Follow up

I have made an appointment to get tested. I am as scared as I have ever been about anything. But, after working myself into a wreck over the past ten day, I am now convinced I have every early symptom in the book. Needless to say, I am having a hard time functioning, can barely eat. I am analyzing every pain, taste in my mouth, etc. Basically going insane.

Couple of questions. Assuming my test comes back positive, how do I go about finding a very good doctor who has some experience with this disease? I am only going to a family practitioner for the test, who knows if he can  make a referal.

Second, does anyone have a link or the info regarding the different strains and the effiacy of treatment. I read somewhere that 1 is the most common but least treatable, here in the US. But, I read quite a few people on the board seem to have one. So, if anyone has some insight to offer, I would appreciate it.

And last, if I do have this and have had it for 15 years. I would be interested in hearing other's stories, especially people who have had it for 20plus years. I have two small children and really need some encouragement that I can see them through to adulthood if I have this.

Thanks all
rr

[Revenire]

Welcome.

First off -- get the test results first. A biopsy is the only thing that is going to really tell you where you stand (if you test positive for HCV).

Secondly, having HCV is not a death sentence ... I am beating it and there are plenty, plenty, plenty of others here that have beaten it.

The way you're feeling right now is pretty much the way we all felt and sometimes (when we get setbacks) feel having this disease.

I've had this probably 20 years and had no symptoms I can pin down, ever. Oh, there were times my shoulder and knee joints were sore but that's it! Then came back the blood test and then the biopsy results = STAGE 3. I thought I was a goner. I was writing letters to my wife and children.

Then, thanks to the people (veterans and new folks) here and lots of research/reading, I found out that there is a treatment that works.

Take it one day at a time.

Scott

[Fubarcat]

As best as I can narrow down, I've had this for approxmately 30 years without one single symptom ever.  Didn't know I had it till I went in for a physical to take scuba lessons 2 years ago and my bloodwork came back all screwy at that time.  I must admit, I wasn't the best at going to get annual physicals, so quite frankly, couldn't tell when was the last time I had bloodwork done prior to that that might have given me a clue.  Until I went on these meds, I never felt bad or had any symptoms.  I am a 1B and yes, 1's are the most recalcitrant to treatment.  BUT that is not to say that there aren't an awful lot of successful 1's out there.  Just read some of these old posts and you will see that there are a lot of 1's that are now SVR.  So, take heart - you will have plenty of time to watch your children grow up.  Get tested, follow your doctor's plan, and there is a better than average chance you will be successful.  If you aren't successful the first time around, there are other options available.  And, research is always moving forward, and I expect new drugs to be on the market in the very near future.  Visit this Board for support and hugs whenever you need it.  We'll help get you through it!

[RR]

Thanks all. I am a complete wreck. It would do me good to stay off these sites because I tend to find the worst case scenarios and focus on those for some reason.

It was quite a shock to make the realization that I could be at risk for this. I was waiting for my daughter to finish getting a haircut and I was reading an article about Pam Anderson (of all things) and a light went off in my head.

I had an ex that had a drug problem. He was having tests done on his liver. He must have had this. My whole body went numb. I remember him saying something about having "had" hepatitis, I remember freaking out, and I remeber him saying "No, it wasn't the bad kind"

He wasn't an IV user but cocaine. I figured his liver damage was due to the abuse put on his body by drugs and alcohol. After a little research, I realize this probably was not the case. He would have contracted the Hep C with in 6 years prior to this time--would his liver functions be abnormal by that time?

Though, I had never done drugs with him--I am sure I shared toothbrushes, razors, and even early on (admittedly) snorted some cocaine with him on 5 or 6 occasions, scratched him, etc.

Thanks all. I am having a hard time dealing with a former life coming back to bite me in the...

RR

[GreatBird]

Its GREAT that you are getting tested, but remember its extremely likely that you DON'T have the virus, even if your ex does...also if you did have exposure its possible that you are antibody positive but still virus free (15% of those exposed have the antibodies but not the virus).

I've been married for 22 years, had hepC the whole time and my husband (and kids) don't have it.

Take this one step at a time. Please keep us posted.

