Just diagnosed with Hep C - don't know what to expect

[LindyK]

Almost 2 years ago I had sudden onset of a severe headache that lasted about 2weeks until the doc could get it under control.  Then I literally awoke with pain wracking my body and after several weeks of it not going away, my doc ran a lot of tests to rule out bad stuff like lupus, MS. etc.  So on to a Rheumatologist who diagnosed me with fibromyalgia.  So, amongst a lot of drugs, one has been Lortab which was the only thing that kept the pain at bay and allowed me to work.  So I have been taking Lortab this whole time.

About a month ago, my hemaglobin was high so my doc suggested I rid myself of some blood by making a blood donation at the Red Cross.  Low and behold got a letter from them stating that I was positive for Hep C.  Went to the Health Department and got another test done which was also positive.  Looks as if the original dx was incorrect - was never tested for Hep anything!  

My primary provider immediately got me an appointment with an infectious disease doctor (I hear the group is the best in my area).  Have appt with them on Oct 23.  So upon learning all this I immediately tapered off of the Lortabs but I am still wracked with pain, have new symptoms - extreme nausea and I feel like my brain is cotton candy.  My PP tested my ammonia level and it came back at 59.  I've been doing a lot of looking around but there seems to be so many variables surrounding this virus.  

Anyway, if anyone has any words of advice or can help me know what to expect when I see the hepatologist I could really use some help.

[Smokescreen]

I thank you for the words of support and will probably have to draw from that well as things progress. Like I said, I have a sonogram and more bloodwork for tomorrow. Hopefully that will fill in some of the blanks. Waiting and being left to my own imagination is the hardest part so far. Well, one day at a time.

[Kalio1]

I wanted to add that you might get more responses if you post on threads closer to the top of the page but hopefully more people will see your post here and add their input.

[Kalio1]

You did fine posting here. Welcome to the forum. Sorry you ahve Hep C but you found a good support place. I would be so upset at the doctor for "forgetting" to test or tell you but that is over and done now. Obviously if you had known you could have stopped the alcohol but that too is past and can't be undone. I was misdiagnosed and didn't know alcohol was a deadly combo with what I had either. I stopped the day I found out I had HCV and that is the best I can do about it now.
It must be very scary for you especially losing your brother to liver disease and having your brother in low with it. Maybe he could be a source of info and support? Sounds like you are on the right track and getting the proper tests and guidance. the more you learn about it the better. Once you have all the info you need you can begin to think about what to do about it.
Hang in there.

[Smokescreen]

I have just been diagnosed with Hepatitis c. My primary care doctor knew a year ago that I was at the very least exposed to it and failed to tell me until just a few weeks ago. Meantime I'm drinking like there is no tomorrow.I just saw a G.I. doctor who ordered blood work and a sonogram (for tomorrow).They called today and said I had elevated iron levels and my liver enzymes were elevated as well and wants more blood.
I'm kind of scared about all of this as I don't even know enough to ask questions. My brother passed away from hep c and liver disease and I have a brother-in-law who is going through it.
I ran across this forum and thought I'd just ask for some help or at least support. Thanks for taking the time to read my post. Maybe this is what I need right now.
I'm soor, I posted this on the wrong thread. I'm new at thi, so please bear with me.

[NYgirl]

Yes remember that Lortab and other painkillers DO contain acetaminophen meds.....and you really really should not take that many tylenols a day you know?

This treatment is no fun but it is doable./  Good luck.

[FlGuy]

Kalio explained the stuff that the liver doc will cover.  Just to add a bit.  If you visit here you'll get an idea of the things to listen for when you see the doc.  These kind of situations tend to be a big blur sometimes.  Bring a paper and pen and take notes and write down the answers to any questions you come up with.  Make sure you tell him the part about why you went to donate blood in the first place, it could be important.

[Kalio1]

Welcome to the forum. Sorry about the diagnosis, it's a real shocker. We all know the feeling. Then you have to wait what seems like an incredibly long time to get  answers and test results so patience is needed. Try not to worry yourself sick in the meantime. The more you learn about it, the more in control you will feel. there will be lots of decisions to make and you won't have the information you will need to make those decisions until you see your specialist. there are lots of good books and informative sites with HCV info. You found a great support forum. By Oct. 23rd hopefully you will have enough knowledge to ask the right questions at your appt. Do you know your genotype and viral load? That will be first and then a biopsy to check for damage to your liver and a full hepatic panel to check your liver functions. You are right, there are so many variables and differing opinions it is mind boggling. You are doing the right things, getting a good doc familiar with HCV and learning all you can about it is key.
I am on a pain maintenance program due to herniated discs and I continue it to this day. I have been treating a little over a year. I take Vicoprophen which is processed by your kidneys not your liver. I switched when I found out I had HCv from Vicoden. I have been on them since back surgery in 2001. Maybe that would help you.
You didnt mention drinking but be sure not to drink alcohol, it acts like fuel to the virus. Eat well, try to eliminate the "bad" foods, red meat, trans fats, etc. and drink lots of water. Eat lots of fresh fruits and veggies and prepare to hurry up and wait. The good thing about the waiting, it gives you time to learn.

[Penelope1911]

Welcome and I am so sorry to hear you have this horrible disease. I think Honey and GrandOak pretty much covered it.The links GrandOak posted are ones that are very useful. Again, welcome and Blessings to you.

[GrandOak]

If you have not yet been vaccinated, do so for both the A and B strains of Hepatitis.  Your doc should be running a blood test to determine your viral load and genotype.  They will probably also schedule for you to have a liver biopsy.   All combined will help you determine what course of action to take.

A few good links of sites to learn more are:

http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm

http://www.nlm.nih.gov/medlineplus/hepatitisc.html#treatment

http://hepcassoc.org/

http://janis7hepc.com/

http://www.hepfi.org/

For understanding your blood tests:

http://www.labtestsonline.org/understanding/analytes/cbc/glance.html

http://home3.inet.tele.dk/omni/alttest.htm#anion

[honey11]

You are right,,,,not much rhyme or reason to this disease!  After the initial shock of finding out that you have the disease,,,then seeing an expert is the right step.  You will be tested for viral load and a biopsy will be next on line up to see if there is any liver damage.  Also you need to know your genotype.  If you decide to tx,,,geno 1's treat for most part 48 weeks,,,Geno 2 for 24 weeks and Geno 3's same.  With the help of your dr and this forum,,,you will get through this and be fine!
Welcome aboard!