Help

I have just been diagnosed with Hep C.  My liver counts were normal in December of 2003 and off the rictor scale in August 2004.  I guess I am overwhelmed and do not know what to do or really how to handle this.  I have gone for the quantitative and more extensive blood work and I am waiting for results.  I have a CT of the abdomen next.  I am having a horrible time with this and don't know what to do or how to handle it.  Can someone give me a little insight?  I have never had any blood transfusions, I drink very little (not any more), I have never used any drugs and have been with the same partner for years.  How does this happen and what can I expect.  Currently, in a period of three days, I have gone from being very jaundiced to literally no jaundice at all.  I do not understand it?  Help?

[sofarsogood]

Whoa cowgirl, slow down a bit. If it is a recent diagnosis I suggest you take it easy, follow your doctors advice and take it one day at a time. You have time on your side IMHO. I am not a doctor. Get on the internet and get some good information regarding Hepatitis C. Yes many who get this disease have chronic issues. Many though do very well and can clear the virus without serious issues.

Again, slow down, follow a competant physician's advice and wait. You want to give your body a chance to fight this off. DO NOT drink alcohol at all for a long time. It is time to rest, rest and rest. Others will add to this I am sure. You have a lot of people here who have chronic issues with something called chronic hepatitis C. Many will pray for you I am sure. Have courage and take it one day at a time.

Dale

[cuteus]

have they told you if your illness is in the acute or chronic stage? Have you had a biopsy to determine the level of damage in your liver? an ultrasound is not as accurate a tool as the biopsy. Start getting copies of ALL your tests results and keep them in your own personal folder at home.  This will come in handy many times as you track the progression of your illness. You were diagonsed recently, but perhaps yoiu have been infected for years? Body piercings, tattoos, manicures, pedicures any procedure that involved some blood to blood exchange might account for your infection as well as mother to fetus transmission, thouigh rare.  Try to learn about YOUR condition as much as you can. This is your best weapon against the virus.
abnormal liver enzymes is not a good measure of liver damage.
Learn your genotype and viral load, and then you will be able to assess and determine the next step.
best to you

[Lucky Lou]

Hello,Texasgal,

I was also diagnosed with HEPC about a month ago. I know exactly how you feel. All of us here do. How you contracted it is unimportant. 4-5 million people in the US have HEPC so you/us are not alone. However the more you find out about HEPC the more comfortable you will feel. I am sure of it. You are in the right place and at the right site. There will be more people along that can better answer you medical questions. I just wanted to say hello, welcome and to say do not worry. We all go through what you are going through. Plus you are a Texan! I lived there many years and I know first hand that Texans are tough!! I am sure we will talk again.

Best wishes,

Lou

[Indiana]

Sorry we had to meet you this way. We've all been there. It's really scary when we first find out we have this. Try not to panic. This is usually a VERY slow moving disease. I probably had it for 30 years before I was diagnosed ....and then was cured.
It sounds like your doctor is doing all the proper tests. They will give you the answers you need to make the decisions that are right for you.
As was said...get copies of ALL your bloodwork and tests. If they won't give you copies...get new doctors. Keep them in a notebook and take it with you to all visits. You will understand why later as you use the information and see more doctors.
One of the "classic" signs of chronic HCV are blood counts that "spike up" sometimes and than come right back to normal and stay there until the next spike. That is why most folks don't even know they have this for many years.
Here is a copy of a post written by a fellow hepper with lots of links you can look at while you wait for your next doctors appt......
----------------------------------------------------------------
Hi,
Sorry you're dealing with Hepatitis C, but welcome.
Relax, this is a slow moving disease, and there's a lot you can do. Make sure you have a good doctor (preferably a gastro-enterologist or hepatologist) to work with you. You're going to need this doc for a while, so make sure you have good communications. Good luck, and come back here with your questions and comments.
Here are a great bunch of web sites where you can get informed.
Don't go crazy: the information on these web sites should be the same, so read just enough.

Get the basics on the FAQ's of these general HCV sites:
http://www.liverfoundation.org/ (American Liver Foundation)
http://www.natap.org
http://www.hepnet.com/hepc.html
http://www.cdc.gov/ncidod/diseases/hepatitis/c/fact.htm
http://www.carbonbased.com/cbcblood.htm
http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm
http://www.battlinghepc.com./
http://www.hepcassoc.org/links.html (many links)

http://www.themedicineprogram.com/info.html (helps pay for meds if you can

[hph5477]

Hopefully you know this already but this disease progresses over decades, not months or years.  It's possible to have this for 30 or 40 years and never show symptoms.

A good website to check out for info is www.janis7hepc.com.  You can also do a search on "hepatitis c" and you'll find a lot more information about the disease and current treatments.

Hope you can stay calm and try not to worry.  Try to learn as much about this as you can before talking with your dr and making any decisions regarding treatment.  The more you know, the more able you will be to take control of your own health and destiny.

Good luck to you in your new journey.

