help me understand /for questions to Dr.next appt.

[missy60051]

Hi everyone,
I read everyday, just because it helps me relate.  I'm envious of your knowledge of your disease.  I know nothing other than I have it, how I got it, how to get it and not contract it.  I guess even if my Dr. told me , it probably wouldn't have computed anyway.  I will cut him some slack this time, but I want more information when I go to my next appt.(April 5th). At this appt. their plan is to do labs.
(HCV RNA Quantitative,CBCw/Diff,Liver Profile/Hepatic Panel).  Now at this time I'll be beginning my 5th week.  I don't even know what my viral load is or evern what it should mean to me, have now idea what geno type I am or what that should mean to me.  You see I really don't know much other than I have already been tested for everything and was told 50% of my liver has damage and was told no drinking(ARRRG!) My tx is Peg and riba. Feeling better, but very weak.
I just would like to have a better understanding of where I stand with my disease and what questions I should ask to my Dr.
Thanks
missy

[jmjm530]

For starters, you want to ask your doctor what your genotype is; what stage Liver damage you have per your biopsy report; how long he plans to treat you; and if you don't know, which brand of Peg Interferon you're taking (Pegasys or Peg Intron) and how many milligrams of Ribavirin are you taking a day.

As to your upcoming labs, your HCV RNA Quantitative test should be taken the day before your injection, so if blood will be drawn at your doctor's try and coordinate it like that even if you have to make a second trip for your actual appointment. Alternatively, some of us get prescriptions and have blood drawn from an outside lab. You also want to ask for the most sensitive viral load test possible. "Heptimax" by Quest Diagnostics is a good one to ask for. If possible, have the blood drawn  the day before your fifth shot which will then give you what is considered a week 4 viral load.

Lastly, start asking for copies of all your lab reports as well as copies of all procedure reports like your biopsy, ultrasound, etc. Keep them well organized for your records.

You might also go visit the "Janis and Friends" web site for more basic information on Hep C and treating.

-- Jim

[missy60051]

Yes, most definitely I want copies of all.  It was just too emotional at first to really take charge in the beginning.  I left it up to the doctor to control all decisions and just went with the program.
His plan of treatment is 1 yr., but after 6 mo., if no results from treatment I'll be cut off. Meds are
Ribavirin
2 tabs(400mg.)every morn
3 tabs(600mg.) every night
Pegasys
0.5ml(180mcg)
once weekly
As far as my biopsy there is no cirrhosis ,but scar tissue which I guess would be damage of 50% of my liver.
i will take another look on the janis site, i just want everything to make sense.
thanks

[jmjm530]

Yes, do get copies of all your records including your biopsy report. Also ask your doctor (and check the report) what "stage" liver damage you have and also ask "out of how many stages" since there are a few different symptons. "Damage to 50% of your liver" really doesn't mean much, very inexact.

-- Jim

[missy60051]

thank you.  I just went to the janis site.  Very cool.  I didn't realize how much information it gives.  My poor printer has been so abused in the last couple of weeks.  Very interesting information.  I really hope that 50% he stated isn't too serious.  He seems to be very guarded with me.  He's a gastro Dr. and I've been told by my nurse friends that I should be dealing with a Hepatologist.  Ignorantly  
my faith in which Dr. is better is a toss up if even to 2nd guess.  For now I believe my Dr. is fine.

[wyntre9]

You're not alone in flying-by-the-seat-of-your-pants!

I'm in the same boat, maybe a couple of pages ahead coz I've been treating for 14 weeks, now.

Here's a link to a video MO posted a couple of days ago.

I found it VERY useful in helping me to understand more about the virus.

It's long, 45 minutes, and the first ten minutes is animated microcellular or however you say that stuff.

But the last 35 minutes was great.

Of course, that could be coz I'm more an audial learner than a text learner.  

I understand stuff much better when I HEAR the info AND read it.

Welcome to Forum.

One of the members posted this link the other day to an informative video about HCV.

I thought you might be interested in watching it.

it's long, 45 minutes, and the first 10 minutes are very scientific animated explanations, but then the Dr. comes on and gives an excellent slide and verbal presentation.


http://www.liverfoundation.org/education/webcasts/

[jmjm530]

Yes, everything being equal, better to see a liver specialist (hepatologist). Many gastro's seem a couple of years behind the curve in terms of latest treatment procotols.

-- Jim

[ladybug52]

Sounds like you're doing a good job catching up on info. I just need some help clarifying what you mean. Did you do shot # 4 already and are going to do shot #5 this week? The reason I'm asking is because, like Jim said, you want your viral load test to coincide with shot day of shot #5. It's called a 4 week pcr but is actually a week after the 4th shot. Your meds level will be lowest so you can get a more accurate reading of the viral load. I didn't know if your 5th shot will be on April 5 or if you will be doing shot 5 this week.
good luck, be proactive in your care, take care
Bug

[missy60051]

On april 5th will be the same day I do my 5th shot. sorry I took so long to come back I had some teen agers problems to deal with yea!  riba rage.  I'm tring to behave. LoL

[ladybug52]

No problem, those teenagers take first priority, besides, I just got on! Those kids can drive you to drink except for this tx, right?
Well, good that you do your 5th shot the day of your bloodwork, you're dr sounds right about that. Since you have an extended tx, I would think you are a geno 1. I know they treat for 48 weeks. I am a geno 2 with a 24 week tx. I know 3's usually tx 24 weeks and I'm not sure about 4's. Most common here are 1's 2's and 3's.
Take care, stay calm!
Bug