Interesting Comments from My GI

[Tallblonde]

I had a GI visit yesterday -- the first since my biopsy last fall.  I told him about this site and our lively discussion about treating or waiting.  He reconfirmed that in my particular case, waiting was indeed the best option ("That's what I would do if I were in your shoes," he said).

Then I asked him this question: "Does everyone who is diagnosed with HCV eventually require treatment, or can some people actually avoid it entirely and live a high-quality life with a normal lifespan? His answer surprised me.  He said that there are many patients who never need treatment because their liver damage just doesn't progress to a significant level and their symptoms are tolerable.  Delighted to hear this, I then asked if that was a possibility in my case.  His answer:  "Of course it is."  

I don't want to suggest that this snippet of conversation means that the vast majority of HCV patients don't need treatment. But I think it certainly contradicts the "gloom and doom" and "treat now, before it's too late -- the virus is eating your liver 24/7" statments that often appear on this board.

Susan

[Tallblonde]

So what?  We all know you don't like ___________, but that doesn't stop you from repeating it ad nausem.  

Have a great day Scott.  Maybe the virus isn't eating your liver, but the bitterness sure is.

Susan

[Tallblonde]

Thanks for the good wishes.  Of course, I'm not going to wait 30 years for another biopsy.  I'll continue to have them every 2-3 years, as recommended, and adjust my plans accordingly.  Or, if intolerable symptoms develop, I'll sign on for treatment immediately.

I know there are newbies lurking out there who are scared to death when they read "the sky is falling"-type statements from a few posters who are convinced that immediate treatment is the only appropriate course of action.  I was one of those newbies back in October.  In fact, the first words out of my mouth at my first GI visit were:  "How soon can I start treatment?"  I was greatly influenced by what I read here and I now want to send a message to other newbies:  GET THE WHOLE STORY!!!

Susan

[Tallblonde]

Of course I'm afraid to treat.  Who wouldn't be?  Did you think that was some deep secret that I was trying to hide from you and the others here?  

I'm even more afraid of treating when I have two GI's recommending that I wait.  

Perhaps you're afraid that you should have waited.  That might explain your bizarre, obessive behavior lately.

Susan

[tina b]

My hubby has a friend that was dx with hepC in 1993.....back then treatment was 3X weekly, he chose not to treat and  given up alcohol all together........well, it is 11 years later and he still hasn't treated and is doing GREAT! He just recently decided to give up the cushy office job for one of manual labor and hasn't been this happy in years! He is 47, never got a geno, has continuos elevated liver enzymes. Yes, he has/had some hepc symptoms, upper right quadrant pain, itchy palms, fatigue, dark urine etc

[cuteus]

He is speaking from the stand point of liver disease only.  As it has been discussed many times hcv prefers the liver for replication, but it doesn't skip over every other of our systems.
Take the initiative to read on extrahepatic problems and cryoglobulins.
A GI will not see those with hcv related diabetes(endocrinology), renal disease(Urology), arthritis(rheumatology) and God knows where else the virus is creating havoc.
I am glad your liver can stand the virus attack as well as your GI stated, he must have some crystal ball, but how about the rest of your organs? Can he reassure of that?

WE KNOW you only want to be here to monitor our behavior and defend those that validate your decission.  We do not need a monitor/web police. I guess there are no vacancies.
You like to be in the spotlight so much I am surprised you are not here posting every day, to stir things up.  But I guess you only need one day to start things up.

[Tallblonde]

Chevy -- thank you for your comments.  I wish you much success on treatment.

Scott -- I have no idea what to say to you anymore.  Your hostility, obsessiveness, and venom are beyond my comprehension.  I start a thread with news about my GI visit and it sets you off ("I'm tired of this nonsense," you write).  Anyone (Thanbey, GwithHepC, me and others) who dare to post anything that suggest alternatives to treatment gets your back up.  Then you start psychoanalyzing people's motives ("You're clinging to her like a scare daughter to a mother,"  Puleeze!), and then resent it when we try a bit of our own psychoanalysis of your motives.

I'm sorry your HCV is worst than mine. I'm sorry you didn't or don't have the options I do.  I'm sorry life dealt you more of an unfair  blow than it has dealt me.  (Hey, do you have kids?  Well, I don't because HCV causes my body to reject the fetus.  So maybe you're luckier than me in that category).  Scott, it's wrong for you to be so hostile to people who express viewpoints that you don't agree with.

Susan

[Tallblonde]

You write:  "You like to be in the spotlight so much I am surprised you are not here posting every day, to stir things up."


What an ridiculous statement!  If I liked "being in the spotlight," I would be posting here everyday (like you), for God's sake!

[cuteus]

if any one wants to wait until they are older, have symptoms, all the goodies that make tx less effective, who are we to tell them otherwise? Is their life quality.
When they feel it is their "duty" to right a wrong in this forum that is another story.

There is nothing to fear but fear itself.
it has overcome many.

[cuteus]

yes, I'm here everyday with those like me that need support the most, those with hcv symptoms or sx from tx.
The difference between you and me:
I don't post to start an argument or attack those on tx that try to ease their symptoms with humor.  Humor that your almighthy sense of righteousness finds reprehensible.
  I am done with letting you push my buttons with this thread, that is giving you too much power.
be well with your healthy liver and magical GI


scott, you hang in there with us, just stop giving them so much power over how you feel and respond. we need your perspective too.
  It makes me angry too, but I stop myself many times until a blatant statement is made.
I have the power to stop them from disrupting my resolve, or trying to.

