Lots of Questions newly diagnosed

Newly diagnosed and very upset!!!!Went to my gyno a few weeks ago and decided to have the STD tests that I have NEVER had.Been married to the same man for 23 years.Well she brought me and my husband into the room and told me I tested positive for the Hep c  antibody.The only thing i could think of was a tattoo that I got about 6 yrs ago.Now I went to my gastro dr and she ran more tests that will be ready in 10 days and also sent me for an ultrasound.The woman who did my ultrasound said my liver looked good.Is this a good sign?I am full of questions and want to know EVERYTHING>Will I lose my job for this?What if I take the medication and cant work due to side effects? Im just worried about this thing and really need advice and guidance.Im afraid that this thing is worry me to death!!!

[Bill1954]

Hi Cindy,

And welcome to the discussion group. Sorry to hear about your results; they can be unsettling, for sure. Did the doctor explain that positive antibody results aren’t the same as a diagnosis?

A percentage of patients will receive false positive antibody results, and among the true positives, roughly 20% will have cleared the virus spontaneously with their immune response in the initial stages of infection.

It sounds as though the doctor has ordered the ‘HCV RNA by PCR’ test; this will determine whether or not active infection is involved. Good luck with those results; they take 7-10 days to turn around and get back to the GI’s office.

In the meantime, refrain from alcohol use; this is the single best thing you can do until this is straightened out; alcohol increases the rate of scarring, or fibrosis of the liver, and might actually help the virus replicate.

Until these results are available, you might also refrain from sharing toothbrushes, floss, nail clippers, and anything that might transfer your blood to others. Sexual intercourse is a very poor method of transmission; while it might happen, it’s very infrequent. The CDC doesn’t recommend any changes in sexual habits for discordant couples; that it, where one couple is infected, and the other isn’t. It’s *very* unlikely that you got this from your partner; this is from not only studies, but anecdotal stories from here, as well as my personal experiences.

Again, welcome; feel free to ask questions; many of us will have had similar experiences to share with you.

Take care, and good luck--

Bill

[22hamilton]

Yes I can understand your alarm however you are not yet in possession of all the details of your situation. Being antibody positive does not necessarily imply that you have active hep c-only that at some point you have been exposed to the virus.When you have more information you will be able to either relax or at least formulate a plan of action.

You have come through to one of the best forums in the world so you are already on a winner.Keep reading and posting questions. Welcome to you also.

[EyesofBlue55]

Yes she did explain that first test to me.I dont drink alcohol so i guess thats a good thing.Maybe 1 or 2 social drinks a year.....Its waiting on these second sets of tests.II guess this is like testing for Tuburculosis.My skin test came back positive but that doesnt mean I have it.Could a good ultrasound report be good news then?All this is scaring me to death!!!

[EyesofBlue55]

Thanks for the info and welcoming me to the forum.At least I know I can relate to people who have shard the same experiences!!!I dont feel alone now.

[Bill1954]

Hi again, Cindy—

A good U/S scan is always welcome news :o). That tells us that there probably isn’t frank cirrhosis present, no remarkable masses, and that all your parts and pieces are in the right place and flowing correctly.

Our disease progression is gauged by the amount of scarring, or fibrosis that develops over years and most often, decades of infection. The ultra sound scan isn’t very good at determining this; in fact, it’s almost useless at measuring how much damage we’ve developed. Still, it’s nice to know the spleen and liver aren’t swollen, and the portal vein is behaving.

Try not to let this rattle you too much; HCV (hepatitis C virus) is the most common blood-borne illness in north America; nearly four million are infected, and only around 5% will eventually succumb to it. Most of us will die *with* it rather than from it. Problem is, it’s hard to determine with precision who will develop advanced liver disease, and who won’t.

Has the doctor given you any insight to disease management? Treatment and such?

