new member

[Puffins]

Hello to all, I have been reading this forum and learning as much as I can over the past month.  I have been told in 1991 after donating blood that I have antibodies to HCV.  3 doctors that I seen at that time have told me not to worry, watch my liver functions and not drink(I never did so no big deal). I lived a normal life for the past 14 years, had kids etc.  Recently I saw a new doc because of upset stomach and mentioned the HCV to him. He ran tests and confirmed that I do have antibodies to Hep C.  I am scheduled to attend a class at Kaiser to learn more. I feel so stupid and ignorant that I believed those doctors 14 years ago and did not follow up more. My LFT's have always been normal. I am terrified of what I might have done to my kids and my husband not really knowing enough facts. I know they all have to be tested.
I am grateful that I have found this forum and all of you because now I don't feel so alone.

[amommy]

hi there,
I am also very new to this forum, and feel very much in the same boat as you.  I hope we can talk more and help each other through this.  So far, this place is just awesome!

[iceboy]

Hi Puffin.

We eat puffins in Iceland. Im a newbie here as well so there is not much wisdom coming from me, but I have gone through telling my wife I have this and it was the hardest thing I have done. I contracted this before I met her. It looks like it is just strengthening our relationship. whish you all the best.

[friole]

I like Puffins - they are cute.  I'm new too - a little ahead of  you - just getting ready to start treatment.  I have learned invaluable information on this forum.  I too knew I had the antibodies (in 1993) and ignored it and I also have had normal ALT and AST levels.  My biopsy showed little damage so hold out hope.  Yours may too. Stange disease this is - slow in some and rampant in others.  Good luck to both of you in the waiting (for reaports) stage.  And ask lots of quetions here - it sure helped me.

[landfill]

Welcome.  Well, in 1991 there wasn't anything to do for it.  The present combo tx only started around 2000.  The odds are that your family is negative but you're right to get them tested for everybody's peace of mind.  My advice is to find a dr that treats a lot of hepc and take his advice.  It's the subject of a lot of research and if you live near a medical school they probably have somebody who is treating it exclusively so go there if you can.  They may send you infectious diseases, not gastroenterology.  If you decide to treat it, this board has a lot of experience with getting through the side effects.

When I was dx in 1991 the dr said that because I was 50 and my liver enzymes were only slightly elevated I should forget about it because by the time my liver was badly damaged I'd be too old to care.  In 2002 I decided to get it treated because I had just survived stage 4 cancer and I was gearing up to live a while longer.  The tx worked and now I'm glad I did it.  Best wishes for you.

[Puffins]

Thanks you all for your responses and words of support. I suspect by the time I attend the class at Kaiser, I'll know more than most.

[bon_vivant]

I LUV Puffins... they kind of look like tucan sam or something.... I think they are cool looking & adorable!
:)

[artgal]

Welcome to this forum -- great info and fantastic caring, supportive and knowledgeable people. I found the forum 4 months ago and it has helped me in so many ways. Jmjm gave you some great feedback. I just want to add that most likely your family members do not have HCV (any maybe you don't either -- maybe only antibodies). I worried so much about this and everyone in my family tested negative.  Also, many, many people live with this disease and die of something totally unrelated (like old age), so until you get firm results think positively and learn as much as you can about your specific situation and the virus itself.

[bon_vivant]

Hey, Luv the name... any chance you are named after this Alaskan bird??? <a href="http://pleikump.us/private/puffin2.jpg">Puffin</a>

[hubbyandme]

Hello puffins...I'm new here too.  My post is EIA Results...  These people are great!  A lot of help and support.  Good luck to you and yours.

[jmjm530]

That was pretty typical in 1991. Hey, I've had the virus since 1968 and didn't start treating until 19 weeks ago.

What you want to do is have some tests run ASAP to see the real condition of your liver.

First, you want to have a PCR blood test to confirm you really have the virus and not just antibodies.  

If you do have the virus, you then want to run blood tests for: (1) liver enzymes ; (2) genotype.

After that you will want a liver biopsy to access how much (or how little) damage you liver actually occured.

Once you have this information, you will be able to make an informed decision whether to treat or not, and how agressively to treat.

Keep us informed and keep asking questions. Also, if you do treat consider finding a specialist (heptologist) who treats a lot of Hep C patients. But for now, get the test to see what the real situation is.

[jmjm530]

Just wanted to add that anxiety and a sense of urgency is normal when you find these things out.

The reality is that if you've had the virus for 14 years, very little is going to change in the next few months.

That means you should take your time doing some research, getting the right tests and finding the right doctors.

An methodical, informed, well-planned treatment strategy, beats a hasty approach any day.

[Puffins]

Again Thanks for the warmest Welcome I ever received.
And to Bon_Vivant, yes Puffins are my favorite birds. And to JmJm530, you are absolutely right - knowledge is power.

[jtjmack]

Welcome...I too am new to the forum and was just diagnosed with hep...type 1a. You will love coming here to read and learn. I had my biopsy yesterday and it was NO WAY as bad as I had imagined. I am 51 year old female and have had hepatitis for between 20-30 years they are telling me. I wish you the best.

[friole]

Great that you had your biopsy and it was smooth.  Now comes the waiting game again.  Best of luck on the results.  Take it easy while you heal.

