Newly Diagnosed - Scared to Death

[Tallblonde]

I hope someone here can calm the terror in my heart.  I'm a 44 year old professional woman.  I learned on Monday that I've tested posted for the Hepatitis C virus though the results of a routine blood test (required by an insurance company in order to increase my coverage).  At first I assumed it was a mistake, because I knew I that my fertility clinic had done the same test back in March and it was negative.  I immediately called the fertility clinic to re-confirm this.  They assured me that I had taken the test and it was negative.  Whew!

My world changed forever the following day when the fertility clinic called back and said "Upon closer inspection of your lab results, we've come to realize that we somehow missed the fact that you did indeed test positive for HCV."  SIX MONTHS AGO!!!

My liver enzymes are slightly elevated: AST-77; ALT-87 and GGT-49.  I'm waiting for the results of the blood test I had on Friday that will tell me my viral load.  I'm also waiting until October 21 for my first appointment with a specialist at the Cleveland Clinic. I have had a number of symptoms which until this week, I didn't realize were associated with Hep C.  I've had tingling and numbness in my extremties for nearly three years; I've had joint and muscle pain for at least a year; and I've had this persistent itching for about three months.

Not that it matters at this point, but I have NO idea how I've contracted this.  No drug use, no piercings/tattos, no transfusions, no promiscuity, etc.  Can anyone give me ANY hope for my future?  Do I even have a future?

[Infojunkie99]

I don't think I can offer much feedback, however, I'm am in the same frame of mind that you are in. From what I've seen there are a lot of good people on here with lots of support and advise to provide!

[Anne1717]

Hi Boxerbabs - You may want to start a new thread of your own.  Your are attached to a very old thread and may not get the attention you should.  You can cut and paste you conversation using the green  " Post a Question" button at the top.

Best of luck,  Anne

[boxerbabs]

just wanted to say hi to what seems to be a bunch of caring & helpful people.my story is waiting to go on treatments.I am chronic hepatitis c positive for 3 at lease years.Really i think it happened about 25 years ago.But i know i am genotype 1a & i just talked to my nurse into getting a biopsy done about 3 weeks ago.I dont really think she was wanting to have it done yet cause she had went & gotten one of the Drs there to talk to which had been the first one I'd seen & i've been going their since aug 2010.The reason why i say that was the way he had approuched me acting like it wasnt important for me to get one yet.Cause the only thing that has been said to me about treatments is shes wanting me to wait till FDA approves the new medince Telaprevir!Which thats basicly all shes talked about & just keeps saying to wait it should happen anytime now & thats been since aug 2010.But when I told the dr some of my past medical like galbladder being removed in april 07 & that surgen stated then my liver was swollen some & that their was fibrosis all over my insides then the dr had a different look on his face then & asked to examine me I said yes & as soon as he seen my chest he looked at the nurse & said shes got spiders all over her neck ,shoulders & neck.I told him that I had been reporting all my changes to her & that she had a copy of the note from the surgen.He told her to schule me for a biopsy with in next 2 weeks. So that outcome is that im stage 2 & grade 2.which she says aint that bad.Shes wanting me to take the telaprevir,pegylatedinterferon injections &ribavirin pills. But from what i've read about the all this medince i really dont know what to feel.Im starting to not trust her & her motives in away.Plus on top of all this i have servre fibromyalgia,depression already.Which she says i need to get that all under control Im really at a point i dont know what to do!! Any thoughts out there??? Thanks Boxerbabs

[boxerbabs]

HI im a 47 yr old women that found out 3 yrs ago that i was chronic hepatitis C geneotpye 1a.But during all that process the dr & i was thinking something else was wrong with me. I mean shoot they had already taken my galbladder out.But still having the upper right pain,couldnt eat had lost about 30 lbs was very fatigued all the time depression,anxiety as well as sleeplessness and vomitting for over a year & half.Well after the removel of my galbladder that was not the problem.So by the beging of 2008 my dr decided to send me to a rheumatoid arthritis dr.She ended up taking my blood & testing my liver after seeing 6 drs in about 4 monthes she was the first one to check my blood work.Well my blood tested positive for hepatitis c & of course theres an 18 point system for fibromyalgia and as that wasnt bad enough I had all 18 points which is rare.But back to this wonderful forum of

[Anne1717]

Oops - should be GOOD luck

[Anne1717]

Hi and welcome to the group.  You posted on a very old thread and most likely will not get noticed.  To start your own thread, click the green "post a question" button at the top and paste your comment there.

I cannot comment since I don't have the experience with your situation but I am sure others will chime in. God luck to you.

