It is allright to feel like you feel as time progresses and you find out more about this disease you will make the decision to not let the dragon (thats a nickname for it ) get you down sure you will go thru a lot of different changes and feelings but you must decide to stay strong mentally and spirtually and take care of your body. worrying about how and when you got this will only make you depressed so say to your self, even though I might have the dragon the dragon will not have me.......... Peace and Blessings
i completely understand how you must feel. I'm 59 was diagnosed in Jan. 08, received a biopsy and turns out I have stage 1 grade 1 genotype 1, so I am doing a little bit of waiting. If you have good insurance, it will be a bit easier to follow up. If not you can look into studies. (I will probably have to look into a study) The first thing the PA told me was this is not a death sentence. Most people die with this virus not from it. However it is not something to fool around with.
There is so much information on this site from healthy lifestyle tips to medical clarifications. There are millions of hep C peops and it seems most of it was contracted before 1991 (I think) when they finally discovered Hep C and were able to test for it.
Just be your own advocate, ask questions, get the best information you can and live a happy life. Wishing you all the best and looking forward to your posts.
M4now
Wow, reading your post made me think I was reading about myself back in April of this year. I, too am a fireman's wife by the way. :)
I had no risks except a transfusion 53 years ago when I was an infant and I was totally shocked and scared when I heard my DX. I can still hear the nurse telling me (by phone) that I have Hep C. She then said: "Try not to be scared but, if it were me, I'd be scared!" That was not a helpful thing to hear and I still, to this day, hear those words from time to time. Needless to say, I have not been back to that office since then -- I switched to a much better doc with a much better nurse. When I first heard I have Hep C I was sure that my husband must have been infected from his fireman duties and then passed it on to me...but that was NOT the case. He is Hep C free (thank God).
I spent many months reading everything I could about Hep C and sites like this were a God-send to me. The more you read, the less fearful you will become. I know that Dec 4 sounds like a long way away but, believe me, it's not. You will be better off by using this time to read and educate yourself so that by the time you see your doc you will be able to better understand what he/she tells you and you will know more questions to ask. You will get through this. We have all been where you are.
Best of luck to you! Keep us posted.
Welcome! You are in the right place for info and support. You can take deep breaths and RELAX. You are not likely in any immediate danger. It is true that progression of disease in HCV usually takes decades. There is no big hurry for the follow-up tests and a decision on treatment options. I think the biggest thing is getting a good hepatologist that you can trust and that you can relate to well.
I have found some basic information helpful at Janis & Friends and also on HCV Advocate. Reading generally breeds as many questions as it answers, but keep going and you'll find you can be knowledgeable enough to be a good self-advocate. Here are some links for the sites I mentioned.
http://www.janis7hepc.com/
http://www.hcvadvocate.org/hepatitis/hepatitis_C.asp#1
Knowledge is power.
Welcome to the forum, I can imagine how you feel. It will pass as you get educated on this disease. You don't have to figure out how you got it b/c that will drive you nuts. lol Just keep learning about it and read the posts that are here, there are alot of ppl just like you and there are even some that are different. We all share the commonality of having HepC. Is that a word, commonality? lol Oh well, anyways you have stumbled onto the best HepC forum ever, in the world. Consider that a sign that things will get better for you. God Bless
So many of us have found out the same way...by accident. I think we are the lucky ones as HCV can progress silently for years and by the time you are symptomatic the damage may have progressed.
FlGuy is right on. You are ahead of the game already. This forum is a source of great information. While you are waiting for the doc appointment, you can learn so much from everyone here. Search the archives. Go over to the Expert Forum and the Hep Social forum. Learn all you can. That way, as you get more information about your individial condition you will be able to make informed decisions about your treatment.
The more you learn, the better you will feel about all this. We have all been through it, and know how it really stinks for you right now, but we are all here for you. So read and ask questions.....and keep us posted :-)
Wish you the best.
Isobella
Believe it or not, you are already a little ahead of the game. You've quickly bypassed the disbelief and denial stages. Further, not having the appoinment unti Dec 4 gives you some time to do some reasearch, learn a little bit more and collect yourself some. You'll find it's not as scary as it seems right now, that comes with more knowledge. Good luck.
oh thanks Mike I thought it was at the top! I just went to look, and came to correct my error! Your the best,
I think your reaction is something we all go through. Fear, anger, why me, am I going to die now?
First breath, it will be ok, there may be some tough times ahead, but so many of us are here and we will support you as best we can. You aren't alone..
i would start a list of questions to ask. To this day I keep a list, I my self have a regular GI, who I like very much. But the choice is always yours.
Learn to advocate for yourself, don't be afraid to speak up! There is a list of acronyms up in the right hand I think it is health questions.
Don't be afraid, most of us have had this for many years. You can get through this.
Best wishes
Deb
The list of "Common Hepatitis C Acronyms' is on the lower right side of this page.
The most important thing is to find a good doctor that specializes in infectious diseases of the liver. These doctors are a further specialization of GI doctors and they are called hepatologists. You can usually find them at any major medical center.
There are many new treatment options that will become available in the next couple of years. They are currently in trials that are necessary to get FDA approval.
You can live a long time with this disease, so don't panic. I lived with it for 46 years before I was finally cured this past year.
There are a lot of esoteric terms used on this forum: tx means the current standard treatment which is interferon and ribaviron. Somewhere on this forum, there is a definition of terms; I hope some other poster will refer you to it.
You have plenty of company here and many of us can help you with questions and support.
Best of luck to you,
Eric
It is normal/typical to feel anger and fear. First of all, you're not alone. After reading here hopefully you will feel the support.
Read and learn. More knowledge of how HCV works will put you more at ease. I was diagnosed in February. I would suggest insisting on a biospy. Learning the health of your liver is important to know before you decide upon when you will treat. I showed little damage, and have decided to wait on treatment. (Perhaps when I'm ready to treat, treatment will be less harsh) "tx" means 'treatment.
So having your biopsy and finding the damage or lack of, you can make better choices. Most people with HCV find out they do not have severe liver disease (although some do). So chances are you are in the majority.
I hope reading here will enable you to release some of your tension. You can make treatment decisions once you have all the information. It is a waiting game - initial doctor visit; order of more labs; the biopsy; and waiting for results. While you wait, take care of your body and mind in preparation for a significant and challenging decision. Good luck.
Jacob