Brigid,

It's POSSIBLE that HCV MIGHT cause brain damage. Even if they prove conclusively that it does, that only means that some percentage - probably a small percentage - of us actually will get it. Even cirrhosis is only a POSSIBILITY. HCV *CAN* lead to cirrhosis. Doesn't mean it WILL.

Cars can kill us walking across the street. What's the solution? Lock yourself up? Become a hermit?

All we can do is our best to eat well, not drink or drug, take milk thistle.

If HCV doesn't get us, old age CAN also cause dementia! What are you gonna do? Ya' can't worry about every possibility. That's my theory.

Of course it's easier said than done. i was freaking out about a week ago - posted about the STRESS of waiting!

I am not really a spiritual person.. But I think there is a scripture.. Paraphrased here.. It's appointed unto man once to die..
I am gonna die.. Someday.. One day.. I am.. I don't worry about it.. Like Rass said.. I could get hit by a car.. I don't want to.. I don't live recklessly.. But when it's my time. It just is..
Personally.. I hope it's quietly.. In my sleep..
I always say.. I have hepc.. It doesn't have me..
Maybe I should worry more.. But it is what it is..

We are OVER informed today. It gives us more to worry about.

I was woefully ignorant when I was diagnosed in 1999 & it is unfortunate that a lot of docs need to be better educated about HCV. I printed info. that I gathered from HCV Advocate & other organizations so I could go to my appointments better prepared to discuss HCV with the providers instead of going in confused & fearful. I rec'd too much pitiful advice & misinformation over the years. I lost my husband to the virus in 1999 but his brain function was good right up to the end ... he actually drove himself to the hospital when he had difficulty with pulmonary hypertension. The reality of what HCV can do is indeed scary but it is such a slow progressing disease that it doesn't have to be the end for everyone. Complications vary, we are all different, some people clear the virus on their own, more people than ever before have achieved SVR on triple therapy as compared to the old standard-of-care. Neither of those treatments worked for me & I had worse side effects from triple therapy. I know some people who have failed tx several times like me and they have achieved SVR in the Gilead clinical trials with the combo Solvadi (Sofosbuvir) & Ledipasvir. For what it's worth, I recently talked with 2 women who are SVR 24 from those 2 drugs. They were in the LONESTAR clinical tiral & they told me to wait for this tx if my Docs think I'm healthy enough to do so because it was a super easy & shorter IFN-free tx with sides no worse than taking aspirin. Ledipasvir is expected to be submitted for FDA approval in the first quarter of 2014 with hopes for FDA approval to be fast tracked by the end of next yr. For all of us with HCV it is important to be vaccinated against A & B.

The people here are an incredible source of wisdom & support. In the past 15 years since diagnosis I have struggled with depression, anxiety, fear, insomnia, overwhelming obsession with all things liver-related and while it isn't always possible, keeping a positive attitude & fighting the good fight is worth the investment toward keeping me relatively upbeat & as healthy as possible while living my life waiting for the "magic" tx that will once & for all eradicate this problem. Hang in there.

...and, we are the brink of seeing HCV be a CURABLE disease!! the is VERY POSSIBLE that all of us here will be cured. Even you Bridget and others without insurance. There are programs and many of the pharm cos provide meds for those without insurance. There was a post yesterday with links to a US federal program with charts of income limits to qualify.

This is the thread: "You CAN get Sovaldi assistance on federal insurance"

Let's all get cured by 2015 and have no more worries or fears.

I really disagree about the scariness of posts , or being categorized which one is the most or the least. Nothing is pretty about hepatitis C.
The scary ones in my book is stage 4 Cirrhosis when the stomach needs to be pumped from the excess water build up, because the next step is liver cancer, or liver transplant.Scary is the divorces bought on by the treatments, or the severe depression as the lesser known byproduct of the disease. Scary of the fatty liver syndrome, the type 2 Diabetes, Vasculitis, Cryoglobulinemia....not one of these or nice to have and not everyone got them. But they are there, and the posts are informative in nature as most of us clueless what to look out for, or ask the doctor about.

We are here to talk about all of this in whole, try to cover as much subject as possible with out limitations, or moderators, freely openly so everyone who interested in the post can make their judgment and to read or not to is a personal call for all of us.