Bill

[EyesofBlue55]

Yes she gave me a booklet to read about the disease,treatment overview,side effects mgmt and support services.The med she would use is Pegasys and Copegus.She explained to me about the differet levels (Genotypes) and how they determine how long you have to take the med.Trust me I had alot of questions for her also.Im just trying to look ahead at my situation since I take a yearly physical for my job in June(I drive a school bus)and they ask about meds you are taking.I would prefer them not to know about this.But I also want to be able to take the physical and dont want to be sick from taking the medicine.I have been told of people being fired from their jobs from getting this ..I work with a lot of people who GOSSIP and really want to keep this confidential!!!

[EyesofBlue55]

My father had hepatitus (hepatitis) C and my brother also had it.He took the same med

[Bill1954]

I agree, I wouldn’t necessarily share this with anyone at work yet; they really don’t have a need to know do they?

As you go forward, one of the tests performed will be the ‘genotype’ test; this describes the strain of HCV you have, if it’s present. Different genotypes respond to treatment differently; for instance genotype 1 requires minimum 48 weeks, while genotype 2 and 3 might get by with 24 weeks.

A good site for general HCV knowledge is Janis and Friends; I’ll link you to their page for newly diagnosed; but remember that you need the follow up test results before you’re officially diagnosed:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

This will get you started; be sure to review the section ‘other HCV information’, located in the right-hand side of the page.

Good luck, and let us know how the test goes—

Bill

[jazzy578]

Hi Cindy,  

I know how you must feel as I am a Special Ed School Teacher.  Because of my extreme tiredness and now taking treatment, I have taken a leave of absence from my teaching position.  Under law, you do not have to tell them why you are requesting the leave of absense. You only need to  submitt a doctors note requesting the LEA for the designated amount of time.  Your doctor does not have to give the diagnosis as this is confidential and protected information.  

Of course, everyone will want to know what is wrong.  I just told them I didn't want to  discuss it because I did not want to  put my students under any stress.  Of course, everyone concluded that I have cancer, but they can think what they want.  I just know that I would have had a horrible backlash from non-informed parents and administrators so the least they know the better.  

Hopefully, your test will come back with good news.  I know this can be life-changing, but as you take it one day at a time, suddenly, things begin to fall into place and begin to make sense.  Take Care--

Jazzy

[EyesofBlue55]

Thank you for the info.I live just south of Atlanta and they are making major changes within the school system because of the economy.They are already talking about laying off bus drivers due to budget cuts.Weve been told if we dont pass our physicals in June that we dont have a job!!!Maybe im jumping the gun here but Ive been doing this kind of work for a long time and dont want to fail the physical because im too fatigued and sick.Plus they ask what meds you are taking.If I dont tell them then they could possibly let me go for failure to disclose.I really dont know what I need to be doing to get myself covered for what might be up the road for me.I live in a very small comunity and I know sooner or later word will get out and people will think all kinds of bad stuff about me.

[jazzy578]

Cindy,  The CDC (Center for Disease Control) says on their website that you should not be fired from any job for having Hep C.  And, additionally, your medical records are confidential and your school district cannot disclose your medical information to anyone.  It is illegal to do so.  I went to a website to  find out legal issues surrounding this issue and they responded back to me with that info.  The site is at:
http: hepcassoc.org.  Maybe they can help you further.  Good luck.

Jazzy

[EyesofBlue55]

Ok I just got a call from my gastro Dr with the results of my ultrasound.She said that my ultrasound looked very good and they didnt see anything but a small spot on my kidney(I have a few stones).Is this a GOOD sign?Im hoping that the answer is yes!!! Havent got the results from the tests that they said would be back in 10 days though.

[Bill1954]

Hi Cindy,

In the context of HCV, a U/S scan can determine lots of things. It can determine if the liver or spleen is enlarged, the diameter as well as flow of the portal vein; it can detect overt surface nodularity that can occur with frank cirrhosis, etc. This is a partial list; I’m sure the scan has other important capabilities. So, a good U/S result is encouraging in some respects.

However, it (ultrasound) can’t distinguish between stages of fibrosis; and this is what we use to determine how far our disease has advanced. A biopsy is the best way of looking at this; has this been mentioned by the doctor yet?

