human.
April 26, 2001: My gastroenterologist, Dr. Sundaram, has let me know that he now has no objections to the removal of my gall bladder! I can't believe that I'm happy about getting sliced open and part of my chitlins being yanked out. Stay tuned...
SEPTEMBER 11, 2001: Well, the gallbladder came out June 21st. What a relief. I could tell it was gone in the recovery room. That squiggling pain in my side was GONE! Five damn years of that thing driving me crazy. They cut it open and found that it was infected and all scarred up from years of the disease. I had a great time at the hospital getting it removed. I had so much fun that its too bad I can't go and get something removed once a month. The put me in the new Laparoscopy Suite that is all made up in Scarlet & Gray (OSU's colors) -- the operating table was right in the center of a giant "O" inlaid in the tile floor. I suppose that's so that St. Woody can watch over you during the procedure.
October 17, 2002: It's been a long and frustrating year since I last updated this page. The Interferon that saved my life has left me with Chronic Fatigue Syndrome, Fibromyalgia, and Adrenal Insufficiency. The type of Interferon that I was treated with was called Intron-A. Nasty stuff. Now it appears as if the treatment was worse than the disease. The fatigue is actually worse than the constant pain. I can take opiates for the pain, but medical science can't do anything for this maddening fatigue. I'm a virtual shut-in now, and it's taking it's toll on my sanity.
April 2, 2003: So much for having Chronic fatigue Syndrome. An overlooked test, taken quite a while ago, was found that shows that I specifically have what is known as Adrenal Insufficiency. Somehow, the Interferon screwed up my Adrenal glands. Oh happy day. So now I have to wear an Medic-Alert bracelet, and start carrying a special emergency injection device around with me - in case of a dangerous stress crisis. They had me stop the cortisone and switch to Prednisone, a lower dose and supposedly safer steroid. I already feel less fatigued. But I still feel crappy, and have either Fibromyalgia or HCV and/or Interferon induced Neuropathy. I found a new study linking HCV and a heightened immune response clogging small blood vessels in the brain at the Hepatitis Neighborhood, causing nerves to feel pain constantly. I favor that description over Fibromyalgia muscle & joint pain. Who knows. I guess now I need to create an Adrenal gland web page.
May 28, 2009: Yes, it's been three years since I've updated this. Most of the time was spent in bed sick as a proverbial dog. Things have been improving however, since I now know why I'm in so much goddamn pain, and I'm finally getting treated properly for it. I found out that I don't have Fibromyalgia or Chronic Fatigue Syndrome. I have Adrenal Insufficiency and neuropathic pain from various sources. I have pain from the Intron-A, and I've had doctors tell me that the Intron-A did something to my nerves. Also my neck, shoulder & lower spine are in really bad shape. I knew that my right shoulder was in terrible condition. I'd injured it many times when I was delivering freight with a semi. My shoulder's been diagnosed with a SLAP lesion, laxity and tendonitis.

The condition of my neck caught me off guard, though. I have degeneration of my cervical intervertebral discs and my lumbar or lumbosacral intervertebral discs. and most alarming something called Cervical Spinal Stenosis. My spinal cord is squashed! My neck may be broken, and I have to go see an orthopedic surgeon. It goes almost without saying that I have severe arthritis in all of those areas. I also found out this spring that I have Type-2 Diabetes. Why? Because I have to take hydrocortisone for my Adrenal Insufficiency. Taking hydrocortisone increases the amount of glucose in your blood. If I quit taking it, it's back to laying in bed the rest of my life. I promise not to wait three years to update this page. I've gotten quite a few emails chiding me about this. I also have my 10 year "Free from HCV" anniversary coming up before long.
December 2nd 2007 - Yes, yes, I know that I'm way overdue! There will be more coming to this spot soon - I promise!

I'm working on it!

 Thanks for reading...Tom.

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Last Updated: November 16, 2008 05:20 PM

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