Brigid, I know exactly what you mean. I think the fear factor comes with a lot of different conditions. I can only imagine the gyrations my brain would go through if I had HIV or cancer.

When I was first diagnosed, I immediately thought of a good friend who had HCV and died from liver failure 15 years ago. I just knew that would happen to me, that it would be a slow and painful death, and that most likely my dick would fall off first, LOL.

Part of that fear lead me to complete 48 agonizing weeks of triple last year and not wait for the newer drugs. The good news is that by reading everything I find about this disease, I have actually become much more informed than most doctors.

I won't know for another 6 weeks if I am SVR or not. But I do know that if the virus is still detected, I will be able to calmly and rationally make a decision. And unless my liver tests showed the need for immediate action, I would probably wait for a bit just to make sure there were no hidden time bombs with the new drugs before I treated again. I won't make the next decision with emotion, like I did the first time.

Peace

Bob

And a complete agreement with Bob. Most of us completely clueless at first about hepatitis, and because of the postings by the end of your treatment more educated on the issue than most doctors.

I don't think any of us even heard of the IL28B test prior or to come to the site. So as i remember when the doctor was asking the patients which Triple they want to go with. Unfortunately even the doctors didn't know much about this drugs, beside the claims made .from clinical testing.

And everything is scary about HCV because it kills and makes you real sick beforehand. But the greatest part is how the new meds are just arrived, and so as Obamacare where the insurers will have to cover many of this treatments. Much as this huge backlash going against it, it is God sent to those who don't have any , or educate insurance covering.

As i voiced this prior it is not the people who is most against the care is the hospital doctors with the million dollar monthly quota, (yes they have quotas this days) The hospitals who wont get paid $54 for a box off tissue and the needless tests, the labs who wont get paid $1800 for a simple blood test, as it almost sound like a legal racketeering. And the insurance companies constantly raising the price to cover the high cost. And now this huge lobby against it , to protect their wealth.And idiots with no insurance of any kind NON like my friend in LA is the biggest opposition to Obamacare. Makes me wonder why? As he haven't seen a doctor in 600 years even as he has major case of gout , prostate issues and who know what else.. THINK.

As a reminder Christmas was invented in the first wold war by the Germans and was not about Jesus but St Nickolaus or Santa Claus in the US who was bringing presents to the kids as their dads died or fighting the war at the front lines ...Jesus got weaved in to the story line eventually, but Christmas as a Holiday was NOT celebrated up to that point. The Christmas tree and the whole shebang is a commercial by product of the celebration.

Brigid - reminder just noted that the post YEAR IN REVIEW has all the positive news without any fear mongering.

If you are still alive today that is what counts. Take care of yourself and deal with tomorrow when it comes.
I worry about soooooo many things. My worry doesn't prevent any of these things from happening if they are meant to happen. So I don't know why I do it. It is something that I have to work on. HCV is at the very bottom of my worry list.

Hi Brigid. Fear is the thief of dreams don't forget.

Take it all with a grain of salt.

I was 29 when I first went into the clinic to treat HIV in 1997 (contracted it in 1995), which was fairly scary then. The well-intentioned FNP showed me the table that I would live for 5 years without drugs. It may have been true. Who knows? I jumped on these awful early HIV drugs that ended up being impossible for me to take. I had to go off them 3 months later. In their defense, they did tell me that they didn't know the best way to treat HIV then. Anyway, since that time I took matters into my hands and made my own tx decisions, when I went on drugs, a period of time off of them years later, and when I resumed them as well as which drugs I'm taking. I take a 3 in 1 pill nightly and it couldn't be easier. I'm alive and well with HIV over 18 years now and my immune system is strong. So yes, go with the flow and make several good decisions but don't fret about doing everything perfectly or right. Doesn't exist.

I strongly recommend getting your A & B vaccinations though. :-)

Happy Holidays to You!

I also want to add that no fact is scary or fearful. Facts are facts. Fear is an emotional reaction and the challenge is to experience our emotions, recognize them for what they are, and recognize that we have control over our emotions - lest there would be total chaos as everyone acted on anger etc.

Facts are facts We need to weigh them for validity and think long and hard about what we can do, such as take care of our health in ways that are able to...

Not saying it's easy...it's like telling someone "don 't worry." (Did i say that already?) But fear is a CHOICE, as is worry.