[honey1616]

Texas,,,Everyone has left you some really good feedback and this is a great place to come for reassurance when finding out have hep c.  We can all relate so well as we have been there.  Let us know when you get your tests results and try to take one day at a time and I promise you,,,Each day does get better!! Take Care!

[tryingtobebrave]

Hi Texas,
I won't try to give you tech info since I just learned this week myself that I have tested pos for hep/antigens.  I'm awaiting results of PCA test (just done today).  I can however tell you how very much I understand how overwhelmed you feel.  I felt like I was  given a death sentence and my anxiety still freezes me.  This group is wonderful, when you read some of these wonderful people's posts, you feel like they are sitting in your living room with you, holding your hand, comforting you but most importantly bolstering you up against the hurricane of feelings threatening your psyche.  I hope you stay with us and we all stand together.  Learn from our friends at this site, it took me two days to begin to comprehend the meaning of having hep c infection this site helped clear my head.  Hang in there.
Judy

[DonL]

Let me echo what's been said. We all felt that stab of panic when first diagnosed, then later, as we learned more, we realized it didn't mean automatic death sentence. Then there is the fear of a biopsy (bx) which everyone will assure you is nothing to fear, but you will until it is over and you go on to tell the next person not to worry. And then there is the fear of treatment (tx)--will I have such bad side effects (sx) that I will be unable to live my life or even complete tx. And then there are the tests--did I clear, will it recur? Followed by the ever popular--will some crazy person come up and stab me with a HepC infected knife so that I have to repeat all of this again???

I'm not trying to make light of your fear. Rather, I am trying to help you see that you are among friends here. Almost all of us are going through or have gone through what you are. All are here to support you, to provide information, and a place to talk, regardless of what you have to say. As someone said earlier in the year, welcome to our dysfunctional little family. We are sorry that you have to be here, but we're family now.

[GulfCoast]

Hi TexasGal
I don't know what I could add that hasn't been said better in the posts above. I was diagnosed earlier this year and have just started treatment.

I've had this disease since my time in the service which means about 25 years or so. When I first found out I was where you are now. I was stunned and felt like I had just been handed a death sentence.

As I told BeingBrave in an earlier post, this is the worst part, the uncertainty when first dx'ed. You wonder what all the tests would reveal and what the docs will tell you. I remember going from thinking, hey the tests are screwed up, the doc will call me in and say it's all just a big mistake, my bad to going; OH MY GAWD!!!!they're going to say my liver looks like SpongeBob. I'm a goner!!!

Not trying to make light of things, I really did seem to swing from one extreme to another.

But like I said it's the uncertainty that's so bad. As you come to this site and other's and research this, you'll find great comfort in knowing you're not alone. You've joined a group of caring,kind, and sharing people.

This is not a death sentence and in a strange way your life can improve by all this. I have always been a very driven, somewhat workaholic individual and since dx have been taking time to reflect on what's really important in life. After all noone ends up regretting that they didn't spend more time at work. Take this time to reconnect to family, friends, and other loved ones. Learn to live healthy and take care of yourself. Like Ferdinand the bull, take time to smell the flowers and remember you are not alone.
Peace - Gulfcoast

[Sam Hall]

Sorry re the dignosis and hope things go o.k. But also getor be cyberspace smart. Use the net to answer tour real questoins 'specially once your on tx here are those who love nothing better than to play around with the vulnerable. There will be times when you just wnt to lighten up but remember that there are those who will attempt to draw you into more than a simple exchange of info just be a bit netsmart.
S Hall

[Amerabrit]

Scary news to hear, I know.  I, too had never done drugs and although I had heard of hepatitis, I didn't know much about it.  My highest risk factors seem to have been: Electrolysis, manicures/ pedicures and minor surgeries?  My Dr. thinks it was the Electrolysis but I am more inclined to believe it was the Manicure and pedicure as I saw my cuticles bleed?  After all, my Eletrolysis (lady ??) wore a white coat so how could it have been her?
<s>.
Best advice I can give you is to acquire as much info as you can, find a good Dr., and adhere to tx (treatment) protocol as best you can.
I am a 1b, on week 31/48 - PegIntron/Ribavirin and managing SX without too much to compain about. I cleared at week 12 and remain clear.  I know you're scared right now but all the info you need to make rational, educated choices about your dx (diagnosis) and tx is available to you; a lot right here on this forum.
Kindest regards to you and best of luck with your tx choices.

[texasgal]

Not to make light of any of this, but I finally figured out how to use this website and I want to thank all of you that responded to what now seems like very common concerns amongst all of us.  Your responses to my cry for help not only gave me a sense of comfort, but encouraged me to go and find out about this horrible disease.  Don't get me wrong, I am still terrified and confused.  I finally saw my gastro doctor and I guess if you can call this good news, he told me that he does not want to begin any treatment until he gets new blood work in one month.  He believes that my case is "acute" and that since my counts are coming down as fast as they went up, that this very possibly dissapear as quickly as it appeared.  I can only hope and pray that this is the case.  I cannot tell you guys how much this site means to me.  Thanks to all and I will stay in touch.  I promise.