[cuteus]

That rbc looks pretty good after all those shots, GOOD for ya! no Procrit for you yet.  I am sure you are sad about missing out on the extra poking.

be well

[Tallblonde]

You write:  "Yes, I'm here everyday with those like me that need support the most, those with hcv symptoms or sx from tx."

TRANSLATION:

If you're not on treatment or suffering from side effects -- GO AWAY, YOU'RE NOT WELCOME HERE.

[Tallblonde]

You write:  "I post to offer support, to receive support, to learn things -- for people that are TREATING and SUFFERING from the sides."


TRANSLATION:

If you're not on treatment or suffering from side effects, GO AWAY, YOU'RE NOT WELCOME HERE.

[Tallblonde]

Thanks for the list of questions.  I have an appointment next month with my other GI (the one at the Cleveland Clinic who also recommended last November that I postpone treating).  I'll run your questions by him and see what his response is.  

Susan

[katch20]

I went to 2 hepatologists-- one the head of USC, the other asst. director of UCLA Liver-- both said there is a growing body of research that suggests that in a large # of patients, HCV progresses to certain point and stops.  The virus remains active but the liver disease does not progress.  Don't know what to think, but i found it interesting.  I have chosen to treat starting 4/24, because I just can't be comfortable with an alien army in my body-- whether it is eating my liver up or not.

Scott_ you are informative and intelligent, but if you want to be banned from here why don't you just stop coming?  I don't know you and I am not picking a fight, and I share your disdain for Thanbey-- but why be so mean?  Tall blond is just sharing information, not trying to convince anyone of anything.

It pisses me off when I have worked up the courage to start and then somebody says something compelling that casts doubt on my decision.

Aren't all we newbies scared shitless?  I don't want thyroid problems forever... I don't want to feel like hell for a year... but we all have our fears.  My fear of HCV is greater than all others combined, so I will treat.

[Tallblonde]

Best wishes to you as you embark on treatment.  I certainly understand your desire to not have "an invader" in your body.  Please keep us posted on how things are going with you.  In spite of the recent conflict on this board, there are still lots of caring people here (including Scott, I'm sure) who wish you an easy road.

Susan

[katch20]

Thanks for the support.  I will continue to read here for the good info, humor, stories and debate.  Life is hard enough w/o HCV-- sometimes unbearable with it, so I offer my good thoughts for everyone here, and hope all are well.  I will keep you all posted.  btw, the head shrinker gave me lexapro 5mg, and I LOVE IT.  I have worked myself into a nervous state over the last year since dx, and the lexapro makes me feel like me again.

[GreatBird]

There's no good reason for this sort of animosity. I don't know anyone on this site who has the right or has demnonstrated the wisdom to point out the motives behind other people's postings.

Is anyone else here aware that Chinese medicine considers the liver to be the place in the body where anger resides? If you look up <a href="http://dictionary.reference.com/search?q=liverish">liverish</a> in a standard dictionary, you'll find that it means "having a disagreeable disposition; irritable." I think that those who feel its okay to let it all hang out and be as nasty as they please may just be showing the rest of us that their livers aren't well.
And you know what? I already knew that. So be nice. Maybe that would be good for your liver, eh?

On the subject of doctors who don't advocate treatment, mine doesn't see any need for me to do so at this time. He thinks my liver is in great shape and because I don't have any symptoms there's no pressure, especially considering I've had the virus at least 25 years. I don't think he'd go so far as to predict whether my liver will become more fibrotic over time and at what rate, but he does say that some people's don't, and that its likely mine won't.

I think its totally possible for someone to not want to treat for reasons other than being afraid. There are many perfectly logical reasons to avoid it, just as there are perfectly logical reasons to do it. None of us live the same lives of anyone else here. None of our DNA is the same. Some of us have several medical conditions going on at once, which definitely makes it more complicated, and some would never know they had the disease if it wasn't for a blood test.

What this place never has been is balanced, and that's really a shame. To my mind, posts that provide thoughtful and reasonable viewpoints on all the issues relating to HCV belong here, and people should be able to post without fear of being slammed.

The truth of the matter is a lot isn't know about HCV and its progression and why it behaves differently in different bodies and why some people achieve SVR and some don't (and what can be predicted about this). Until this is all black-and-white, I encourage the great warriors here to keep an open mind.

[honey1616]

woooo weee...this thread is getting heated as usual and I hate more then anything to see my fellow heppers get all worked up over here.  Actually the thread does state "interesting Comments" so I wouldn't get too worked up over this thread. Noone loves a great debate more then me but this one is wasted breath....I really don't even know if everyone here on this thread has an interest in hep c...Hmmmmm...maybe more in pulling our chains!  I always say...when in doubt...check it out!  And you should...Speaking of storms...I got one here brewing and I hope I don't lose my connection!  I'm feeling just a tad bit crazy!

[newb]

Please read BeatHepC's post #24. That's the crux of the issue. When you're young you may not feel all the effects of having hep c, but as you age, all these little problems will appear. You're lucky because you'll know WHY you're getting all these things like fatigue, joint pain, vertigo, circulatory problems, ad nauseum, and you're lucky because you'll still have the choice to treat. Believe me, when you reach your 50s, you'll be singing a new tune and wishing you'd treated when things hadn't deteriorated so much. Fibrosis is only part of the issue, there's so much more.

Did anyone else catch Jay Leno's hep c "joke" last night in his monologue? Basically he said "Hey, studies have just proven that you can catch hepatitis C from a toothbrush. I guess the British don't have anything to worry about."  Pretty sick, huh?