questions for first doc visit

[sonyadawn]

have first dr app. since biopsy and being diagnosed stage 3/4 fibrosis 1a. what questions are most important to ask, and what info should i absolutely have at end of app.

[WriteItDown]

Personally I would bring up the possibility of trying to do a clinical trial to treat with the new triple therapies: adding either a protease or a polymerase inhibitor in with SOC.  As a Geno 1 this will give you a much better chance of clearing, and since you're stage 3-4 you really want to try to get rid of it with the first shot. Ask him if he knows of any good trials, and if not, you could research it on your own.

SOC gives you roughly a 40-50% chance of clearing the virus; the new treatment it'll be more like 65-75% chance... so I would suggest looking into that.

It's great that you're trying to find out as much as possible before your app't.  Hope it goes well!

[jusjames]

good advice from nygirl and justme53,
diet is important but it is also basic stuff dont waste time on basic stuff the internet can tell you , concentrate on stuff already said by nygirl

[justme53]

Ditto on the above info. One thing I would add is to ask how often they will be running blood tests, especially CBC's early on to monitor your hemoglobin. Often you'll get a standing order and give it to the lab so you can cruise in for lab work only.

[nygirl7]

I also wouldn't really worry too much about diet (except for eating healthy as possible) unfortunately on treatment most of us have trouble being hungry and anything we can eat to keep some weight on is better than nothing.

Although, you do want to make sure you take your ribavirin with some fatty product if possible (ie: peanut butter, bacon) as the fat gives something to the riba so you don't just eliminate it right away.  A high serum level of the meds in the first 12 weeks (again) is crucial.

Mostly if I could eat some icecream or a yogurt shake for breakfast I was happy......my doc said just do the best you can and I think that was great advice.  You can't do better than that.

[sonyadawn]

thanks, want to go into visit loaded with info, and leave understanding exactly what my situation is and what options are available. this forum is a great resource.

[nygirl7]

diagnosed stage 3/4 fibrosis 1a

Since you are pretty advanced I would ask him how aggressively he intends to treat this (and most importantly, will you be giving me 'weight based ribavirin').  Riba is especially crucial during the first 12 weeks (while we strive to get to UNDtectible) - having enough of the meds to do this quickly and efficiently is about the best thing you can do and some doctors are still not up to date on the latest studies showing that  the closer to week 4 you are UND the better your odds.

I think that is the one singularly  most important question of them all.  After that PCR schedule, Rescue Meds (Procrit and Neupogen) - things like that. Oh yes and make sure he is going to be giving you "sensitive" tests for the PCR the older ones are NOT good because they don't go down nearly far enough....you want to make sure you know for real when you are UND - otherwise you are basing your entire course of treatment on something that might not be true....that will hurt your odds of successif it happens.

I made sure to keep all my test results in a folder and learned how to read them and had a note book with all my questions with spaces for his answers.....I couldn't remember one thing barely when I left without it.

Good luck!

[newleaf09]

Mine went over all of the tests that were done and explained why each was done.  Your list of medicines for him should have EVERYTHING on it, even things you think are insignificant, like vitamins.  Let him know that you will require copies of all your labs and straighten out if they can be sent to you, saved for the next visit, faxed, picked up by you or whatever.  Having copies of your labs and charting them will make it easy for you to monitor your own progress (you will learn their meaning as you go along).  Get a detailed view of how he plans to treat you.  If there is not a 4 wk. PCR in the plan, request one.  If you are clear by 4 wks of TX it can be a valuable decision making tool.  Ask how he intends to manage low hemoglobin (there are 2 ways: use Procrit or reduce Ribivirin dose; better to keep the dose up if possible).  All I can think of. Others here will have more good suggestions.

[franke566]

Assuming this is your 1st appt. with a Hepatologist I would look him or her in the eyes and say Okay, how are we going to treat this?  Bring a note pad with you.  Bring a list of all your medications.  I'm probably going to ask for a copy of the reports.
Ask about diet.  Do you know what your viral load is?. I would want to know how the doctor is paying attention ie, is he or she pro-active, engaged in your discussion.  I imagine he or she will already have a plan-you need to understand what that plan is.  Talk about diet.  Get with the nurse and ask if they have a diet sheet.  I'm repeating myself, sorry.  Don't do what I did with my 1st Hepatologist and just walk out more confused than when I went in.  Best wishes and good luck. FrankE