Not all of us benefit from biopsy, either… if you are considering treatment soon regardless of disease progression, a good case could be made to skip the biopsy; whatever fibrosis is present will most likely resolve if your treatment is successful. However, if you plan to wait/postpone treatment, the results can yield powerful information regarding urgency to do therapy. Obviously, late stage fibrosis should be dealt with sooner rather than later.

Here’s an article on biopsy results, including stage and grade of liver disease, if you’d like to look further:

http://janis7hepc.com/home8.htm

Glad to hear you got some good news regarding the scan. Continue to ask questions, and take good care—

Bill

[Trinity4]

Ultrasound shows whether there are any abnormalities or suspicious areas of concern in the liver, spleen, kidneys, etc..  It will show if the liver or spleen are enlarged and in some cases if cirrhosis is present.

As info, my ultrasound was normal but biopsy showed stage 3/4 liver disease.

The PCR results which I'm sure you are waiting for will tell you if the virus is present.  The waiting is the hardest and hopefully the results will be negative.

Trinity

[EyesofBlue55]

Day 10 and Im still waiting on test results.Another question ,I tested positive for TB 6 years ago(skin test latent infection) What are the chances that if I am HepC positive that the meds will activate the TB? I get regular chest x rays and check ups.Im still stressing and just need to VENT ! My family just doesnt understand what im feeling right now and how to handle my situation.I really think they think if we dont talk about this,that it will go away!!!

[EyesofBlue55]

ok  just got my call from the dr.Im confirmed.My levels were elevated so now Im going for a biopsy.Im scared to death!!!Actually im numb from all of this.I dont know what to feel.I need to back to work but dont think I can.......

[Bill1954]

Hi Cindy—

I’m assuming that by elevated levels that you mean the HCV RNA test results were positive; if this is the case, then you indeed have the active virus, and a biopsy might be the next logical step. Sorry to hear of all this; but for the vast majority of us, this is a very survivable, manageable condition. Pain in the @ss, but doable :o).

Did they do a genotype test yet? That might have been ordered with the viral load test; if not, it’s an important piece of info that you want to know pretty quickly; perhaps in advance of the biopsy.

What is your worst fear with all this? We can help you with the big ones, and focus on the little stuff as they come along. Remember that there’s safety in numbers usually; 10’s if not hundreds of thousands of patients have completed treatment for this disease, and the majority of them have come out the other side in one piece. Additionally, depending on biopsy results, treatment might not be your best option at this point, either.

Get the genotype information; that’s a good start, and we’ll go from there.

Hang in there, and try to remember you’re really not any more ill than you were just prior to diagnosis; any thing else is most likely anxiety invoked.

Let us know if we can be of further help, and stay in touch--

Bill

[EyesofBlue55]

Genotype1A.I am going for biopsy on April5. I know this is the hardest one to beat.Im hearing only 38% clear with treatment.But I guess Ill try to have a positive attitude about this whole thing.Im just depressed because Ive NEVER shot drugs or had a blood transfusion,just WHY ME??????

[Bill1954]

Cindy, for what it’s worth, liver biopsy is a relatively painless outpatient procedure; and it can yield very important data. Depending upon results, your need to undergo treatment might not be especially urgent.

There are new drugs currently in late phase clinical trial right now that show promise for genotype 1 patients. These are collectively known as ‘protease inhibitors’; more specifically, the two closest to approval are ‘Teleprevir’ and ‘Boceprevir’. These have an entirely different mechanism than interferon, and while they will initially be used in conjunction with the current drugs, they specifically target the HCV virus, rather than relying on our immune system for the bulk of the work. We hope these will be released sometime in 2011. In clinical trials, they’ve increased the efficacy of interferon-based combo treatment for GT-1 patients from roughly 45% to 75-80%. And, for a select population, they might reduce the duration of Tx from 48 weeks minimum to 24 weeks. Be *sure* to discuss these with your doctor before signing on to an interferon/ribavirin only treatment option.

I was Genotype 1a, with rather advanced fibrosis, as well as having diabetes/insulin resistance. Both of these co-conditions further reduce our chances of IFN based success, but I managed to beat the virus. It took some perseverance, but it’s behind me now. I’m just one of many, by the way…

As far as ‘why me’? Sigh… I don’t know how to answer that. There are percentage of patients that simply don’t share any common risk factors, but somehow developed this disease. Perhaps some day we’ll understand this better; until then, all you can do is play your cards as best you can.

