just officially diagnosed

[summer7799]

As of today I am officially postitive for hep C. I have been waiting since May to find out if I had a current infection or not. It takes a long time to get all those tests done!! The dr said my viral load is over 6 million. Stil waiting for the results for the genotype. Had my liver ultrasound this morning. Going back to the dr next Monday to go over all the results. Its a relief to finally have an answer as to why I have been feeling so bad these last few months. Im grateful to have this forum as I start this journey!!

[his3707]

Hi and welcome.  Sorry about your diagnosis but, Your in good company here!   It does take a few months to get all the initial testing done.  You have taken a big step forward in being in control of your health.  Keep on top of it  and let us know how you are doing.  Lots of support and wonderful information here
Lydia

[elpasolady]

Hi,
Welcome, and I, too, am sorry for your diagnosis.  I just want to add something about the benefit of possibly waiting.  
I was diagnosed at 39 years old.  I know that I became infected in 1978.  I , like you, was in a tizzy with this diagnosis and what to do with it.  I did not treat at that time as my Dr. felt that because my liver enzymes were normal I had time to wait.We were ready to do a biopsy, but he changed his mind.
Fast forward to 2006.  I had my first biopsy ( at that time i have had HCV for 28 years).  My liver had some mild activity, but nothing serious.  I was going to treat then, but for reasons relating to my doctor at THAT time( I have had a few Dr.s)  I changed my mind.
In hindsight, I am SO grateful that I waited.  I am now 54 yrs old.  Have had this for 33 years, and I still feel really good, not sick a day in my life.  I now take really good care of myself, but for the longest time, let's just say, I did not have very good 'liver' habits.
I am now going to treat,  mainly because of the length of time I have had this virus.  Mostly now, though,  because of the  new triple treatment.  If I had treated back in 2006, my chances of SVR would have been half of what it is now.  
I almost convinced myself to wait even longer for the new drugs that will be coming along in a few years, which will most likely promise a higher success rate with  much fewer nasty side effects.  I will not wait, due to the reason you stated....I don't want it to get worse.  My age is right for that now.  I want to go in to this as healthy as I can, which is now.
My whole point is that if you have a biopsy done, and it shows no damage or minimal damage done, then i would absolutely wait a few years. providing, of course, your doctor is in agreement.  Time was on my side and it very well could be on yours.
It is a tough decision to make, but it is YOURS to make.  I am new here too, but some of these folks are HEP C genius'.  I have learned a lot and you will too.
God bless and good luck
Debbie

[can-do-man]

Hi there, did you get your offical hep-c pin? If not i sell them for 19.95 plus postage. Just kidding............ Postage is included. :)....... Good luck and welcome to the zoo.

cando

[summer7799]

Wow!! Thanks everyone for your responses and support, I feel very welcomed! I am so glad that I am not alone in this. I will definatly be posting with questions along the way. Thanks everyone for your kind words!!

[meakea]

I am also very sorry for your HCV diagnosis but welcome to the HCV club...we are a bunch of good people and you have found a great forum for information.  :)   The good part of being diagnosed now is that you now KNOW that you have HCV so that you can form a plan of attack with your doctor AND an even better part is that there are now much better meds on the market for HCV treatment...MUCH better...if you end up being geno 1.  

There are many people out there that are not as fortunate as you in that they still do not know that they have HCV.  Knowing is priceless even though it's not something we would have chosen to have.

Be sure to follow through with your doctor to find out the status of your liver.  As has been said above, HCV is typically a slow moving disease so you are most likely in good shape as far as your liver, but...there are cases where it causes damage much faster so it's important to keep on top of it.  Not to worry since you are already on top of it by having had your biopsy!!  

[Anne1717]

I am so sorry for your diagnosis.  I know how scary it is, but the people on this forum will help you through it.  Use us and best of luck as you move forward with decisions.

[nicci72]

Sorry to hear about your diagnoses. I was just diagnosed in January and I just started treatment on Thursday. This is a great place to ask question and get great support. Good luck to you.

[Vannh9]

I am also sorry to hear about your recent diagnosis. I think the perspectives here provide great information for you , to help you decide what is the right choice for you. I have tested positive for the RNA PCR test and now have to wait until Mid August to see a specialist and then I  will have to wait as you have for the additional test results to come in. I am 53 and I have probably had this disease for around 30 years....give or take a bit.

As Will stated, I do know that the progression advances as you get older, so hopefully you will have sometime to make a decision. Good Luck ank know that we are here for you!!