[saving68]

I think i became positive when i was 16 to now i am 43 i failed the interferon treatment about 8 years ago any way i also have HIV im starting to get very sick scheduleing now for my 2nd biobsy the first one they said stage one scaring that was about 10 years ago the worst i geuss starting to get very sick insomnia the worst for more than 10 years very severe it ***** im hopeing for 2nd chance 5 years would feel good to me right now.

[angelle272]

I'm new to this site. i've been on treatment for 4 1/2 months and still work full time. i feel that i've reached the end of my rope. can i get fired if i ask for a leave of absence?

[viman]

I'm so sorry about the news, but as expressed by many people here, you have found the best support website.  You will learn so much by reading the comments and feel so much confident regarding your future decisions. I was in shock for a while when I first found out. I don't know where I got the virus from as well, but you will learn not to dwell on that issue.  Surround yourself by the people who love you and make you smile.  You will get through this and try to keep the positive energy going. We will be here for you.
all the best!!!

[OkieJim]

Welcome,
I'm on Shot #3 Pegasys/Copegus. The wait was worse than the actual TX, SO FAR HAHAHA.  This is a great group of people and they have been where we are going. Feel relieved you found this place and keep in touch.

[Revenire]

Hi there!

My first shot was the worst. Now they are just "the shot" and I don't feel as run-over, just lousy. :-)

You hang in there, you WILL beat this.

Scott

[Tallblonde]

To all my new friends here...

Thank you SO much for taking the time to write to me.  Your comments, suggestions and recommendations are very helpful as I embark on this new journey.  

It's only been a week since this horrible bombshell was dropped on my me.  My husband and I are still trying to cope with accepting this new, scary reality.  We've been so focused on trying to have a baby (I've had five miscarriages during the past two years), and it's hard to put that dream aside to begin carrying this cross. We've never cried so much as we have during the past few days.

But it is reassuring to know that there are others facing this same challenge. I wish I had the time today to respond to each of you who wrote to me.  But I'm sure I'll have time to get to know everyone better during the coming months.  Again, my sincere thanks to all of you for your kindness and compassion.

[MajNeni]

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

[ral]

Great job Galen.

Tallblonde just take it one step at a time we are all scared no matter what are backround

ral

[newgirl]

I am so sorry that you are here, but rest assured that you have found a wonderful group who will surely help you through this.  Right now, try your very hardest to look forward, not backwards, and understand this is a part of your life that you can take control of.  Good luck to you, I will say many prayers that all of you newbies sail through this with ease.

As for everyone else, I apologize for my absence lately...I have been having a hard time and needed to take some time to indulge my mind in other things other than hep c.  I took a leave of absence from work as of last week, hoping that the overwhelming stress that I was feeling will start to dissapate and I can finally feel as if I am taking care of myself.  So, for the next three months I am going to rest and enjoy my life.  I hope this was the right decision!  

I think about all of you everyday, and to Galen... congratulations, you are an inspiration to us all.

[mycoldfeet]

hey, join the club on being scared, we all here in the forum started with that dx of having hep c, But we are all in this boat together. I have Hep C geno 1 the hardest to get rid of but have been clear of the virus since before halfway through the 48 wks. Im on pegasys/rib tx and even though its not a bed of roses ive only missed one day of work ( paramedic) which is where i contracted it. Please use this forum for any questions u might have. Ive learned so much and the people are great, as far as the type of Hep C u have some are easier to cure and the tx not so long. As far as the biopsy goes they give u a choice of drugs or no drugs HA GIVE ME THE DRUGS, i woke up and was out in 3 hours. Left a little red dot and was sore a couple of days dont worry about it, and for goodness sake dont let the drug information sheet scare you, listen to the forum and know the real deal, they tell u on that sheet every crappy thing in the world that can happen to cover their butts but in the small print it says this and that happened in a percentage equal to being hit by a train. Talk to your Dr. and I hope to hear from u  when u know more. bye

[layla]

I am also a 44 year old female professional. I was dx with HCV last year. My story is similar to your on the symptoms. I have now been on tx (treatment) for 8 months. I still work but I do have sx (sides from tx). Some weeks are more difficult than others but I get by. Tx is different for everyone. I feel for me tx will be easier while younger and I am not too sick. I also hate being contagious. The mental part of that for me alone is worth getting rid fo this. Don't beat yourself up to bad on this. You may never know how you got it. Educating yourself will help you a lot. I've just been on this MB for a short time but there is really a lot of good advice here. I also find trying to be positive a big plus. I hope your viral load is low. LL

[coyote81053]

well,i was diagnosed with hepatitis when i was sixteen.i did not heed the doctors warnings. i drank and abused drugs ,as i got older and some what wiser the drug use stoped .but i still drank.now thirty four years later.my liver is revolting,im now sixteen weeks in to my 26 week inter feron, rebtrol treatment  ,so im here to let you know that there is life after
your diagnosed hep c.stop all alcohol in take, how ever small.
my alt was 187 ,ast was 85.my blood test now show no signs of hep.

