Just found out HepC Positive

[Just girlie]

My Dr. called me after routine bloodwork and told me my ALT (46)and AST (37)were elevated and I was reactive to Hep C.  Wanted to run another test.  That one-not sure what it is-came back positive for Hep C.  They only told me normal level is 615 or below and mine is 907.  Does anyone know what that is?  The only thing I have had that I can think of is a blood transfusion in Nov 1999.  Nothing else that I can come up with that I got this.  I am still trying to get into see a Dr. Norris in Indianapolis when his office is finished being moved but I do have an appointment with Dr. Paul Kao of IU Med center Feb 1st, 2006!  That seems crazy to me and any other Dr.'s in the area that I have called don't see HepC patients.

[singinlady]

Wow! February 2006... That's unbelievable. Is there a gastroenterologist in the area thet your regular Doctor can refer you to?

[Just girlie]

I was refered to a Infectious Disease Doc but the appointment in Feb is with a Gastro/Hepatoligist.  All the gastros I called don't treat Hep C. Patients and there are only three Infec Disease Docs in the area.

[Tallblonde]

I'm sorry that you have HCV.  That number is probably your viral load.  That's where they count how many viruses are present in a specific volume of your blood.  900 is a very, very low number, (anything under 800,000 I.U./mL is considered low).

From what I've heard, Dr. Paul Kwo is one of the top HCV researchers in the country.  He's probably worth waiting for.  But if you aren't too far from Louisville, Kentucky, you might want to schedule an appointment with Dr. Bennett Cecil.  Many people will tell you that he's one of the best.  A few folks on this forum fly all the way from the west coast (Arizona, Washington State) to see him.  I live in Ohio and I'm traveling four hours one-way to see him for the first time later this month.  (As good as his reputation is, it's very easy to get an appointment with him within a month if your primary care physician makes a referral).

HCV is generally very slow moving disease, so there's no need to panic.  Begin learning as much as you can so you'll be prepared to make informed decisions.

Best wishes to you,
Susan

[Just girlie]

I want to get one but I can't even get in to see a doctor.  My doctor doesn't want anything to do with me anymore.  She refered me to Dr. Stephen Norris and I can't even get an appointment.

[jmjm530]

Sorry about the diagnosis.

Regarding Dr. Kao. Sometimes you have to be a very squeaky wheel when it comes to getting seen by doctors. Try calling back the office and explain to them that you may need to start Hepatitis C treatment soon, and waiting 8 months could damage your health.

If you can't get hold of the doctor himself, make sure you get hold of his head nurse and explain your case. The appointment secretary may not have the clout to slip you in. Ask the nurse to speak to the doctor on your behalf and make sure you follow-up.

You really have to be an advocate even if that means becoming a somewhat of a pain in the butt. LOL.

If that doesn't work, start asking/looking around for other doctors, even if it means some travel.

Given a little of your history, and what appears to be a very low viral load, you probably have very little damage and may not even need to be treated. But on the other hand, you never know and really need to be evaluated by a heptologist who treats large numbers of hepatitis C patients.

Good luck and let us know how it goes.

[friole]

Last month when I was trying to make an appointment with a GI I ran into the same thing.  The one I knew treated two patients with hep c was not taking hep c patients anymore.  Is this pretty common?  It's like we have cooties. I wondered why he wasn't, and now I wonder even more.  Could it be because so many chose not to treat?

[layla]

Welcome to this forum, sorry it's under such sad news for you.  Many people got HCV from transfusions but I thought they were testing for HCV by 1999. You may want to follow up on that and find out if this was a problem where you got the blood. Perhaps they are responsible. Can anyone comment on if they were testing blood donations n 1999? It is very slow acting in most cases so you do have time to investigate and educate yourself. Nothing is going to happen quickly. The doctors who specialize in liver disease are called hepatologist and they will be the most informed. You should be able to find clinics in most big city hospitals that will have hepatologist. It normally takes months to get an appt with one but I found it worth it. I didn't want to wait like you and ended up going through 3 docs and ended up with the first hepatologist anyway I called anyway. The docs I saw first were a GI's and the other an infectious disease doc. They ass treat HCV patients but I did not find them informed or aggressive enough for my liking. LL

[Honey15637]

Yes,,,you are correct in your thinking.  Hepatitis C was tested for after 1990 so anyone that received blood before that year,,,would be at a possible risk.

