Found out this morning I have hepc geno type 1a

[rhonday]

I was told this morning that I have hepc geno type 1a. I am very afraid. I had a lap done for unrelated issues and I was given a pic of my damaged liver. The doctor that did the lap said that he did not want to do a biospy and sent me to a spec dr. My husband does not have hepc nor do my children. The doc said I have an 80% chance at a 100% cure. I am dumb founded and confused. I am not a drinker. I do not do drugs. I wonder if this is a life long battle or are people really cured? I go to the dr tuesday but I am not sure what for because I do not understand any of this.  I read some on the forum and now I am more afraid. Hair falling out freaky eyebrows. What other things do I have to look forward too? I really feel I need a support system and I hope that I am in the right place.

[bunkey]

My husband just found out he has HCV 1A. We are over here in Guantanamo Bay, Cuba. The hospital here can not treat him so in Sep we can go on a priority list. We are both civilians. First web site I found was nothing but doom and gloom and then We found this web site and we feel so much better. First place that comes up we have to take and I just hope we can find a good doctor.  The doctor here said he could go a year before starting treatment.  He has no symtoms but we figure he has probably had this about 12 years.  For any one that is a 1A do you normally get one shot a week or three.  At $400 a shot plus $10 a pill how do you all live?  We do have Blue Cross Blue Shield. Do most offices let you get on a payment plan? I do not work but my husband works for Department Of Defense.  There is so much we have to learn and this is the best site yet.  Because of your site my husband is taking milk thistle now.  He is in a very good mood now after looking at this site.  When we get back to the states we will know quite a bit about HCV.  Thankyou so much for being there for new people like us.

[MsTigerHawk]

You certainly don't have to do drugs to get Hepatitis C.  The most common causes of it are:

blood transfusions

tatoos, before the law required the use of clean needles each time and clean ink

sharing needles

manicures and pedicures

sharing toothbrush or manicure scissors with an infected person

sharing a razor with an infected person

being a health professional, especially a medic in the armed forces or a lab worker

for further information, you may want to join:
http://groups.Yahoo.com/group/HumorousHeppers

[layla]

Welcome to the forum. It's a great place to get support and information. I know the stories can be scary but we all come here to vent and share so this is what you see here. There are many more doing well and they don't come to forums. Like others suggested get a good doctor. I personally preffered a hepatologist. Make sure to make a list of question for your first visit and also write down the answers because there is so much going on you will forget some of the explanations. It is good to also keep a running tab of questions for you next visit. I was a 1a and did treatment for quite a long time but it did work and I worked full time in a job requiring a lot of travel and long hours so it can be done. It is different for everyone so you will have to see how it is for you. I wish you the best and hope we see you around. LL

[Laika]

Please read my post to bbglenda in the one just above yours.  Lots of info for people beginning treatment.

Laika

[doll face]

You have recieved some very good advise arlready so I will just post you this...... Like cuteus I was also a 1A. Even though we are the hardest to cure, it is possible. I treated twice once for 48 weeks on Pegintron and this last time for 72 weeks on Pegasys. I now show negative for hepatitis C. I belive that the thing that does it for us 1As is the extended time on tx. I would talk to my doctor if I were you about extended treatment time and also make sure that he is willing to give you the preventive meds for low blood counts like procrit and neupogen (if needed) instead of cutting your dosage.

You have come to the right place for help.Sorry that you HAD to find us but glad that you did. Good Luck to you. Keep your eye on the goal.
Kim

[rhonday]

My husband and children have been tested. They are neg. My dr wants a biospy. Thank you to everyone who has posted so far. My husband was reading with me and said this is great I was already and oddball so I should be just fine. I enjoy the great sense of humor that comes here from everyone. I will keep reading.