[Galen]

I am sorry you are feeling bad.  The first 6 to 8 weeks are usually the worst.  Most of us do our injection in the evening along with some tyelenol to hopefully sleep through the worst of it.  There are many possible side effects to tx, and hopefully you will not get too many of them, but you should prepare yourself for it.  The most common ones are fatigue, insominia, headaches, mild fever, rash and itching, and generally feeling poorly.  Going out at night is beyond most of us and the meds can make you more sensitive to the sun.  You'll need to wear sunscreen and dark glasses to protect yourself.
What do I, and most all the people here, think about quitting and "shooting craps"?  Well, last night was shot #48 and I have five more days of ribaviron.  It was a tough year, but the finish line is in sight.  You'll need to do what we all do, and that is to take care of yourself and keep your eyes on the prize.  Hang in there, stay with the forum to ask questions and get support, and take it a day at a time.  You can do it!

[Dirac]

I know exactly how you feel. I got that shock on April 30th
of 2002. I never had blood transfusion, surgery, drugs
or even alcohol. I have no idea how I got this disaster.
Of course I got scared to death then, but I went trhough
a combination therapy of peg-intron and ribavirin for
48 weeks. I just finished this course last thursday. My viral
load went from 1.6 million IU/ml to undetectable level at
weeks 12, 24 and 48. So I finished my treatment and I am
now waiting for the final output. So please don't waste
your time or effort trying to discover how you got the virus
but think positive of how you can get rid of it. There are many
people here who could suvive this and they are now as normal as
any body else. I wish you the best of luck.

[bunkywoo]

As said above, we have all felt as you do right now being newly diagnosed. This is the beginning of your journey in dealing with this and you should feel lucky that you have found this forum now. I didn't find it until a couple of months into treatment (i.e. "tx"). That was over a year ago. After having ultra-sounds, blood tests, a liver biopsy and doing six months of tx with Peg-Intron and Rebetol, I am now waiting for the results of my 6 month post-tx Heptimax test (which measures down to 5 copies of the virus). I was clear at the end of tx and 3 months post-tx. I just wanted you to know that the hep c can be cured.

Sorry that you had to join the club, but try and remain calm and learn all you can about Hep C. This forum is GREAT. No question is a stupid one and you will get first-hand experience here, something you won't get from your doctor.

I wish you both the best.

Laurie

[harley dude]

I think everyone at first thinks the worst, it is just normal to think that way. I was also scared to death when I first learned I had it. I guess the reason is most people really don't know that much about hcv.
Once you start reading about it, going to as many sites as you can to find out all the info about it, you will find it is difinitely not as bad as first expected. You have alot of stuff to do (Lots of blood work, Biopsy, ect. If you drink alcohol stop immediately. Stick around this forum and you'll learn alot and you'll get alot of support and love, (which we all need at times like this). All of your questions will get answered. The tx (which is treatment for short for the hcv), is the major thing that worries everyone, but don't let that bother you, just go into this with a positive attitude and you'll do fine. Remember, read all you can, go see a specialist, and stick around this forum and ask all the questions you want. Good luck, you'll be fine. See Ya around -- HD

[Shell1229]

I too am newly diagnosed after going to a kidney dination procedure for a loved one.  Talk to about a building being dropped on your head.  Oh well, I uess there is a reason for everything.  Took my first shot on Friday @ 7:00am and was pretty sick by 2:00PM - Chills, fever and headache.  Foced myslef last night to go out with a few friends but starting feeling lousy again.  Attempted it again today...went to the pool and within 2 hours had to come home and go to sleep.  This really stinks.....Can't imagine going through this for a full year.  Am contemplating discontinuing treatment and just shoot craps.  I have probably had Hep C for over 20 years and always felt fine.  Any comments?

[Revenire]

Yes, the next step is a biopsy. That is the real only way to determine your liver's health. The biopsy was nearly painless, a slight pressure and then it was over -- quickly. The anticipation was worse.

Viral load does not correlate with liver damage.

My doctors have been very good in treating my tx symptoms -- I suppose it depends on the doctor.

Everyone who is diagnosed goes through the same gamut of emotions it seems: first we feel it is a death sentence, then we learn more about the disease and we come to accept it and fight it. I am going to keep fighting this disease until I beat it; others here have done it and you can too.

Best,

Scott