I’m glad you found the forum here; feel free to continue to bounce questions and share your feelings here. It helped me immensely when I was initially diagnosed, and I hope it does the same for you.

If you like, take a peek at the following web page; it’s also located on the right-hand side of this page, in a box entitled ‘most viewed health pages’. It will help you with some of the abbreviations and acronyms used so frequently in here. You might want to print this out, or save a copy to disk:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Good luck as you go forward,

--Bill

[Trinity4]

Cindy,

It takes all of us a while to come to terms when we are first diagnosed.  Such a mixed bag of emotions and so many questions whirling around in our head.

As Bill said, your biopsy will be the tell all test and with any luck you can wait for the newer drugs.  I'm a numbers person and the odds of SVR (cure) are very attractive with the Protease Inhibitors coming on board.

I believe I became infected from a blood transfusion in 1971 but I had another transfusion in 1981 after the birth of my son.  It doesn't matter how any of us got it.  What matters is how we move forward.
People live with hepc for years and years without undergoing antiviral therapy.  We use the term watch and wait for those who choose not to treat immediately because biopsy indicates only mild liver damage.  Lifestyle changes are necessary for those who watch and wait and a few are avoiding alcohol and maintaining a good diet and exercise program.  

Waiting for test results is very difficult.  Patience is a must with this disease because it seems like there is always another test that needs to be done but as time goes on and you learn more about hepc you will not be as frightened and things will make more sense.

You don't have to tell anyone at work that you have hepc.  I never did and I treated for 72 weeks.  Thankfully my staff was thoughtful and courteous enough not to ask what was wrong on bad days.  Work is a good thing, it keeps your mind off the if'.... how....and why.  

My very first conversation on this board was with a long standing member (NYgirl) who read my post about how devastated I was that my biopsy showed late stage 3 fibrosis.  She said it's not the best news in the world but it's not the worst either and a lot of people are in the same boat as you so get going on treatment.  I knew then and there the people on this forum would guide me in the right direction so if you have any questions, fire away because we here for you.

My best to you in the upcoming weeks

Trinity

[Diane12855]

I agree that the waiting is very hard. I first got the news that I had the hep c antibodies in the middle of January. Then got referred to a GI for further evaluation. I've had the blood tests, the biopsy and even been given my prescription for Pegasys and Copegus and now it has been over 3 weeks and I'm still waiting on my insurance company to approve the treatment. I just want to get on with fighting this thing!!!

One good thing about all of the waiting though, you may not have started treatment by the time you have your physical and you won't have to lie about what medications you are on.

[EyesofBlue55]

Please keep me posted on your treatment,maybe you can let me know how long it took the insurance co to approve the treatment.What insurance do you have and are you in the US?Good Luck and hope to hear from you.

Yeah I was thinking that if I can get through my physical the fisrt week of June then ill have 9 weeks that I dont have to worry about the sides of tx.Did your dr put you on an antidepressant?

[Fatigue101]

At first I wanted to start treatment ASAP when I was Diagnosed w/ 1a in Sept. 09
but after a lot of reading I'm not so anxious about making this decision now. I'm very skeptical about even the very small amount of positive experiences that I have read about tx and post tx with SVR. They sound so 180 to 99% of every other other post I've read anywhere. It makes me think they are typed up by some pharmaceutical PR department or something. I'd give it a year if you physically can. Sounds like some new treatment is on the horizon. This sure doesn't sound like something you just "GET" and get rid of. I think it's probably just human nature and everybodies initial reaction.
If you do treatment I wish you the best of luck!

[graceman]

Hi Cindy2955. You're getting a lot of good advice here. Many of your concerns are genuine. I was diagnosed with HepC, Geno Type 1a about 18 months ago. I am now in Treatment week 45 of 48. My results are great. Side effects are rough but could have been worse. Suggestions:
1. There's a link here ( help guys) that defines terms - SVR, GENO, etc.
2. Liver Biopsy a must
3. Knowledgable Doctor a must
4. Determining Geno Type a must
I will pray for you.

