Hepatitis C
My Journey

Update and Comments
(just close this window to return to my HCV page)

[9/4/99] [9/10/99] [10/08/99] [11/02/99] [11/24/99]  [12/10/99]
 [12/21/99] [1/6/00] [3/17/00] [6/29/00] [7/17/00]

[Top]  9/4/99 - I thought about keeping a daily journal, but decided that this would be overkill as things don't change that dramatically from day to day. 

     Well, I have to say that I have now finished with almost 60 days of the treatment (59 days 15 hours 17 minutes and 27 seconds, to be exact.. LOL) and I am feeling ok.  I am still exhausted every single day (worse on PSDs - post-shot days).  I have headaches of varying intensity almost every day.  Overall, though, I am hanging in there.  I am generally not getting as sick as I was.  It is rare that I will get a fever or chills, now.  It seems as though if I don't get as much rest as I should that I feel much worse.

    It has been my goal through this to do anything possible to minimize the impact that my treatment has on my work.  So far it has worked out very well.  I have missed very little work, even in the early days of treatment.  That is not to say that I always feel good there - I don't.  I am always there, though, and trying to do my best.  You will find that you start out the week (weak?  hehe) with about 50% of the energy that you normally have.  This all gets expended, and THEN some, during the work week.  When Friday afternoon rolls around, you are left in a negative energy situation.  I find that most weekends are spent trying to rest and build energy for the next week.  It is not the best existence, but at least it is predictable now.

    I have found that, as instructed, it is really important to drink the amount of water recommended.  Depending on who you listen to, it should be a minimum of 10 or 16 glasses (8 oz.) per day.  This is a lot!  Most days I am doing about 20.  It means that you can never be far from a bathroom and that you must plan any driving trips carefully.  Apart from being physiologically good, it is also psychologically somehow good as you know you are doing the right thing.  Of course, you must also abstain from alcohol.  This is totally logical in that alcohol is a liver irritant and dehydrator - it CAN'T do you any good.  On the couple of times that I have had alcohol since I started, I found that the drugs had MUCH greater "sides", too. 

[Top]  9/10/99 - Well, I am just home from 3 days in the hospital - this saga has taken another turn..  Monday, I started to notice chest pains.  These continued into Tuesday.  Ordinarily, I wouldn't have given it much thought.  Because of the warnings I have read about Ribavirin exacerbating or even causing heart problems, I thought it would be prudent to report these symptoms to my doctor.  

    I called the G-man, and got a return call from his associate (who was on call that night).  He advised that I should call my primary physician (this is the first of many run-arounds I went through).  I did call her and we discussed what was happening.  We agreed that the most prudent thing for me to do was to go the hospital so I could be checked out.  

    I got a lot of attention when I arrived (I guess 'chest pains' is the magic word around there).  They suggested (actually I expected this) that I be admitted for further observation and tests.  When they were convinced that nothing really overt was happening, they knew it was safe to ignore me.  LOL  I stayed in that ER stretcher for 8 hours - a Hindu bed of nails would have been only slightly less comfortable - before they took me up to my room at 4 AM.  Once there, those folks had to do their thing (I must have related my story 20 times that night).  I was finally allowed to sleep at 6 AM, but only till 7 when they had to take vitals and blood and stuff.  JEEZ - Why is it that you feel worse once you are in the hospital than you did before?!?!?!?  This is one of life's unanswered burning questions.. LOL

    For the next 3 days I was poked, stuck, prodded, pushed, pulled and stuck some more. I must have been stuck 30 times in those 3 days.  I had monitor and EKG tabs stuck all over me (I am now almost hairless from pulling them all off.. hehe).  On Wednesday I was to have a heart stress test and scan, but they couldn't schedule it so I had to languish till Thursday (I thought) to have that critical one done.  When Thursday rolled around, the nurse told me at 5:30 AM "No caffeine" (apparently it interferes with the test).  My breakfast came at 8, and on the tray was a cup of decaf coffee.  I had requested coffee, and they had written by hand next to it "decaf".  Naturally I assumed that this was ok to drink.  But nooooooooooooooooooooooooooo!!!  It wasn't.  They would not let me take the test, and I had to wait till Friday to have it done.  I was pretty upset, as was my doctor.  

    I am home now and the test results are all good!  My heart is fine, and will be for a long time, they say.   :)))))  I'm real happy about that, but not so happy about rotting in the hospital for 3 days while they got their act together.  

[Top]  10/08/99 - Hi again, all.  Well, I have good and bad news to report this time.  :)(  The good news is that I am halfway through as of this past Monday!!!   YEA!A!A!A!A!A!A!A!A!A!A!A!A!AA!   The bad news is that I am not feeling quite so good as I was.  For some reason, since I got back from the hospital the meds have not treated me quite as good.  This is not to say that it has become intolerable - it hasn't.  But it definitely has gotten worse.  I hope this is temporary (well.. I do know it is temporary for, at the most, 87 days, 5 hours, 48 minutes, and 29 seconds.. LOL  I am really hoping for a return to "normalcy" a lot sooner than that.  

