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Hepatitis C Community
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Avatar universal

Hello and welcome other posts

I just wanted to say hello to everyone. I never find time to get online these days. It was so good to see Genedog, scruffy, DD, TNHep, and others I haven't seen around lately. So glad you are all still coming by. Congrats to those who have learned of SVR and non-detectable status, best of luck to those starting out. (My stats 45 yo F, Geno 1b, starting vl 650,000, week 29 of 48 and feeling quite well, undetectable week 24.) Please use this space for questions.
Lauren
49 Responses
107513 tn?1232290064
Hi Lauren, glad your doing well. Getting closer to the finishline too!!

Wanted to but in and tell everyone the reality of awareness in college, and society around us.
Friday my wife had to teach a class at a community help center for juvenile dilequents and criminals. There where 87 people in the class, and the topic was Hepatitis. Hmmm, wonder where she got the idea huh?
Well we made a HUGE board with information on Hep A, Hep B, and of course Hep C. Do you know that only 11 people in the ENTIRE group had previosly heard of HCV?
Did you know that MOST had prison, or jailhouse tattoos, and had shared needles in the process?
Did you know that NONE in the ENTIRE group had EVER been tested, or knew that HEPATITIS C causes DEATH?
The first question out a kid with tattoos all over his arms and even on his neck, was: "If HCV is so dangerous, why haven't any of us heard about it before?

That's my question right now.. Why haven't people heard about HCV?

My wife provided everyone with phamplets, and brochures that the CDC sent me to pass out, and we had enough for the class to take home to friends and family. The center is going to have all that WANT to be tested, tested for Hepatitis ASAP..

But that is the reality.. PEOPLE do not know. People do not realize the SEVERITY of the disease, and are shocked and almost in disbelief when they find out the truth.

But why haven't people heard about HCV?
Have YOU discussed it with family and friends? Have YOU encouraged someone, ANYONE to get tested?
If we don't do it, WHO WILL?
Avatar universal

Two thumbs up for you and your wife.

              Take care..John
Avatar universal
I'm intrigued by the fact that you feel so well after 29 weeks of tx.  Could you elaborate?  Are you experiencing any sx?  If so, what are they?  On a scale of 1-10 (10 being the best) how would you rate your overall quality of life in comparison to what it was prior to tx?

Stories like yours are very, very encouraging and need to be told to give others hope.

Thanks for sharing!
Susan
Avatar universal

Wow, you sound very pro tx lately. When did or do you start.

Best of luck to you....John
Avatar universal
Why do you assume that someone who isn't treating is somehow "anti-treatment?"  The current treatment is very appropriate for many people and I often encourage folks to pursue it immediately (just ask Cougareyes).

I'll start treatment (either the current Peg/Riba combo, or a future drug combo) when the time is likewise appropriate for me and my particular circumstances.

Susan
Avatar universal

Hi veg, so glad to see you back... I feel pretty good, go for my EGD and CT scan in the morning then maybe next week i get to start jabbing and popping (oh yeah baby). Im type 1, stage 4/4 and grade 3/4. SOOOO im not one of the lucky ones that can wait for better tx. in the near future. Hope your doing well.

Take care and keep your dippy way....John
Avatar universal
http://www.usnews.com/usnews/health/briefs/infectiousdiseases/hb041021b.htm

A brief article on those who clear on their own.
Avatar universal
please let me know how it goes, okay!  I'll be thinking bout you, you'll beat this thing...

You're in good company here with Goof, Jim, Coug and a few others to guide you and give you a helping hand when needed while you're in tx...

*dipster*
Avatar universal

I thought what i said was that you sounded pro tx. So i would assume anyone pro tx. wouldn't want to wait... My mistake i quess, anyway you take care and be well.

                        John
Avatar universal
Hi there, how you doing?

Thanks for that link...It basically talks about the 20% that spontaneously clear the virus...I would love to see a study done on people that have had it for years and don't have significant liver damage, such as myself...I hear from the medical gurus that some people have a "dormant" virus and those are the ones that can co exist with the virus, not so sure about that one, maybe I will be in that category...Hey, may as well shoot for the moon, eh!  LOL

Again, thanks...Most of your posts are geared towards the tx options and new trials, it was nice to see that, appreciate it...

