All Journal Entries Journals
Previous | Next

Still can't complain, AND True confessions, AND blood results, WK 2

Sep 10, 2011 - 11 comments

blood results

It is now 3 weeks and 4 days since I started my treatment.  I still can't complain about any side effects that merits a real complaint.  I notice getting a bit winded easier, feeling tired at times,, but I find if I just keep busy I don't notice being tired.  I notice it when I stop and sit still.  My eyes feel heavier at times, but like I said, I really have NOTHING to complain about.  The rash I had is gone and has been for about 1 1/2 weeks now.  I learned that my rash was most likely due to the Riba, and not the INCIVEK.

I don't know why we all handle these meds SO differently.  I posted once that our side effects are just about as different as our individual fingerprints.  I am blessed beyond measure that SO FAR, things are great. It doesn't seem fair and I find myself feeling guilty at times when I read about all my forum friends suffering.. I know I am only 3 1/2 weeks into this and  I do expect that I will start feeling more fatigued/ anemic any time now, based on what others have posted.  I read a post the other day from a mom that was doing great for the first 3- 4 weeks and it all came crashing down. I felt so bad for her.  I am ready for anything.....hoping for the best but preparing for the worse.
God is good, ALL of the time, even when things don't go as we would like them to.

On another note, I got my 2 week labs back, as well as the result of my LIVER FIBROSIS PANEL I had taken the day I started treatment. I really wanted to know if my liver had gotten any worse these past five years since my biopsy.  I should not even admit this but I feel like I have to get this out....The entire time I have had Hep C I have continued to drink alcohol, with the exception of 4- 5 years.  Of course, the first 20 years I did not know I had HCV.  I partied like crazy in my 20's and settled down when I got married at 33, but still had drinks on occasions.  Then, a few years after I discovered I had HCV ( I stopped drinking then) A friend and  I developed a kind of love affair with red wine, back in 1999. I was pretty much in denial of having HCV and lived my life really forgetting about it. Looking back, it was probably just convenient. As the years progressed, I realized I have a problem with alcohol.  I was never a full out drunk, but I would come home from work and the cravings for that glass of wine, were just too strong to resist. I could never have just one, it had to be at least two. Social settings, dinners  SO STUPID, but I kept thinking that my liver is fine, so this must not be affecting me.  If I went all those years of partying, and my liver still shows no signs of disease, then what difference  is one more drink going to make?  And so on , and so on...  ridiculous rationalization.  

I finally had an AHA moment in May of 2007.  I stopped drinking completely for 3  years and upped my health game.  Healthier foods, more exercise, even though I did those things already.   I felt better than I had ever felt and swore I would never go back to that lifestyle and drink again. I did not even crave it, not once.   I wanted to be healthy and drinking alcohol was NOT in my best interest. I wanted to be around to enjoy my life and my grand kids.  That was all behind me, or so I thought.

Last summer that resolve came crashing down as I was faced with an extremely stressful situation, more than i have ever faced in my life, and the wine  started again.  Once it got back in my system, that was it.  It wasn't every day, but it was far too often.  I was so ashamed of myself, but it was my dirty little secret.  Of course my husband was on my case, but I never let on it was because I could not control it. He always thought if I had one glass,, it would be okay.  He always got upset when he saw I was having more than one, So of, course I got sneaky.

Fast forward to deciding to start treatment. I knew i was  hurting myself, I just had to be.  When the third drug was approved, I had to go for it now.   I knew the dangers of drinking during treatment.  I felt confident that I would be able to NOT drink, but there was a small part of me that was not sure.  I am happy to say, that my last drink was about 1 week before I started, when I was on vacation.  I have NO desire to have a drink and I don't see where that will change.  I don't need to say how relieved I am about this. I did not start out writing this journal today with the intention of spilling my guts. It just gushed out of me. So,  this has become a true confession journal entry, but I think I really needed to get this out, for anyone that wants to read this.  I wonder if there are others out there like me.