    I got a cold or flu bug this week  that, added to the med's effect, knocked me for a loop.  This is part of the reason why I am complaining in today's entry - I am still miserable from that combined negative synergy. On top of that it has been really crushing at work - I have been (with extreme difficulty) been working 12 hour days this week.  BUTTTTTTTTT ---I am feeling a little better today!!!!! [witness that I am writing this]  I'm sooooo glad that the weekend is approaching - only today to get through and I crash for 2 days - I really need it at this point.   Well - gotta 'git' to work now - oh, boy, oh, joy.  I do love my job - but these are trying times.  :)  Take care.....

[Top]  11/02/99 - Hi again from HCV-land! Well, as you know I don't update this page unless I have something new to add or there is a change to report. There have not been too many such changes lately, but a few. You can never predict what this combo will throw at you next. In fact there are some sides that seem to hold off until the moment that you say to yourself.. "I can handle this - no problem". To say that is to ask for trouble. LOL 

    Lately, in the past month, my fatigue has been somewhat worse, my hair is starting (just starting, mind you) to show up more in the shower drain instead of on my head, and I have been getting severe headaches lately, lasting for days. I did have almost constant headaches at the outset of treatment, but these are quite a bit more intense. I might even call the doctor about them. My mouth has been breaking out in cold and canchre sores a lot in the past month or so.. It seems as soon as one batch fades, another is on the way.  It is particularly hard for me because I love spicy food - I LIVE on Tabasco sauce (hence - BascoBill). Since my mouth is so sensitive, I have to scale back on the level of spice that I eat.  I cannot wait till I can get back to my "normal" intake again.. :)

  Another annoying development recently is that my back is constantly itchy. I don't know if it is the HCV or the meds or both, but WHY couldn't it have been my stomach that itched?!?!??! :)) Jeez.. I need a designated scratcher. As someone one said... "The severity of the itch is inversely proportional to the ability to reach it." You will see me wiggling in my chair or rubbing my back against a doorframe to quiet it. This works, momentarily. 
  
  Vision is another problem of late.... I have experienced increased blurriness and 'dry eye'. I used to read the screen with my glasses on and take them off for reading paper (I am nearsighted).  Now, I see the screen better, too, without them.  That is not a bad, thing... it keeps me from constantly taking them off and putting them on.. but it is different.  I am gonna get my eyes checked after I am done with the meds to see where I am then.

    On the bright side of things, though, I only have 61 days to go!!!!!!!
 YEA!A!A!A!A!A!A!A!A!A!AA!A! Hope you are doing great , too

[Top]  11/24/99 ----- 

Tomorrow is the big day.. :)  I have very little appetite lately - I'll have to ration my capacity carefully.  I do have a lot of things to be thankful for.  It has been a great year, in spite of these dad blasted meds.  (by the way.... only 39 days to go!!!)  Things with the meds are seemingly more difficult, now.  It may just be that I know the end is near, and the same things just bother me more.  Anyhow, at least things are progressing and time continues marching inexorably (hey - nice word - LOL) toward the completion date.       I hope you have the greatest of Holidays and pause to reflect on the sappy sentiments that are the custom of this special day.  I say 'sappy' lovingly, by the way.  I love those thoughts and feelings, too.  We are all so busy most of the time that we take family and friends for granted and lose sight of what REALLY matters.  It is nothing to be ashamed or guilty about.  It IS great that we can take the time at least a few times a year to cherish those joys of being human.  Ok, I know.... I will get off the soapbox, now.. LOL  This was SUPPOSED to be an HCV update.  Have a great Turkey Day!

[Top] 12/10/99

Well, here we are at Christmastime again. It has been a long haul this year.  I am glad to be just about done. I was thinking about how it would be if I had to take this for a full year, like most American HCV patients.  I guess I would try to grin and bear it, and be happy that I was half-way, now.  There is not too much new to report.  Lately I have been having skin problems, namely that I am itchy as hell all the time.  I get these red, dry bumps that I want to scratch till I bleed. I suppose I could call the doctor and ask him what to do - maybe I should.  It is really maddening.   My hair has fallen out to a point where people notice it now.  There is still quite a bit there.. LOL but I have lost a fair amount too.  I hope it doesn't just all come out in one big clump one day.  :) If it doesn't, I think I won't be totally bald by the time I finish.  YAY!  I hope you have a great Holiday season, and that Santa is nice to you.. :) Here is a link to MY CHRISTMAS PAGES.. Please take a look.. :)

[Top]12/21/99

Ok.. I have some great news to report today.. I picked up my LAST refill of the combo treatment!!! I can't believe I am near the end - only 6 shots to go!  I am dancing now.. hehehe  It has been a long haul, but I am finally almost there.  Ohhhh, I will be updating this page with my test results when the come in, too.. both the 'right away' one, and the 6 month one.  I am confident that they will come back "No Virus Detectable"!!!!