*dip*
Avatar universal
You wrote: "So i would assume anyone pro tx. wouldn't want to wait..."


Ahhh, if only it were that simple!  

I'm pro-capital punishment, too, but that doesn't mean I want to jump into an electric chair (Disclaimer: I'm not equating tx with jumping into an electric chair) LOL!

Bottom line....it's not about being "pro" or "anti" treatment.  I'm neither of those.  It's about making the best choice for my particular circumstances and encouraging others with this disease to do the same.

Susan

Avatar universal
Hi John !

Long time no see, how you doing?

Things here are going good, keeping as busy as my body will alllow me to...

I started a Chinese herb, vitamin, diet and exercise regimen 6 weeks ago and I am starting to feel a bit better...My liver pain is not as prominant as it had been and my energy level is just slightly starting to improve, almost to where I can do a reasonable jaunt on my treadmill...But, eating a liver freindly diet sucks!  LOL..It's very hard to discipline myself to eat all the proper foods and amounts...But, so far so good, I am sticking to it 100%...I have a lot of years to keep this fibrosis level at bay and will do anything humanly possible to achieve that...Although sometimes I must admit, it seems unattainable...I hear from this forum that the new drugs are right around the corner, not so sure I believe that...At least not here in Canada anyway...

What's going on with you?  How you feeling?

*dipster*
Avatar universal
I almost put little dipper up there....first I thought dip, then dipper, then astronomically.....didn't want you to take it the wrong way LOL (since we are into nicknames here)

I am fine thanks for asking, hope you are well. I have wondered about the issue of coexistence, etc. Even though I have had no biopsy, ultrasounds and my numbers didn't raise any red flags. As you have probably read in some of my prior posts, I have read that viruses do tend towards co-existence over time, as they need us to live for themselves to survive. I also never smoked, never did drugs, and was never a big drinker. I went entire years without even having a beer, even before I found out.

I always attributed my young age of infection to being helpful to my cause. I have read some things on that, and I was infected via blood transfusion at age 16. I don't think I ever had elevated enzymes until 2 years ago (have had it for 21 years). I too, would like to see that type of study, and also more on age of infection. I think if I look enough, I will find them, and if I do, I will post links.

How long have you had it, and what was your age of infection? (I promise, if you tell me you got it at age 15, and have had it for 20 years, I will still consider you 21 years old).
Avatar universal
We have similar lifestyles and histories....

I found out in May of this year I have this...It was discovered during a routine blood panel, slightly elevated enzymes lead them to a antibodies test, to a PCR and genotype..

I am 54 yo Female, geno 1A, stage 1 grade 1 with low VL...

I am about 95% sure that I got it from a blood transfusion when I was 17 years old in Massachusetts...I have never been a IVDU, no tattoos, no piercings, only other way would be through dental cleanings or a surgery back in 1991...

I was blown away when I heard I have this, as I am sure you were too...I did extensive research into today's combo's and do not want to go the conventional tx route...My major concern is will I have time to wait for the new drugs to come here in Canada...I may be a stage 1 today, but will I be tomorrow?  I don't think anyone knows...But I am hoping all this effort I am putting into herbs and vitamins and diet and exercise will work...

Why haven't you got a biopsy?

*dipster*
Avatar universal

First, let me thank you for all the great info you provide here.

Second, Since veggie is a female i doubt she minds if you call her "the little dipper"

Third, i think its safe to call jim, "little jim" since a recent post by him stated something about a previous gf and 1 to 1 and a half inches.