[graceman]

I can assure you that I am no pharmaceutical PR person. Telling or advising someone to wait can be dangerous. It really depends on the condtion of their liver, amount of fibrosis, damage stage, etc.The longer you wait, the more difficult it can be to treat.
As far as reults, facts are stubborn things. Statistically, HepC 1a - about 50% chance of good response to TX. Stay the course, 48 weeks, and don't screw around (drugs, drinking) and about 95% NON Relapse rate.

[volvic]

Hi Cindy,
Try and keep positively minded and many like myself manage to work full time. I have been on therapy for 58 weeks  and have not taken one week off in all this time from work.
We all have bad days on tx but our bodies cope and the longer into therapy for most of us means the body gets used to the medications.

[Diane12855]

You asked about my insurance. It is AETNA and it took almost a month but it wasn't because of them. I found out it was because of my doctor's office. First they didn't send all of the labs in, and every time the insurance company tried to contact them it took a few days to get back to them, then last Monday everything was approved but the directions on how the doctor wanted me to take the Riba was unclear and it took the office until Wednesday to get back with them. I'll be starting treatment this coming Friday.... finally.

Yes, I'm on AD because I have a history of depression and have been finding it really hard to deal with my 11 & 13 year olds who both have ADHD during all of this waiting so we figured it would be best to get that started right away.

I have also found a new doctor after finding out that my doctor was only in his office 2 days a week. I live in a small town in SC so lots of our doctors come here 2 days and go to another town for the rest of the week. I found a hepatologist in Charlotte, NC which is less than 30 minutes from my house and is in the office 5 days a week. I figured that would be a lot safer if I were to have any negative side effects.

Just one last thought... I read one of the posts that said that it sounded like there were a lot of pharmaceutical people on here. What the truth is as far as I have seen on this site is that there are some very intelligent people on here who have done lots of research on the virus that has invaded their bodies and are more than willing to share what they have learned with the rest of us. If a person researches a particular subject for months and years they will become an expert even if they don't have a degree from a med school. My advice to you is to read the posts with an open mind, and it won't be long till you know who to believe and who to just "take with a grain of salt".

Good luck in whatever you decide to do.

[nygirl7]

I read one of the posts that said that it sounded like there were a lot of pharmaceutical people on here. "

Just an FYI most of the people on here are long time members who hall underwent treatment and have known each other for many years.  We never try to sell anything or push any new 'concept' except for what has been proven to be effective at curing hep.  So it's pretty easy to tell who has an agenda and who does not.

If you see something that seems too good to be true or is kind of advertisment like (like your doctor has never heard of) then I'd be REALLY leery about it. Just like anyplace else on the internet there are always wolves in sheeps clothes who's only intentiton is to make a buck and they don't care how sick and desperate people are - in fact to them the more desperate the better.

Good luck.

[nygirl7]

I meant 'all' not hall and wolves in sheeps clothing but like always I'm at work and typing as quickly as I can so don't mind my typos.....it's all I can do to post every once in a while and i figure most people understand what I mean. At least the intentions are good :)

PS I have Aetna and they were good (except when I wanted to extend to 72 weeks).  Always make sure you reorder your meds a week BEFORE you run out. That way just in case something does happen (and it does believe me - need a pre-authorization every once in a while, a redipen jams...something comes up) you have a weeks extra meds in the fridge just in case.......it's not that uncommon so it's the best advice.

[EyesofBlue55]

Day 6 had my liver biopsy last Monday and waiting on the results.Im feeling a bit better since starting the anti-depressants.I dont seem to be as tight and worried as I was a few weeks ago.My energy level has also come up!!!Got my garden planted on Sat(didnt think I was going to be able to do that!!!)I read posts and am learning alot about this disease.I dont feel so alone anymore.I am soooo  glad i found this forum!!!I think my dr will be surprized when she sees me and I start spilling what I have learned.I am going to ask about the new drugs that are coming out and maybe I can wait and take those.I sure do like the odds a little better.I want to do this tx ONE time.Will post again when results are in .Love to All cindy

[GSDgirl]

Hi Cindy, You have gotten a ton of great advice and I am glad you are not sounding quite so stressed.  I can't remember if I read anywhere if anyone suggested that you get copies of ALL your test results.  It is much easier to get thyem each visit than trying to get them a year later Plus when specific questions about your labs come up you will need the paperwork in front of you.  You can't always count on the nurse or whoever being correct.