[LvdByGod!]

oh my gosh we are really freaking people out with these treatment stories...please understand that we are all slightly crazy...and have nothing else to do but talk about our freaky eyebrows...

be assured that the best thing to do right now is go on the treatment for the hep c and not worry too much about the side effects of treatment...that is certainly not the thing to concern yourself with...it is the liver disease that is the killer...the side effects to the tx are just side effects...they are not that bad compared to what liver damage can do to us...especially if our livers are in bad shape... if bad, we must try to treat it or we will be faced someday with having to have a liver transplant or worse...

freaky eyebrows and hair goes back to normal after treatment rashes go away, strength comes back...and hopefully your liver improves too... and the hepc gets killed...you certainly have no reason to think that you won't be one of us who clear this virus! and i pray you will...please come here for support and whining about the side effects of the meds...we will be here for you!!!

sandi

[cuteus]

I was a 1a, treated for 72 wks and so far I seem to be on my way to call it a cure. Many 1a's have been calling in with a negative pcr. there is a cure, in my opinion. get your family tested and inform yourself on hep c so that you can educate others, even your doctor.  
We have fun with the sides, it is the best way to get through them.  So if you read the prep h post, rest assured it does not happen to everyone. If you decide to treat, warn your family of the oddball you might become TEMPORARILY.

[Laika]

Welcome to the forum.  Yes indeed...educate yourself.  The more personal responsibility you take for your health, the better off you will be.

It is very important to have the right doctor.  My dr is not a hepatologist, he is a gastroenterologist...BUT, he has specialized in treating hepC for many years and is very knowledgeable.  At the outset, I made sure we were in agreement as to how certain problems would be handled, should they occur.  You do not want a dr who will take you off of treatment or lower your dose of hepC-fighting medications because he isn't up on the protocol.

Come here often, ask lots of questions, and you'll get it right.

Laika

[gr8faith]

Welcome aboard.  Sorry for the reason, but you will learn so much here.

I remember the day I found out I had Hep C.  I got a certified letter in the mail from our local blood donor services.  That was in Nov 03.  I had my biopsy in Jan 04 and started tx Jan 05.  I will do shot 18 of 24 tomorrow night. (I am a 3a)

I was so scared, confused and uneducated about this disease even though I knew 3 people in my circle who have it.  My husband and 3 kids tested neg. (Thank God) I took a year to prepare myself for tx, as my liver damage was minimal. I work full time and have a demanding job, family.  But my work and family are life savers in the support department.

Read everything you can, remember like it was said, the doctors WORK FOR YOU, and drink lots of water.
candy

[gr8faith]

I forgot to add, when I started tx, I bought a 3 ring binder with divider pages and made headings for Labs, Doctor information including after hour call numbers, etc., test results, educational info, resources and journal entries.  I decorated the front of the binder with stickers and also have a section for all perscription information.

Then, I took it to my appt and showed my doctor, the receptionist, and all the nurses.  They loved it.  Asked me to make one for them. They ALWAYS remember me on site (I belong to Kaiser and it is busy all the time) and they return my phone calls within hours, even if it is for the smallest question.  

I guess my point, is that the binder has helped me stay organized, helped me to be recongnized at the doctors office, given me the affirmation of taking charge of my health and I know, years from now, I will look back and read over my journal entries and be glad I can.  

Now I use it for all dr appts, as I have been to the eye doctor, dermatologist, internal, etc. since starting tx.  All I have to do is grab my binder and go.

Not everyone does this I am sure, but it works for me.

[Imagine]

gr8 idea!

[bunkywoo]

Sorry to see you've been diagnosed, but consider yourself lucky in finding this website so early on. In answer to one of your questions about whether people who treat are really cured - the answer is yes - in most of our opinions. I finished treating for 6 months 2 years ago - Peg Intron/Rebetol, and was geno 3A. I just got my blood test results last month and am still negative and liver enzymes and all other blood counts are normal.

Treatment differs for everyone. The beginning of treatment is probably the toughest as your body adjusts to the strong meds. Don't go into treatment with a predisposed idea that you'll be laid up for 24 or 48 weeks. I worked the whole time, granted I did take a few days off, especially in the beginning. Drinking tons of water and exercising is imperative in helping you with the side effects of treatment.

Let me give you some advice right off the bat concerning doctors - remember that they work for you. Always get copies of all blood tests and never feel like you're bothering them if you need to call them for anything. If they make you feel that way - time to find a new doctor.

The things that need to be monitored by your doc are your white and red blood cells and platelets. If they get too low the doc will usually have you either lower your dose, have you skip a dose or 2 or give you another injectible to boost the red or white cells. I made a spreadsheet for myself to monitor my blood levels because doctors do not have the same interest in my situation as I do.

You mentioned that your husband and children don't have Hep C. Have they been tested? I only ask this because you indicate that you just found out you have it. There is a very very low chance of mothers passing onto their children at birth (like 3-5%). If they haven't been tested, would be a good idea just for peace of mind. It's a tenuous situation waiting for the results, but since they most likely are negative probably would be good to know for sure. That goes for your husband as well.

