Hepatitis C
My Journey

I found the poem just read at a wonderfully rich site belonging to Prof. Dr. med. J. Reichen- The liver - Function and its diseases.  I happen to be looking at a lot of liver disease related sites lately - I have been diagnosed as having the Hepatitis C virus (HCV).

Let's start on a light note - click on this link to download The Liverdance Screen Saver!  After you d/l just double-click on the file to install - it is hilarious, and so apropos to those uf us fighting the battle... :)  I have scanned this file with the latest McAfee virusscan, and it is clean. ENJOY!  

To say that this took me somewhat by surprise would be an understatement.  They couldn't be talking about ME!!!! (could they?).  This page is, for me, a way of dealing with the disease and all of its multi-faceted implications.  I hope that by writing this it is not only therapeutic for me but also provides support, understanding and kindredship (if that's a word.. :) to others who, like myself, are struggling to come to grips with this looming thunderstorm that is HCV within them. An estimated 2.7 million Americans have this disease, although most of them do not know it.  That is the cruel irony of the virus - it is asymptomatic generally until it does something dramatic, like cause liver failure, liver cancer, or cirrhosis.  When those things happen, the only recourse is transplantation, or death.  I don't want to get to that point, so that is why I opted for the Interferon treatments.  

I actually found out that I had this virus some time ago.  I was reluctant then to try to do anything about it - I just wasn't ready.  Time passed, and this January I made a pact with myself that I would get my medical house in order.  I don't have any other medical problems that I know of outside of the HCV.  My BP is slightly high, but whether that's "treatable" is borderline.  

In February, or so I went back to the GI Doctor (henceforth called G-man.. hehe), Dr. John Chobanian, to see what we could do about the virus within me.  He is a great guy - very personable and knowledgeable - who works at the Mount Auburn Hospital (a Harvard teaching hospital) in Cambridge MA, US.  We did a BUNCH of tests, including a liver biopsy, to determine a baseline for where we were at.  The tests showed that my LFTs were a little elevated, I had active HCV, but there was no fibrosis or cirrhosis in the liver.. This was great news!  My 'viral load' is 170,000.  This is very low compared to some people with advanced chronic HCV (they can get up to 8,000,000)   I also found out that I have genotype 2b of the virus.  This is wonderful news because it means that I only have to take the drugs for 6 months instead of 1 year (or more)!  Also, the eradication rate (they will not call it a 'cure' yet) is double for people with the 1b strain.  Since only about 1 in 10 people in the US (it is much more common in Europe) have the 2b strain, I consider that I was very lucky.

We talked for quite some time about what the treatment would be (Rebatron combination therapy) and what it would be like to go through it.  It was not a very pleasant picture at all.  There are so many 'sides' (side effects) that have been reported, it makes you think that all of them WILL happen to you. This is not really the case however.  It is miserable stuff, the Interferon, but my side effects have been limited mostly to extreme fatigue and some flu symptoms. The fatigue is debilitating.  I have a responsible position in the IT Department of an Insurance company, and the last thing I need is to be totally exhausted all the time - but that's what I got.  I guess the FIRST thing I need is to get myself cured... I believe that this therapy will work and I will be one of the 40/100 that has lasting eradication of the virus. :))

[Top] Well, I have been on the medication for 168 days, 17 hours, 21 minutes and  54 seconds... hehe  I wrote a program that gives a full update on the time remaining, the time completed, the percent done and the shots remaining.  It is pretty neat, I think. (at right is a screen shot)  You can download it here if you want to see it.. :)   I was thinking about making a generic one that you could put in your own finishing date.. let me know via e-mail if you would be interested in that.  Oh, don't worry about viruses (of the computer type.. hehe) with this file.. I wrote the thing and I can tell you that there are none..  I have enough virus on my own without giving one to anyone else.. of ANY type.  :)
UPDATE:I made a web-based countdown timer instead so that you don't have to download and install a program on your PC. 

I have to do a little traveling this week (and with my job, generally).  It is an inconvenience to have to ensure that the meds are refrigerated at all times.  There are MANY inconveniences, however.  That is a somewhat minor one.  It is funny to me that once I was committed to the treatment plan, that my body actually looks forward to my next shot, for some strange reason.  I guess that is the wonder of the human body...  that it is infinitely adaptable.  on how I am doing now (7/17/2000).

If you are suffering for this virus, there are some things you can do to help make things a little more bearable.  I think that the act of getting informed and educated about this malady  is healing in itself.  Try to learn all you can about the disease.  Also, try to hook up with others who are fighting this dragon (this page is an effort of mine to do that).  Shering-Plough (the makers of the drugs) have a program that they fund called Be In Charge that  has a great built in support system.  Yes, I know, you would say that their motivation is to keep people from going off the drugs (the therapy costs $350/week and S-P makes a lot of profit on it), but the fact remains that no matter what the motivation, it is a good program.  They supply you with various materials, all  free, and there are nurses to consult with (toll free number) at all times who are experts in dealing with the side effects of Interferon.  I find that just knowing they are out there makes me feel better, even if I don't call them.  

An about a new treatment.

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