Need feedback on Question List

[incharge08]

Hi all

Based on much of the information I gathered here as well as other research I have done - I developed a list of questions to ask the doctor at my first appointment with the hepatologist on 03/05/08. If anyone has feedback about what to add or eliminate I would appreciate the input.


1. What tests were taken to determine that I have HCV?
2. What does viral replication mean?
3. Are there degrees of replication i.e. severe, moderate etc?
4. Is there a “viral load” count yet?
5. If not when will this be tested?
6. what are my chances of having liver damage i.e. fibrosis
7. Why have my symptoms increased and worsen over the past three weeks? i.e itching, pancreas/gall bladder pain, fatigue, nausea, loss of weight, decrease appetite, indigestion, bloated stomach, constipation

How soon will I be scheduled for:
• Genotype testing
• Liver biopsy
• Liver function tests?

1. How do I obtain copies of my test results?

2. Will there always be a two-month wait for an appointment?

3. What is the average length of time between appointments?

4. Who are/is the contact person(s) if I have questions concerning my treatment or test results?

• What is non infectious hep b?
•
• Do I still have Hep B?
•
• If unknown, will I be tested for it?
•
• If I have hbv and hcv will both be treated concurrently?
•
• Is the tx the same for co infection or different?


The Hep B questions came about after I realized yesterday - Hep B is not such a benign condition as I thought or was lead to believe. I was diagnosis with it in 1984  - the doctors called it "non infectious" hep B and told me to just not take Tylenol or donate blood. Actually, I was hospitalized for a week or more once in 1984 (in active addiction - when I was diagnosis) and again in 1988 (two years drug free) and I have always had problems with my liver throughout my life  - but never thought much of it. I just celebrated 22 years in recovery.  

Something tells me I probably had hep c then and the doctors may have diagnosis me with non B hepatitis vs non infectious hep b. I have read hcv was not identified until 1989. Just a thought who knows – I will find out soon.

[incharge08]

I cut and paste the info on my "new" question list" the information is VERY helpful and concise - thank goodness!  After posting my 'question list' and reading the responses I felt a little stupid - I need to slow down - even more. For - a - minute  after writing out the questions - I felt 'in charge' - just have to keep waiting and see what happens.

I'll let you know how it goes. Thanks for taking the time and effort.

[nygirl7]

If the one doctor knows that you DEFINITELY have hep then they already did run your PCR test - just having antibodies wouldn't mean you definitely had it just that you were exposed to it.

You really have a lot of questions -  most of the stuff the doctor should tell you, you shouldn't have to ask him. It is pretty straightfoward after all and it shouldn't take him more than five minutes to tell you -

He should tell you:
what genotype you are and
what your viral load is,
what the appropriate course of treatment is for this.  
Then he should tell you (if you are not geno 2) that you have to set an appointment for an ultrasound, biopsy and if you are going to treat then opthamologist.  
What your liver enzyme levels are

You might want to ask him (these are important questions!):
Will he prescribe rescue drugs of Procrit or Neupogen if you should need them?
Painkillers? Sleep aids (Ambien)?
Will he prescribe you weight based ribavirin? You want YES
How often will he do PCRs? (ask for 2,4,8,12)
How often will he do CBCs? (as often as possible in the beginning especially)

Scratch the question degree of replication - it doesn't make sense really, the closest answer is that your liver enzymes being high will tell you it's going strong
Scratch the what are the chances of fibrosis are - nobody can tell you that without an ultrasound...it's not possible

I always called the office to get a copy of my test results faxed to me as soon as they were ready (1 day for CBC, Liver Panel, TSH 5 days for PCR).

Sorry I don't know anything about hepb so I can't help you there.  

GOOD LUCK WITH EVERYTHING!

[incharge08]

opps! sorry - this is my 3rd time posting still getting the hang of this. In another post last week I described my situation.

On January 15, 08 - I was dx w/ hep c and told it is replicating / my GI doctor the director of a large GI department for a number of years - informed me there is no doubt I have it and I needed treatment. I assume he is knowledgable about ordering the correct tests to determine if someone has hep c as well as seen hundreds of tests results that confirm hep c in patients. I have confidence he knows what he is talking about.

The GI doctor emailed the hepatologist to get me an appointment as soon as possible - which turned out to be 2 months later - March 5 ( so much for asap)

I have not a clue to what tests I have had - I did not ask - I was more than little shock about the news.

As far as the dr taking time to answer questions I contacted the drs staff and yes I can ask questions - they assured me that during the first appointment - time is spent making sure the patient's needs are met.
Hope that clears things up a little. I will remember next time to give a brief recap of my situation

thanks sfbaygirl for the additional questions - and thanks all for the feedback.

[jmjm530]

So specifically, what tests and/or procedures have you had so far, and what are the results of those tests if you have them.

[jmjm530]

Your list needs severe editing unless you have a couple of hours booked with the doctor. Happy to help you, but could you please first tell us why are you seeing the doctor? Have you been diagnosed with any type of Hepatitis yet, or do you just not feel well?

I'm guessing that perhaps you tested positive for the antibodies with your general practitioner and they now have sent you to a liver specialist. But that's a guess, not really sure based on your post.

[sfbaygirl]

Are you going to ask about tx?  If so I would ask at what stage and genotype he believes in tx'ing Hep C. Ask when he will contact you with the results of the BX and PCR.  Does he beleve in rescue drugs for anemia/neutopenia on tx, or does he believe in cutting the tx drugs. Important questions, if you are going to tx.  

I was dx'ed with being a carrier of Hep B in the 80's. Never had it or any symptoms. My ex did. I now do not have it, whatsoever. Just Hep C.  

I posted a list of questions a few weeks ago to ask the Dr. Probably in the archives. I can look later. I am playing hooky from homework!  

Linda