I started writing all this to say that, despite my lack of respect for my liver and this horrible disease I have, my liver is still in great shape. I am really baffled, and it was results like these in the past, that gave me that false sense of security to keep on with the lifestyle I had.  It obviously wasn't hurting me,right?  I don't doubt that if my liver had not stayed so healthy, I would have stopped drinking the moment I saw things going downhill.
So, when I got my fibrosis panel done, I really did not know what to expect.  I would not have been surprised at all if I had come back with fibrosis, to some degree, if not cirrhosis.

So here are the results of my blood test....

My HGB came back non changed at 15.5.  It stayed the same.  Not sure what to think about that.
Platelets...99, down from 199.  ( that seems low to me)
Absolute Neutrophils ....1076   down from Dr said we have to keep an eye on that.  she doesn't want it to go under 1000.

And, the important one.....

Hepascore ....  0.49
Metavir score..... F0-F1

All I can say is that I must have a heck of a immune system or a super strong liver.  Maybe it is all the healthy foods I eat, along with exercise.   I guess we will never know.  

For anyone that may read this...I AM NOT CONDONING ALCOHOL USE for anyone with HEP C!!  I can't stress this enough.  It is wrong!!!  This is simply my story.  I had a problem and did not address it.  Some people become BIG alcoholics and some are LITTLE alcoholics, but simply, an alcoholic is an alcoholic.  It could have turned out differently and I have been really stupid all these years.  All I can say is that addictions are a strong enemy and I was too proud to think I needed help.  I AM LUCKY!

I have to be honest...if I had known that my liver was still in such good shape, I may not  have treated right now and waited to see what new drugs come out down the road. I guess I am glad I did not know , as it feels good to just get started, plus,  I would have taken the chance that my liver would get worse in the years that I would have waited.   I have had this disease for 33 years now.  On top of that, who knows if I will have health insurance in the future.  

My 4 week VL Hepitmax test will be taken at the end of next week.....I am beginning to feel the beginnings of nervous excitement over those results.
To be continued.......

Post a Comment
1717054 tn?1316712653
by elpasolady, Sep 10, 2011
Wow...this is long. Sorry.  In hingsight, I should have made this two separate entries.

Avatar universal
by screaming48, Sep 10, 2011
I think its great and it takes alot of courage to admit what you have just and learn and God has surely blessed you with very little damage even after all that... I haven't been drinking and have been taking care of myself and mine was between 1 and 2 so you never know how the disease progresses from one person to the next.. I hope that your sides continue to be manageable and that this will all be history one day for all of us....:) anne
ps I smoked for 30 years a bad addiction as well. Has been since May 4th since I layed them down and let me tell you that was HARD and I bet I could smoke a whole pack all at once if I let myself but hey, I'm done and going to be even healthier now without them..

Avatar universal
by aj7538, Sep 10, 2011
I think this was good for you to let out, better than keeping things bottled side. God is watching over you and guided you into tx. I think its great that you released all these internal feelings and now.u can let them go
As far as minimal sides, it doesnt have to turn bad, each person is different. You r going to do well. I am blessed, only 2 shots .but no sides at all.just taking it one day at a time. Good.luck to you. Aj

1711722 tn?1356487554
by beeblessed, Sep 10, 2011
We are all strangers, if you can't tell us, who can you tell?  We won't be telling your secrets to your family and friends.  Instead, we might be sharing bits and pieces that may help others cope with their own situations or that of loved ones.  I think it took tremendous courage and strength to come to your realization and journal it.  We have generational alcoholism in my family, but me, I've never been a heavy drinker, never did drugs not even weed.  And yet, here I am, the only one I know who is Hep C positive.  Yes, I will be sharing your story with the big time drinkers in my family, as you have given me a new approach to the liver discussion.  Hang in there and thank you.  Best to you and God bless you.

