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.

[cquest]

I had the upper endo thurs, he took a 'couple of biopsies' I assume of my esophagus or stomach maybe...I was so woozy from the meds who knows what he was telling me...anyway, he seemed very distant about the tx for the hep c...he was vague when I asked about when I would starting tx...says call in a week for results of the bx's, he didn't want to discuss the hep c...maybe it was the drugs but it makes me think whatever is going on w/my stomach/esophagus/hiatal hernia/whatever could be trouble somehow...oh well, I will know in a week.  
Cin

[cuteus]

the endoscopy only sees the stomach and esophagus as far as I know. You got to be ready to assert yourself with the GI, he has to know you mean business as far as getting rid of hcv goes. What if he decides to pull you off tx because you are still detected at wk 12 like I was?  know him before you start and let him know you.

[cquest]

I am thinking the same thing, I felt very uncomfortable about acccepting his suggestion that no bx is necessary...I wonder if they can see anything when they do an upper endo? Can you see the liver ducts or anything that way? That was the only thing that came to mind...

[friole]

I would insist on the biopsy as well.  My GI was of the same opinion --you should treat no matter what so why biopsy.  I needed to know to make an informed decision.  You should have all the information you can get before you start.  And even if your biopsy does show little damage, you might still decide to treat. I did.

[token]

how much damage are you talking about?
What stage and genotype?

[cuteus]

I would insist on a biopsy, it is the only way to know how damaged the liver is. If it is stage 3, you might want to extend the antifibrotic effects of interferon, his reasoning puts you in a disadvantage and makes no sense. You want to know the shape your liver is in. It is your liver not his, and he does not have to live with the consequences of severe damage if there is any.
A radiologist did mine in seconds, with ultrasound. Maybe he is not comfortable doing them. Ask him how many he has done.

[cquest]

I am new as well and have just gone to the gastro who tells me he doesn't routinely do liver bx's. He believes that it might influence my decision to tx (as in good result why bother to tx and if bad, depressed and won't follow thru w/ tx). He has me scheduled for an upper GI this Thurs. due to pain and nausea w/'markedly enlarged' stomach, he thinks there could be a stricture...anyway I'm thinkin that I should call him and sugest he do a liver bx and the upper GI at the same time...kill two birds with one stone...I realize I would have to have it done at the hospital where they have a CT scan and they would have to wheel me from Endo to Rad... Or, should I just go along with the plan? He says they should know in 3 months whether or not I will be able to clear of this thing and if not, then do a bx? He has given me scripts for Peg and Copeg which I will probably get started on after the upper GI. What do you all think?
Cin

[token]

Hi everybody, I'm also new to this site, I actually discovered it two days ago and love it!!! It's great!Everybody is so suportive...
I'm from Croatia and tested HCV positive a year and a half ago. I was shocked, depressed at first and of course worried that maybe I passed it to other people around me... luckily I haven't (not even to my ex-boyfriend who sometimes used my razors),
I thought that I was dying while I was waiting for the results... A year and a half later I can say that I know a lot about this serious disease, and have actually found most of the information on the net. There are same really great sites out there and it is ''really important'' for you to know what things to avoid and how to improve the quality of your life...the sad fact is that doctors won't always have the time to explain all the details....
Anyhow, take care and good luck with your results and the biopsy!!!

[Leany]

Hi, I am also new to the site. I have had HCV now for 20 years with no liver damage or side effects of the virus. I have five children , non are positive .
I found out 13 years ago due to a blood exposure. Then it was called non A/B . Thru the course of the years I have come to realize that while much is known about Hepatitis there is an awful lot not known. We still are finding out more each day.
Find a good Doc, test, then make decisions based upon your results.

[susan400]

Hey there and welcome.  Welcome to Puffin, too!  Iceboy, what part of Iceland to you live in?  My great-grandmother was born in Rechylvic (not sure if that's spelled right!)  Anyhow, I've always wanted to visit Iceland some day.  

I've been on this forum for a long, long time.  I've been through many treatments.  Some people probably think I'm nuts.  That's alright.

Take care,

Susan

[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

[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

[Puffins]

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

[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]

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]

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  :)

[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.

[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.

[Bill1954]

Hi there, neighbor! I live near Placerville -

Bill

[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]

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.

[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.

[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.