Also be careful and try to read your doc before you mention too much about the internet, most of them look down on us doing our own research although there is a ton of garbage out there.  Good Luck

Denise

[EyesofBlue55]

Ok Im posting again,got my biopsy report this morning.
Geno  1A
Viral Load  10,527,000
Stage 1
Grade 1
very minimal swelling
I guess this is not bad because my doc said that she could monitor me for awhile and not treat now.But I told her no that I wanted to go ahead with treatment.She also said by the time I finish this treatment,that the new drugs should be out and I could do them if the first ones dont work.She says shes pretty confident that I will be ok with the drugs and that she knows Im strong willed and positive.Feedback appreciated muchly!!!!

[katethecatlady]

I got a phone call just over two weeks ago saying i tested positive for hep c. I went to a gastrointestinal specialist my doc referred me to. They say I am in store for alot of testing, and even want me to have a colonoscopy before a biopsy. Is this normal? I guess because my mother had colon cancer? I have no idea what to expect, I just know i feel like something the cat dragged in. I hope your treatments go well, and would like to hear all the details. I agree, the worrying is the worst.

[EyesofBlue55]

I think they are probably testing you(colonoscopy)because you are having some gastro problems and or because you are at risk for colon cancer?I dont think its routine for HCV.
  First  thing i can tell you is if you can find a dr that specializes in Hcv(liver diseases)also known as a hepatologist.You can use a gastro dr but they are not up on all the correct testing,new drugs etc.I have a gastro and when I found out  I had hcv I got a hepatologist.If you live near a big city or can drive to one youll feel in better hands.
  You will do alot of testing-blood work to get your viral load(how many of the little buggers are in your blood)and Genotype(there are different genos of the virus)you will probably get a biopsy of your liver to see if there is any damage and maybe an ultrasound.They will grade and stage your liver damage (if there  is any) and you can decide from there on treatment.
Genotype 1 is the most common in the states and the hardest to treat.The treatment now is shots(interferon)once a week and pills taken several times a day for 24-48 weeks.Your chances of clearing with this tx is 40%.They are getting ready to put more drugs on the market in 2011 that will add another drug and up your chances to 75-80% of clearing.I have mild liver disease so Im waiting.
  Stay on this forum and read and read.You will learn alot!!!!Ive been here 6 months and like you was scared too.You will make friends and learn alot.I get on almost everyday.You will be glad you did!!!!!You can post questions and someone will answer you within minutes!!!  Keep in touch and let us know your status.
Also anytime you have bloodwork tell them you want copies of them.People here will help you to interpret them.   cindy
  

[GSDgirl]

Hi and welcome, a colonoscopy is overdue IMHO with the history in your family.

Your best bet would be to start a new thread (post) with any questions as sometimes posts get buried.  Good Luck

Denise

[EyesofBlue55]

Oh I forgot did they just do an antibody test?Just because you have the antibody test and its positive doesnt mean you have the disease.Some people clear the virus and will also have the antibodies.Another blood test will tell if you have a viral load and its called a RNA by PCR.It tells if you have the virus. keep in touch cindy

[nygirl7]

Kate


Take it one day at a time and wait to see what transpires with your biopsy and liver enzymes levels and such.  We are really hoping that the new meds will be out next year and if you don't have much liver damage and want to you can 'watch and wait' and treat then. Personally I just wanted it out of me at all costs it was bugging me (pardon the bad pun) but it turned out I was already stage 3 liver damage even though I had no idea I had the disease.

Make sure to follow up with all the proper tests......you might be one of the lucky ones who has time to wait if you want but you have to keep on top of what is going on and live a liver healthy lifestyle in the meantime.

Good luck,