[Top]1/6/00

HEYYYYYYYYY!!!!!!!!  I finished my meds on Tuesday of this week!!!  Even though it has only been 36 hours since my last Riba pills, I am feeling GREAT!!  I woke up this morning and noticed that I can now go upstairs without getting all out of breath, my dry, red, itchy skin is getting better, my hair loss has slowed, my eyesight and the related eye problems have all cleared up substantially and I HAVE ENERGY AGAIN!!  I am sure this will continue getting better for the next couple of weeks until I am totally back to 'normal'.  I had totally forgotten what it was like to feel good - I am dancing in my office now!!!  LOL  

On the downside, I called the G-man on Monday to see when I could get the test to ensure that all this actually had the desired effect. He refused to run the test for 6 months!  He said that tests run immediately on 'responders' (he considers me one) will often show 'no virus detected', but the virus shows up again in a 6 month test.  This has to do with the limit of detection of the test.  The immediate one might show nothing, but there is still a small amount there.  If there is none detected after 6 months, they consider that the virus is eradicated.  I just KNOW this will be the case with me.  It will be hard to wait the 6 months (till July), though.  Meanwhile I will be feeling great again though.  I am so happy about that!

[Top] 3/17/00

Hi again folks!  Happy St Patrick's Day!!!  I am wearing green today (and, NO, that's not the color of my teeth.. LOL).  I thought I would give you an update as some time has passed and the euphoria of finishing my meds has faded a little.  I am generally feeling great.  The only lingering problems are skin related.  My eyes still are bothering me as if I have allergies.  I have gotten some medicine from the ophthalmologist that does help.  I would be much happier if it would just clear up once and for all.  I am sure it will soon.  I came to a realization while getting back to "normal" after my course of treatment.  I lost 15 pounds while I was on the meds.  I was thinking that that was a good thing!  As it turns out,  the weight I lost was from muscle, not fat (booooooooo). Therefore my strength and stamina are less than they should be.  I am doing some exercise (which will increase a lot with the Spring yard work season) and am slowly getting back to where I was. I still have 3 months or so to wait to find out if the treatment worked.  I am confident and hopeful that I will be healed.  :)

[Top] 6/29/00

Hi to all!!!  I know it has been a while since my last update, but you would have been bored if I did.  I am  feeling great - some muscle tone (and, therefore, weight, too), stamina and energy have returned.  The meds with their related miseries seem a distant memory now.  I am almost back to feeling as good as before I started the Combo.  That is the ironic thing - that you can be feeling so good since HEPC is so asymptomatic (if it is not advanced) and then the 'cure' comes along and lays you low.  Ah, well, it is the means of necessary suffering to a good (I hope and pray) end.  This brings me right to the point of this update.  Six months have passed!!! Yesterday I had blood drawn to see whether this dragon inside me has been slain.  It is an exhilarating but anxious time for me.  It is kind of hard to describe.  It is sort of like I felt when I was 18 in 1969 and they decided to select draft inductees for the Viet Nam War by lottery.  When the day was approaching, I was really excited.  I really wanted them to get it over with and then I would know.  At the same time, I really didn't want to know.  I had heard horror stories from friends who came back.  I also had some friends that didn't come back at all. (it turned out fine - I ended up with a high number and wasn't even close to called - the only lottery I ever won.. hehe)
I truly believe and have faith that my treatment worked.  Every variable in my case is on the "more likely to be successful" side.  Yet, there is this nagging little voice inside that says "what if I still have it????".  I guess I'll cross that bridge if I come to it.  The test takes the better part of 2 weeks to do.  I'll just have to be patient.. LOL  Easier said then done.  You know that I will write an update to this page as soon as I find out.  I just hope that it is the last update that I need to write.  :)

[Top] 7/17/00

WOOOOO HOOOOOO!!!!!!!!!!!!!!!!!

I spoke to Dr Chobanian this morning, and he told me THE FIGHT IS OVER!!!! My PCR test came back and there was no virus detected!!! WOW... that was sweet music to my ears. I am dancing a jig around my computer now. It certainly makes all of the above worthwhile.  :-)  I am so elated, relieved and overjoyed all at once. He also told me that we should repeat the test in a year. He said we would mostly be doing that for fun because it is extremely rare for someone with no viral load after 6 months to have it reappear after one year. It is also highly unlikely that I could get it again as all blood is now screened.

I am so psyched that I can close this chapter in my life. I want to thank Dr. John Chobanian of the Mount Auburn Hospital publicly (or as public as this page is.. hehe, with it's minimal viewer exposure) for all of his help, guidance, teaching, support and cheering. Also, I want to thank all of you who wrote me during this time. I pray that all of your outcomes will be as happy as mine. Just remember to be as positive as you can. I believe that plays a great role both in making things easier to get through, and in the actual outcome. YOU CAN DO IT!!!!! 

Take care and HANG IN THERE - YOU CAN DO IT!!!!!!   :)

[9/4/99] [9/10/99] [10/08/99] [11/02/99] [11/24/99]  [12/10/99]
  [12/21/99] [1/6/00] [3/17/00] [6/29/00] [7/17/00]

Monday October 11, 2004