Take Care~

Vann

[researchmonkey326]

I was diagnosed in 2007 and I was over 50.  I had very little liver damage and at that time, my genotype,1a, had a low percentage of success for SVR with SOC.  Since then, I have watched my father die of ESLD so that had a lot to do with my decision to treat but it also gave me a good long time to learn what I could about the disease and treatment.  Things have changed drastically in just these four years as far as treatment is concerned.  It was the right decision for me to wait - everyone needs to decide for themselves.  I actually see some of these new trials and wonder if I shouldn't have waited longer but I have just six weeks left and it hasn't killed me yet.  Good luck.

[nomorehepcliz]

I have known for years that I have HCV and just recently decided to treat.  It was a decision made with my doc, who previously said that I should wait for the new triple therapies - he told me years ago that protease inhibitors were coming.  I am grade 1, stage 0, with a family to take care of, and a history of bipolar disease and depression in the family. So, given my health at the time, and my circumstances, we decided to wait.  But, the time is now, and I'm in a study. Not many sx, and I won't find anything out till week 12, including my viral response - arrgghh! everything in my study is blinded, very annoying.

[willbb]

Yes I have treated and was unsuccessful my 1st time....however I am an old guy of 53 . :)  and it is a fact that HCV seems to progress faster in most after the age of 50.

I will try again  hopfully in the fairly near future.

If you were over 50 my opinion to you may have been altered somewhat.

Please don"t get me wrong.I think you should treat .I believe everyone should try to rid themselves of this virus...however my only point was ..if you have a biopsy..and you have no damage(which might very well be the case because of your age) then it at least allows you some options as to" when"

Good luck

Will

[summer7799]

Just curious..have you gone thru treatment or are you waiting?

[willbb]

will be even better ..even possibly with 90 to even 100 % cure rates.
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I must add ..this is strictly my own personal opinion .not based on any clinical data

[willbb]

Well ..personally  I don"t think it is a matter of never wanting to treat,I believe the more important question is ...when.

Yes the meds today are approx.75% successful...however as we speak drug companies are spending literally hundreds of millions of dollars in research to come up with even more drugs...some of which(as we see on the forum here by folks reporting their trial results) will be even better ..even possibly with 90 to even 100 % cure rates. Also it is a very real possibility that in the next few years Interferon will be out of the mix.  and it is a very powerful .often times damaging drug.

My opinion  for you the biopsy would be of crucial importance ..because as you mentioned you are only 34 and there is a very good chance you have no or minimal damage from the virus and would have the luxury of waiting to treat because of what I stated above.

Having said that some people when diagnosed  just want to get going with tx. and it is always a personal desicion ..and should always be influenced by a knowlegable(in HCV treatments)doctors advice.

Best in your desicion...

Will

[summer7799]

Thanks for the info..all of this is so new to me. I will make sure to ask about the biopsy when I see my GI Dr on Monday. Can I ask why anyone would not want to do treatment?? It seems like the chances for success are pretty high. And 6 months of feeling crummy seems like a small price to pay to not have a disease that only gets worse for the rest of your life. Just curios what reasond there are for not treating?? Im 34 and probably have had this about 16 years. Id rather get better now before it gets worse... I need all the advice I can get, thanks!!

[researchmonkey326]

Sorry that it was confirmed. I agree with Will about having as much info as possible before deciding when to treat. You are young so hopefully you do not have a lot of liver damage and you can really think about it and all it entails to be in treatment. I know it's tempting with the new drugs but if you are able to wait maybe there will be meds with less sx in the next few years. Good luck with whatever you decide.

[willbb]

Sorry to hear that it was confirmed about having active HCV infection. The viral load is really not very important at this stage, .other than to gauge how you are doing with treatment..

Your Geno type will be important with regards to the type of treatment you do.If you have Geno type 2 or 3  the standard tx. is the combo of INF/RIBA  .with a usual course of 24 weeks. and approx. 75 -80 % chance of success.
With geno type 1 the chances of success are about the same .however as you know it would entail taking the third drug(Incivek or Victrelis)

You didn"t mention anything about having a biopsy and some doctors are not recommending them ..if in fact your intentions are to treat any way., however my personal opinion on that is...I would definitely want a biopsy done (or at the very least a fibroscan and /or fibrosure blood test ) to ascertain amount of liver damage before  making the desicion of when to treat.

All the best going forward..
Will

[ann61]

Sorry to hear the bad news, but at least now you know what your demon is.  This site is a great resource and there are many really knowledgeable people on here.  Good luck on your journey!