[poolcue]

Hi Just Girlie,
You could try Dr. Pletcher Columbus, Indiana he is a caring Dr.
I also do the IU Med Center but for other health reasons.
I wish you the best with your search for a Dr.  Just don't wait until next yr.
Smiles,
Diana.

[LvdByGod]

i agree with what everyones saying you got to keep trying until you find a competent dr to see you sooner than this. i am in the chicago area and see dr Cotler at UIC and i only have to wait a couple months for my appointments. dr Cotler is pretty good and quite knowledgable. i have no complaints right now and he let me extend treatment when i needed to. he also agreed to give me side effect meds as needed for the treatment. it also seems he keeps up with the latest on hepc. the only problem i have is with their office system of getting back to me when i call them. it can take a while to hear back from them unless you call the right nurse. you must call for the "nurse practitioner" instead of dr Cotler's nurse...

anyway, you could get started with them until you get your appointment with someone closer to you and then switch over. i had a few proceedures with them and was happy with the outcomes. they are quite good there. the other place in chicago is northwestern and they are good too.  

i'm not sure how far you are from chicago though...

but it is crazy that your dr is treating you that way...what does he think you will do, sneeze on him and give it to him?

you'll first need a biopsy to see how damaged your liver is. some drs don't insist on a biopsy in order to treat but "you" will definantly want one, because you will want to know how damaged your liver is from this. it will give you the info on your liver condition, good or bad and what stage and grade it is in. remember you will need to base some of your decisions on the results of it.

if it turns out to be stage 2 or higher damage you really should get on treatment as soon as possible.

i hope you will be able to find a dr soon.

remember to come here often for support. it's a great place to get info, strength and help for the sometimes difficult treatment.

sandi

[cuteus]

blood in 1999 was definetely tested for hep c, but anything is possible. it could be body piercings, tattoos, manicures and pedicures and any invasive procedure where tools were not properly sterilized, the latter is still happening.

I can't believe you can't even get a script for a biopsy. Maybe a local GI can do all the tests, including the bio, but refer you for treatment(tx) elsewhere, It is the least they could do.
My biopsy was done at a hospital by a radiologist with ultrasound guidance. It seems that any provider can request this procedure. Maybe you could emphasize that you are not seeking Tx, only testing needed in preparation.
gl

[new-sojourn]

Many of us travel great distances to see specialists.  Call the 2nd doctor up and ask them for a referal.  Call the major university hospitals in your state or surrounding states.  you're acting as if your on an island of incompetent doctors.

All blood in the official usa system is tested for hep c and has been since 1990.  Once you know the damage done, a much earlier date may emerge.

You really don't want a doctor who is unfamiliar or uncomfortable w/treating hep c patients.  ditto dentists and hairdressers, manicurists etd.  They have a right to protect themselves from a deadly, progressive, incurable disease.  B/most don't care and appreciate the info so extra care can be used.

[Tallblonde]

Incurable disease?  Are you sure that's what you meant?

Susan

[indyjo]

Hi there. I am a patient of Dr.Kwo. He is one of the most respected  hepatologists in the country and I was happy to wait ~6 months before seeing him. I saw an internist before going to Kwo, and the internist ran all of my tests including the biopsy. I asked my family doc for referrals and he provided a list of hepatologists and internists who treat HCV in the indianapolis area. Ask your doc for a referral or call the IU med center - Infectious disease dept. and ask for a referral.

[Just girlie]

First my appointment was moved up a month with Dr. Kwo yesterday.  Their office called me.  That is good news.  I also found a gastro that is willing to take me and the best news is that when I called, he had a cancellation for today!  I am going to see him at 3:00 today!  I am so happy.  Also, the 907 that my Dr. gave me is my viral load.  Now I just need that biopsy and to find out what type.

You all have been a great source of information and support!  I really appreciate all your help!  I will let you all know how the new Dr. goes today!

Best to all!

[Just girlie]

Well, I just found out the 907 is not a viral load but a DNA study of Hep C load (genetic test)  Anyone know what that is?

[Tallblonde]

Never heard of that test.  Can you post exactly what the lab report says?  (That is, if you have a copy of the report.  If you don't...get it.  It's very important to start keeping copies of all your bloodwork).

Susan