newly diag

[heppat]

me and my mother (promisetobethere)  both just joined this community and we appreciate any support and answers any of u give us.  Im 37 yrs old recently dx with hep c type 1.  Also i have endemetosis, gallbladder stones and 1 kidney(donated the other on a year ago)   My question is my dr (infectious disease dr) has order nothing.  Should i get a gastro dr? and being newly diagnoised shouldnt they be order lots of test like a biopsy or viral load?  I see lots of people talking about that and my has never been mentioned by my dr. and how do u test for that.  Sorry if i sound confused but i am.  One last thing how serious is this disease  Could it kill me?  Also lm extremely tire, have yello eyes, hurt on my right side all the time, and have joint pain, is all this normal? Sorry for so much at once but any help will be appreciated

[sunqueen]

It took me awhile to be on board with the care I was receiving from my GI. I listened hard to the advice I was given here and went to see a hepatologist at a teaching hospital. Now treatment decisions are more collaborative and I feel more comfortable that I'm getting the right care. My GI still writes the scripts and gets the labs, and that works well with the time/distance constraints of traveling to the specialist.

Welcome to the forum. It's all very confusing at first after dx. It gets better.

[jmjm530]

LOL. That is "Hepatologists" not "Herpetologists" I guess that's one of the negatives  of using Firefox's new spell checker. "Hepatologist" is not in the built in dictionary so it's flagged and you end up with a Herpatologist" unless you're paying attention, but who pays attention when the spell checker is supposed to, right?  

[jmjm530]

I completely agree with Peg. Just too many stories here of inexperienced and incompetent Gastro's (GI's or infectious disease specialists. . Ask your doctor for a referral to a liver specialist (hematologist). Herpetologists can usually be found at your larger, teaching hospital. They are better at both evaluation and treatment of Hepatitis C. They also are more in touch (and often run) new drug trials should that option make sense for you. As a genotype 1, they will probably want to do a liver biopsy to see how much liver damage you have. Only after determining the amount of damage (or lack of damage) can you make an educated decision whether it makes sense to treat now or wait for better drugs. You also mention "yellow eyes". Jaundice is often associated with the acute stage of Hep C although there could be other causes. If for some reason you do have acute Hepatitis C, all the more reason to see a heaptologist. The acute protocols are different and a hepatologist would be more on top of those protocols.

All the best,

-- Jim

[heppat]

thanks ill post more after my wed appointmnet   good night to all and thanks

[Trinity4]

See a good hepatologist (liver doctor).  They are the ones that treat those of us with hepc.  A good GI who has treated many many with hepc can be consulted as well.  You need alot of questions answered by a competent doctor. You have other health issues beside hepc. I'm not saying the infectious disease guy isn't good, but a hepatologist can give you the best advise on what options are available to you.  You haven't had a liver biopsy yet so there isn't anyway to know what the health of your liver is.  Yes, you have a much better chance of clearing the virus if you are in the acute stage now but irregardless, I would seek out a liver specialist before considering treatment.  
It's very confusing and terrifying when we find out we have hepc.  There are many things to consider and many things to learn so don't be afraid.  Your frightened because of the unknown, we all are first.  I think if you consult with a specialist, alot of your fears will leave and you'll know what the best course of action is for you.
Good Luck
Trinity

[heppat]

thaanks so much i already feel stronger

[PegOnPeg]

It is my strong suggestion to stay away from a GI for treatment of the hcv..most of the bad experiences and questionable care that I've seen posted here were were with a GI...I had my own experince with one and left him after he diagnosed me.  I knew he was an idiot.  I, too, am G1, with Stage 2-3 fibrosis...I could not afford to mess around with an idiot...

I think I had told your mom that not all doctors graduate at the top of their class...if you're not comfortable with the direction that this guy is taking you, find someone else...get 2nd & 3rd opinions...it's your life...your health, and I hate to say it, but healthcare is not what it used to be..you need to be your own advocate...push, ask questions...you deserve answers.

Seek out a Hepatologist...and your doctors will need to work together on your treatment..you have so much going on...

I'm so sorry to hear of these problems for you...so young...you'll find a strength from within to battle all of this...and you can grab strength from us...we're always here.

Good luck sweetie...

Peg

[heppat]

no im glad you are and we proably arent saying everythig right because im newly diag. and have only seen the dr once

[heppat]

Ive only been to the dr once since diag.  I dont know much at all.  The dr has not mentioned acute, what does that mean and should that be a question i ask wed we i go back

[desrt]

I would definitely have a list of questions in hand next time you visit your doctor. If he can't answer them to your satisfaction, I would definitely consult with a gastroenterologist or a hepatologit if one were available.
Sorry if we overwhelm you with questions, but a lot of your diagnosis doesn't quite mesh.

[heppat]

The dr asked me at my last appointment (1 month ago) if i wanted to do treatment I was scared of the stuiff i had heard and said i wanted to think about it  my next appointment is Wed (mom is going with me) and she thinks the sooner we start treatment the better, she thinks he will go ahead and start it if we say we are ready.  i say theres still so much he hadnt told us yet maybe hes not the dr to oversee this he is an infectios disease dr  but people tell me a gastro dr is better, but at any rate we dont know when treatmnet will start for sure, she just meant what if

[desrt]

Given that you were an organ donor a year ago and you've currently got yellow eyes and right side pain, do you know if you're in acute stage? Any type of time frame for possible exposure?

[Trinity4]

I am confused because your mom had indicated "if you start your treatment next week" and you were a stage 2?