Keep up the good work.... John
Avatar universal
Thank you both.
My doc is not a big fan of a biopsy unless it is needed. I posted somewhere else (I have no idea where as I have been all over the place today) that he uses ALT/AST ratios and platelets as being important indicators, etc. He is also in contact with researchers and also has correspondence with Dr. Schiff. My last set of ultrasounds of liver, pancreas, and spleen were unremarkable. He also palpates to check for swelling, hardening, and whatever.
I really don't want one, and it seems that biopsies are being recommended less around here. He has treated many in his office, but those either on a transplant list or with tougher cases, he refers out. When I last saw him, he successfully treated 2 nurses (not employees) who were geno 1 with 18 months of treatment. He actually told me PI's would be the way of the future before they ever got into the clinic (a few years ago).
I hold him in high regard, and he does respond to my emails.

I guess, prior tests didn't indicate a need for something more invasive at that time.
Avatar universal
John..LMAO!!!  You're cute!  Little Dipper and Little Jim..hehehe, not so sure Jim is laughing though...*smile*

CTON:  Yeah, I had a hard time convincing my doc to order a bx too because of all my tests showing no significant damage, I just wanted it as reassurance...I am the orignal worry wart and needed the comfort of the known...It showed I have mild fatty liver too, which threw me for a loop, but I am trying to loose the xtra few pounds in hopes that will take care of that nonsense...

I emailed Vertex last week and haven't heard anyhing back yet. I was asking about trials and when they will open up the list for the next phase of 950...I don't imagine they will do trials here in Canada though...

*lil dippa*
Avatar universal
I think if I wanted a biopsy, he would have no problem in granting it.

I don't think any trials are planned in Canada, and the phase 2 trial starting next month is small, and I think the clinics already know. My experience with them, has been that they maintain a separation with the trial facilities, and they always refer me to www.clinicaltrials.gov.
Hopefully they will respond to you soon, but I made a comment to someone I email that I had a feeling they might be hard to get a hold of around this time because of the conference, and the web calls. I left a message for my contact, but I think he will have a lot of catch up when he gets back in. I'll bet he doesn't call me back this week.
Avatar universal
Oh that's right, forgot about the conference...They have a lot to catch on I am sure...

I soooooo hope the PI's will be my answer to SVR...Those scientists have a lot of people at the edge of their seat these days, let's pray all that schooling and research pays off!!!!  LOL

*dip*
99052 tn?1270987120
Hey good to see another online person here that is doing well on TX I am on week 42 and feel pretty fine as long as I don't lay on the couch in front of the tv when I do I feel sickish . I do much better staying busy.My last shot is my wife's birthday New Years Eve.
Avatar universal
Hi there..greetings from spain
Is reasssuring to hear that there's people on the same situation I am. Wait/see status. My 3 docs didn't think I needed a biopsy and my stats were ok but the ALT on 80 (The PCR showed geno 1a, 2b and 5 million VL)a bummer :-(. I had a FIBROSCAN and I was F0/F1 on metavir scale. So no biopsy yet but told not too worry too much and comeback in a year with new blood tests and an ultrasound... So my question is..How can I have so little liver damage if I have 2 genos and a pretty high VL? How can I be calm while I wait? Don't drink & don't smoke but I kinda of ate all kinds of things(junk food, parma ham, sausages, cheeses and chickpeas)Typical spanish foods..But I'm slowly going vegetarian :-)

Vegas: Plz recommend a good diet for a carnivorous that wants to go veg slowly ;-)

saludos
the diver
Avatar universal
glad to hear you are doing so well..you're over half-way thru!!! i've done 8 weeks of reduced doses, and this week, start on full dose and the beginning of my 24 weeks. love this doc!!!
Avatar universal
Hey Sno,

Keep reminding me about the stay busy thing, and the mountain climbing etc.  I forced myself to do a two mile hike in the woods today.  Broke me out of a four day slump.  I
99052 tn?1270987120
Yes I have been blessed on being able to stay busy to combat the symptoms.Before I started TX I had read about taking it easy the day after the shot,It usually dosen't work that way for me Im on call 24 hrs a day 7 days a week and some of my hardest days have been the day after shot night, a little tylenol and good to go.Now my wife could only work 2 or 3 days a week and she is a working maniac,when she was not at work she would be outside draging herself thru the garden weeding.It was much rougher on her and the last 10 weeks were muder.She made it and her 6 month test was clear.She feels great and running like the champ she is. Good luck on finding your path.jeff
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