This is a very treatable and very slow moving disease. Take your time in deciding how you want to proceed and don't ever hesitate to ask questions here - it's the sanest place on the planet when you're dealing with this personally.

Good luck!  Laurie

[cigaso]

You will find plenty of support and people with similar problems on this site. I'm on week 7 of treatment for HCV, which is what you have. Remember, eveyone is different and the side effects are different for everyone. I am genotype 1b. I didn't know I had it for over 30 years. The sides I have are mostly being tired. It doesn't matter how you got it, but that you take care of it and get your family behind you for support. Your life will change, but having your family behind you will really help. First get the right doctor who understands Hepatitis C. The more you read here the more you will find people involved with doctors who really don't understand the illness. If you have insurance, try and get an MD who has patients being treated for HCV. Then have your dr refer you to am experienced Hepatologist or GI who has treated patients for HCV. You need to find a doctor who is willing to prescribe a biopsy. That is the only way you will know the real extent of your liver damage. Don't settle for less. As others have said here, don't be concerned with being afraid. It is normal. You will adapt, because you have to. This is a serious ailment, but with the proper care you can beat it. Hope to see on here more often.

[noodlegal]

Sorry to hear that you have this disease.  Rest assured, you are in the right place.  The people on this forum have personal experience and tons of wonderful advice.  I'm new here myself, and don't usually write too much === but I read it all and it has helped me thru this.  I haven't even gotten a chance to post any questions yet as the answers to what I thought of asking about are already here so far.  Read back through recent posts to see all the people like us who are slaying this dragon.  It strengthens my hope and faith that I can too.

Please know that my prayers are with you, as are the prayers of many, many, many others.  

Dee

[Tallblonde]

I'm sorry you're having to deal with this, but you certainly are in the right place for support.  I'm a 1a too -- diagnosed about 18 months ago.  Like you, I was totally freaked out by the news because I didn't fit into any of what's considered "high-risk categories."  But there are plenty of other ways to get this disease, including things like dental procedures, minor surgeries, and even beauty treatments like manicures/pedicures.  In short, places where there's a chance for tainted blood to live on improperly sterlized tools.  

You have A LOT to learn about this disease.  First (and I'm sorry to have to tell you this) genotype 1 does not have an "80 percent chance for a 100 percent cure".  It's more like 50-60 percent.  Genotype 2 and 3 have the better odds for treatment success.

It's very important that you find a good hepatologist who is experienced treating HCV.  He'll most likely want to schedule you for a liver biopsy.  If he doesn't want to do one, say goodbye and keep on looking.  Biopsy is best way to assess what, if any, liver damage you have.

There are some things you can do immediately to protect your liver.  Don't drink, don't smoke, eat healthy, and consider taking milk thistle.  I always recommend drinking a lot of green or white tea (both have anti-viral properties).  If you decide to pursue Interferon/Ribavirin treatment, you'll need to stop taking the milk thistle.  But for now, it can offer your liver some protection.

I remember thinking that I was handed a death sentance 18 months ago.  I have long since shrugged off the fear and my life now is very normal.  Luckily, I have no significant fibrosis or symptoms that affect my quality of life.  For those reason, and many others, I've decided to postpone treatment until different medications come down the pike.  Depending on the results of your biopsy, you may have that option.  But I would strongly encourage you to seek treatment if you're at Stage 2 or higher.  There are many people here who can provide compelling reasons for beginning treatment regardless of what stage you're at.  You should take everything they say into account and decide what's ultimately in your best interest.  There are no easy answers, that's for sure.

Do a lot of homework.  Don't panic.  And remember that many blessings can come from adversity.  You'll be okay.

Susan

[marjak]

Hi,

I'm sorry to hear about your diagnosis.  I know it sucks at first, but you will get throuh it.  My hubby Steve is on month four of tx and his last blood test showed NO detectable virus in his blood.  YEA  He hasn't lost his hair or have weird eyebrows.  He has continued to work.  He says it hasn't been a fraction as bad as he thought it would.  He had developed Diabetes though and we have been dealing with that.

When we first got the news, we spent all weekend on the internet and learned a lot.  Forums like this are great too!

Hang in there.

Marjak