finally.......now what?

[7summer7]

well by being a pushy pain in the @$$ I got myself an appointment for thursday with GI have to drive farther to get in sooner but thats fine with me, its really sad how much work you have to do to make sure your docs on the ball. you really have to be responsible for your own care. well anyways can anyone tell me what to expect for my appointment so far all I know is I have a vl lf 30200 and 5.48 and high liver enzymes (tests from my primary) so whats next?

[7summer7]

oops vl 302000 not 30200

[nygirl7]

Most likely he will discuss having your ultrasound and then a liver biopsy to determine where you stand as far as liver damage goes and then discuss treatment options and plans with you.

It's sad that we have to do the work but when we do it helps us to achieve a higher odd of having success.

Make sure you get hard copies of all of your test results so you can learn how to read them. They will come in very handy later on in treatment when you can just refer to a file or folder to see where you started and where you have progressed to.

[7summer7]

thank you for your response I also have been researching and i have more than likely had this disease for 13 years or more. since i have had 4 children i know it is very rare for my children to be infected, but I wonder you all say that babies can clear the disease early on. My last son born 3-8-07 is just 2 and when he was born he became very jaundice in hosp. for 3 weeks and got better they said he was cooms posotive which means we have the same blood type but I have an antibody that was attacking his red blood cells I wonder if this could have been that acute point and his body was clearing the virus. does that sound possible? thanks summer

[copyman]

Ask the GI how many HCV patients he is treating / treated ? Many GI's don't have a lot of experience if any treating HCV. Personally if I had to travel to a doctor I would want to see a Hepatologist (liver specialist). Best of luck

[nygirl7]

I don't know exactly what this means
"cooms posotive which means we have the same blood type "

My son (my second born) was extremely jaundiced when he was born and had to stay under the lights. I had no idea i had the disease or probably would have freaked.

Both kids are negative for the antibodies - had they had it and cleared it they would still show up today.

It's pretty rare for a baby to get it but we have had some members in here who got it that way of course.  But I think the percentage they say is like 3% or something very very slight.

I know I'm A+ and my husband was A+ and both my kids are A- but if they had the disease blood type wouldn't matter - any blood type could get it.

[Isobella]

Sounds like you getting started on the right foot.  Here's a tip....I decided to switch doctors early on.  But the initial doc had already ordered all the tests (ultrasound, biopsy)...so I went ahead and had everything done thru her, got my records and by the time I got the appt with the hepatologist I wanted-I had all important results in my hand.

My daughter(19) was born with it.  It stinks...but her viral load is low like yours so I have high hopes for her to tx for only 24 weeks.  

Good luck to you.  Please continue to keep us posted =)

[YuK]

I don't think you have your genotype yet.  You will get that one during your next lab, if not.  You are exactly right about having to be responsible for your own care.  It took me almost 6 months to sort everything out with the insurance and doctors.

Copyman is correct, ask how many "HCV patients he is treating / treated."  My first GI actually lied to me and told me he sees HCV patients every day.  About the 3rd appt, I ask the nurse a question and she answered me "I don't know, you are the first HCV patient we have seen!!!!!!  Needless to say, I was out of there, which delayed things a little longer.

[Isobella]

Another good point.....this is a diagnosis of "hurry up and wait"  Wait for the appt, wait to schedule the test, wait for results.....you get the picture.  

The wait time comes in handy for learning more and more so by the time you get the results you will be better prepared to make decisions.