what questions to ask @1st appointmet HELP!!!

what questions should i ask at initial appt w/ liver specialist.my family dr's assistant said the only #'s she could find along side ofhepititis c was "367414".could that be viralload.?i have been waiting on actually talking to liver specialist since 1st of dec.its already march now my appt. is on the 22nd of this month.i cannot belive i have not been able to see any kind of specialist.
i had an appt with gi doc on feb.20th he acted as though he was god and wouldnt,couldnt answer my questions but the one thing i would like to know if someone has some kind of answer is that high # my viralload the assistant said thats the only number she could find.i am worrying myself to death and my side does hurt and i have been looking at the hep social and hcv posts everyday for basically 4 months now.i am scared cause its as though i cannot get any help.i figured if i have been waiting on this appt for 3 months(made appt along side the one i had on the 20)i didnt realize the gi doc i was going to wouldnt treat me but just referr me.
so any help from any of ya'll is greatly appreciated.---1st doc said meds would cost me around 2000/monthly and i needed to go to doc on the 22nd to try for free trials.
i am worrying so bad-i am 38yr woman i am generally healthy but i have fibromalgia and badly swollen ankles-(fam.dr put me on lasix)

[ppmguy]

     hi,  most gi drs. and hepatologists do refer their patients to infectious disease or treatment dept. nurses(nurse practioners).  but your gi dr. needs to prepare you for a difficult but doable treatment.  you can not, LET ME REPEAT THIS, YOU CAN NOT DO THIS TREATMENT WITHOUT PREPARATION.  if i was you, i would let your dr or his or her staff know you have ?s, you need to discuss.  they need to set your mind at ease.  

the # you mentioned is probably your viral load.  it is not high. i started tx with a v/l of 21 million, and i responded very favorably. undetectable for over a year.  are you with a hmo or a ppo network. if so, iwould call their member services dept and find out their grievance procedure.  you may not be able to get your drs. attention, but a grievance procedure wiil.

              good luck and god bless,       barry

[hrsepwrguy]

Advocate1955 has a list in her journal just follow the link

http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist

[christinatas]

right now lost my blue/cross blue shield no insurance but thats one reason waiting so long is the doc i am seeing will help you get into trials and my fam.dr said if that specialist couldnt help me w/ cost then he would prescribe meds and find free trial drugs.my family doc is treating me for $1.00/a month since i have a serious illness.but its the preparation for all of this.
but THE GI DOC said i could probably be able to wait for better treatment where there's no shots needed.do you know anything about this.he also said i couldnt be depressed at all cause the standard treatment really works on your nerves-i am on zanax right now but as far as support there is none.all of my family lives out of state and i have to work.i guess i will have to just wait for biopsy.i hope that # is VL if you think its low,they just said it was 'PROGRESSING'---I HATE THAT WORD!!!!

[ppmguy]

        ok!!!! good!   you are waiting for your biopsy results.  this will tell you if you have time to wait for new treatments.   \

       i took a look at your profile and see why your dr is hesitant about tx. todays txs. all have interferon and riba.  i have many of the same mental issues.  i have major depression, anxiety both (general and social), and next month i will be screened for bipolar disorder. my twin brother is bipolar.  and i am a worhaholic.  

        wait for your bx. if you have a favorable result(f1 or f2), you can wait. while your waiting, keep reading and learning all you can.  you are your own best advocate.  keep posting and asking questions.   and pretty soon you will be chiming in to help others in need              barry

          

[orphanedhawk]

I have a list which you can see in my profile. Hope it helps.

http://www.medhelp.org/user_journals/show/360204/guestions-for-doctor-for-newbies-to-tx?personal_page_id=17823

[christinatas]

I AM JUST SCARED OF ALREADY my ankles are severely swollen and family dr just thinks i am just after pain meds which i am not.i am in pain-what should i do,BUT I  have  NOT been sceduled for biopsy yet.what would you do when doc would NOT listen to u but i found out why-he told me something personal which i can share w/ you cause nobody knows ya'l--doc said his son was a drug addict-what should i do?????????switch doctors????but doc NOW is the cheap doctor.what should i do?

[orphanedhawk]

Yes, switch docs. We have to be our own advocates and when a doctor dismisses our symptoms as not being real, search for someone more experienced.
I'd look for a top notch hepatologist, in fact that is who I see and am grateful to have such a caring doctor. I'd call local universities with liver transplant centers.
If you don't have insurance, they might offer charity care, assistance for those without insurance.
If you look in my profile there is a list of doctors recommended by our members.

Good luck.

[creewoman]

I am sorry for your difficulties.
Lots of love and knowledge and healing from the priceless MedHelp membersThey are all here for you..

[christinatas]

thank you for the support.i have spent since the 1st of dec. knowing my diagnosis,i was so excited about my feb. 20th appt. w/ gi dr.now i am NOT the least bit excited about appt. w/ hepatologist on the 22nd of this month.i am going to print off the checklist from this website to take with me.it is my family dr that has drug-addicted son i have since had an appt w/ him.he still doesnt believe about the pain in my legs and just prescribed laxis.i even took the man pictures of how my ankles get @night-no belief.i told him i am going to find another family doctor since i like him just fine but i dont believe he knows enough about doctoring to begin with,i have been his patient since last march and when i told him about my late -husband's possible HCV.he said he didnt believe i was infected w/ this and chose not to take me serious.this has totally being eating me up inside and then when i finally drove by his office and had to act like a crazy person just to get HCV test.THEN he called and said bloodwork showed liver enzymes were normal BUT I tested positive  and i was right i had genotype 1A.there's no one to share this with and i am scared i cannot even do tx cause i have to be physically well my marriage is very manic-depressive to say the very least.i know i'll be seeing different dr for tx but fam.dr is the one that said he'd treat for a dollar.oh thanks for listening,you see i dont even get thhe flu and i cannot leave situation i am in.i have extremely bad anxiety problems also

[Advocate1955]

I recommend that you share all of your emotional concerns about fear, anxiety, and depression with your new hepatologist. It will be very important for him/her to make sure that you are emotionally stable enough to be treated for Hep C, since the currently approved meds can cause serious problems with depression and anxiety.
Best wishes with your upcoming appointment with the hepatologist.
Advocate1955

[christinatas]

thanks to all that has responded to my many many concerns,i really appreciate makes me think i am not in this alone.