[oldclaire]

I am new here also, and I can really relate to your experience.  I got the same letter about 12 years ago when I gave blood.  I found out I was pregnant soon after and took the letter with me to my OBGYN.  He did a blood test which for some reason did not come back positive.  I think the letter may have said I had Hep B antibodies instead of C.  I still haven't quite figured it out and my doctor is not even sure.  Anyway, I guess we just need to deal with now, and stop beating ourselves up for not knowing what to do then.  I am concerned about my children though.  
  I had my biospy yesterday and barely even knew it.  I was really worked up about it, but it was okay, so don't stress about that.

[Puffins]

Hi Everyone, this is just a quick observation I have made yesterday while attenting the Kaiser Hep C class that I was scheduled for.  Silly me - I really thought I would be the only one there(maybe 1-2 people more). Wrong... I was SCHOCKED to see almost 50 people attending this class.(and I guess they do this every 2 weeks)
The class was well presented and organized and the data offered was
everything I already learned here and other Hep C official sites. Anyway what I walked away with is - they will do all the tests and treatments that are available to reach SVR if the patients make the commitments to do it. (and of course if their health is good enough)... just needed to share  :)

[friole]

Sounds like Kaiser is on top of it.  That is encouraging about the ability to take you as far as you need to go.  Are you in a big city to have that many people every two weeks?

My town is 100,000 and my doc said he has a 100 patients and gets a couple new ones every week.  It is an epidemic.  I found out today my insurance will mean that my two perscriptions will cost $30 apiece.  I was so relieved.  That was a definite factor in deciding to treat now while I had this insurance.

[Puffins]

Good News! about your insurance.
I live in N.CA very close to Sacramento - and I guess the pop. here is about 1.6 mil. still when I do the math you are correct it is an Epidemic. From what I was told the numbers of new diagnosed patients have been dropping however most of the affected are 40-60 yrs old.( and I guess aging in this case is not a good thing)
I should know - 47 hoping to make it to at least 77.

[Bill1954]

Hi there, neighbor! I live near Placerville -

Bill

[Puffins]

Hi Bill
You live almost next door ( or at least the same county) - I live in EDH.
Puffins

[Bill1954]

Yikes! Green Valley Road/Rescue here. I'll keep my eyes open at Raley's for a gal covered with feathers! ;o)
By the way, Katie Oatis runs a Hep C support group off Placerville Drive in P-ville. Let me know if you want details.

Best to you,

Bill

[Puffins]

Not only do we live in the same county but also shop at the same store... Small world!! Yes, you might see me next time you shop, black and white feathers with litle orange beek that's me. LOL
Seriously though I would appreciate the info for the Hep C support group in P-ville.
With Regards!  

[Bill1954]

I'll find you in the canned sardine aisle, no doubt!

Strings of Hope
Hep C support group
2nd Friday of every month, 12:00 to 1:30 PM
670 Placerville Dr, Placerville
Partners in Care/Snowline Hospice Bldg, 2nd floor
(Just past the new Home Depot building)

The coordinator is Katie Oatis: call Marshalll hospital for her number ( I feel awkward posting it on the net- it's her home phone) Last week we had a guest speaker from Roche that was *extremely* well informed.

If you like, feel free to write me at:

w.***@****

Please include 'HCV' somewhere in the subject line, and I'll try to get right back to you. Until then, may your nest be filled with herring,

Bill

[Ladyfhattcatt]

HI,
  I TOO AM NEW TO THIS ITE. A WEEK MAYBE. LIKE YOU I TESTED POSITVE FOR THE HEP C ANTIBODI AND WAS TOLD IT WAS NOTHING AT ALL TO WORRY ABOUT. MAKES YOU WONDER ABOUT DOCTORS DOESN'T IT.
UPON FURTHER TESTING I FIND THAT I REALLY DO HAVE SOMETHING TO WORRY ABOUT I AM POSITIVE FOR THE HEP C VIRUS GENO TYPE 2. I HAVE AHUSBAND AND CHILDREN AND AM TERRIFIED I HAVE PASSED IT ON TO MY KIDS. MY HUSBAND HAS ALREADY BEEN TESTED AND IS NEGATIVE.
IT WAS ACTUALLY THE GI DOC OR HIS PA WHO SAID I DIDN'T NEED TO TEST MY CHILDREN BUT AFTER READING IN THIS FORUM I HAVE SEEN WHERE QUIT A FEW MOTHERS HAVE PASSED IT ON TO THEIR CHILDREN. I JUST DON'T KNOW ANYMORE. I ONLY HOPE I HAVEN'T RUINED THEIR LIVES. I COULD NEVER LIVE WITH MYSELF. SEE I DID THIS TO MYSELF IN MY YOUNGER DUMBER DAYS OF OUT OF CONTROL PARTYING. I COULD TRY TO BLAME IT ON THE TWO TATOOS I HAVE BUT I KNOW BETTER. I KNOW EXACTLY HOW I GOT IT AND APPROXIMATELY HOW LONG AGO (20 YEARS). JUST WANTED YOU TO KNOW THAT WE ARE IN THE SAME BOAT.

TAKE CARE,
JUDY