1652596 tn?1342011626
by belle19, Sep 10, 2011
you are a brave woman letting it all out.  don't you feel the weight off of you now?  it's all good.  i'm so happy for you.  your strength is admirable.  something for all of us to strive for.  i'm so happy for you that your sx are minimal.  i just had my 11th shot and i'm just tired a little.  i get a little whiny but my family understands.  they give me my space when i need it.  best wishes.  belle

1654058 tn?1407159066
by crossroadsec, Sep 11, 2011
Thanks for sharing ur story. I had my first glass of wine at 45. Drank several a year sine then. Spent some tine in Europe. I really enjoyed it. I didn't know I was sick. It may have sent me to stage 4 earlier. I've had to deal w guilt. We all have our areas we struggle with. Drinking was ez for me to drop. I did take up occasional smoking, especially after my marriage of 31 years broke up.
Like you, I eat nutritional and have an amazing immune system. I grateful that ur ok the forum. you're a positive influence n have such a caring nature. You're gonna kick this...
Congrats on tue labs!!! Hope u dream sweet. Xoxo Karen ;)

250701 tn?1320974765
by hondapatches, Sep 11, 2011
its good to get it all out sometime. I know I pretty much have tried and tried to take care of my liver for the last ten years. First time I went on treatment it was a flop, second time it worked and I was neg the whole time I was on the meds, but then it came back after I went off the meds. I went this summer to have a ck up on my liver and everything was good my alt an ast was 30 and 40. My viral load was 334 thousand which is good my doctor said, so I had a liver biopsy done and it was not good, he said it showed some scarring and he wanted me on this treatment right away, So you never know. I thank God for my blessing everyday. Good luck to you and everyone. We will get through this Victorious.  :))

1717054 tn?1316712653
by elpasolady, Sep 12, 2011
Thanks everyone all your sweet comments, and for actually taking the time to read this novel.  Didn't know if anyone would bother once you all saw the length, but that is not really why I wrote it.  I just wrote to write!
I didn't mention that I , too, smoked cigs for about 23 years.  I quit 19 years ago. One more thing my liver held strong against.  Really, really grateful, is all I can say!

Avatar universal
by curiouslady1, Sep 12, 2011
This infection is so capricious isn't it?  I also have done some serious drinking on occasion over the years and, after a 40 year infection, my test results also came back as f=0-1.  I was flabbergasted.  I have decided that it is ok for me to say no to rescue if my clinical trial doesn't work.  But I will have to deal with fat on my tummy regardless because FLD will get me before HepC does most likely.  Thanks for posting elpasolady (why do keep reading that as elapsolady?).  These are important matters to contemplate.  Life is so uncertain.  

789911 tn?1368636783
by his3707, Sep 19, 2011
Thanks for writing all that down for us.  As insomnia sets in it is the only thing I am interested in reading at night.  Our stories.  How we got here.  I wish I knew you all in person.  We have traveled the same roads.  Unfortunately I have had to leave some friends behind me as I do not wish to stay where they are.  It is time to move on.  Thanks for your inspiration and I so hope you continue to be sx free for the most part.  I would be lying if I said I wasnt jealous .   :)

1856046 tn?1330237245
by BigDaddy_59, Oct 27, 2011
Thanks for your honesty - the truth will set you free, so now you can let go of any guilt you may have felt!
OK, now it's my turn...
I been dancing with Vicodin (and pot) throughout my sickness and "pretty much" keeping to the 2000-mg acetominophen daily limit for people with cirrhosis. OK, now I am free too!
By the Grace of God and AA, I put down alcohol 16 years ago which was 8 years before I found out I had Hep C and now I am going to both AA and NA and quit the pot 5 days ago and the Vicodin a month ago. I am starting on telaprevir in December (my 4th treatment) and want that 90% cure rate!
Stay strong, God isn't gonna let you go for a long, long time!!!

Post a Comment