[audreywald]

I have had this disease for probably 25 years. When I was diagnosed around 7 years ago, I felt just like you do. I even took a summer off from everything to freak out. Nothing happened that summer ... or the next, or the next or the next.

There are things you need to find out about YOUR case if you have it. Degree of damage, (this can only be done through a biopsy) liver enzymes, what does you doc recommend, how do you feel.

Do you have a really experienced doc who does a lot of hep C? He should be a gastro doc or a liver specialist. The more he knows, the better his recommendations will be to you. If you do not feel really confident in the doc, shop around. Get the best doc you can find.

And finally, don't freak out. Only 3% of those infected will die from hep C. You almost certainly have time and plenty of it.

Ask your doc, what is YOUR prognosis?

[Luke307]

Q ,
God Bless you you're way ahead of yourself. You need to get your test results before you spend any more time worrying yourself  sick.I'm in my 4th month of treatment. Symptoms don't seem to mean much when it comes to this stuff.

For me ' I was having so many weird symptoms that were unexplained that it was almost a blessing to find out that I had something which was potentially curable. I was very, very tired all of the time, and my blood pressure was giving me trouble.

Also, this is the weird part which I'm curious if anybody else here has had; my arms started becoming very very weak and painful and I actually broke a tendon in my arm which was a little strange. Also my arms would fall asleep and constantly  wake me at night?
Anyway some have no symtoms (symptoms) ever and have it.
Good luck and God Bless
Luke

[Indiana]

LEAST TREATABLE???????? HAHAHAHAHAHAHAHAHAHAHA
Lets talk about THAT.

It it unusual for hcv to show symptoms. At least early on. it normally takes about 20 years for that. It's easy to blame it for all our general problems though. Get your tests and we'll take it from there.
I WAS a type 1B.
Don't panic!
I HAD HCV for at least 30 years....(my best guess). I had NO symptoms. I had NO biopsy. I did 50 weels of Peg/Imtron and Riba combo tx(treatment). I AM CLEAR. I HAVE BEATEN THE DRAGON!!!!!! And so can MANY others who have this. HCV is NOT an immediate death sentence. You are doing the right things now. Keep moving forward. You need to get all the initial tests and see just what you're dealing with here.
Get copies of ALL your blood tests and keep them in a file at your home. These will be usefull later on. Come back and tell us the results and we can help you.
Type 1's can't be cleared??  ****!!! LOOK AT ME!!!!!!!!!
hahahahahahahahahahaha
It CAN be done! Ya just gotta look The Dragon right in the eye and spit in it! NO FEAR BABY! THIS CAN BE DONE!!!!!!!!

[Revenire]

An ultrasound can show a lot of things but not the level of fibrosis (my ultrasounds look totally normal but I was biopsied at Stage 3).

http://www.learn-about-cirrhosis.com/html/diagnosis-and-testing.php3

"An ultrasound uses high-frequency sound to construct a picture of organs, blood vessels and internal organs. Ultrasound is often used to look for gallstones, determine areas of scar tissue, and examine the size of an organ." -- so it can 'see' certain things but not really give the most accurate picture. Only a biopsy can do that.

The newer PET scan shows more but still won't show the degree of fibrosis or cirrhosis.

http://www.falange.demon.co.uk/explain-petscan.htm

My doctor uses the ultrasound to look for abnormalities that would indicate HCC -- but then he would have to do CT scans, PET scans and other tests to diagnose HCC.

[Luke307]

Q sorry I almost forgot to mention (brain fog)that my treatment seems to be working and I had most every negative indicator . Viral load very high, wrong genotype 1a,  high iron and I've most certainly had it for thirty years. You'll be fine.

[honey1616]

Hi Dallas,,,Our doctor only does biopsies if there is something that shows up from other tests that maybe leading to liver damage or if you decided not to treat, then he would want you to definitely biopsy.  He said since we are both 1's, we need to treat and try to get rid of the virus so that is pretty much it in a nutshell. And of course at the time, 1 shock, 2 shock and honestly didn't want anymore shocks for at least now. :)

[honey1616]

I know you said you had no biopsy and I was just wondering now that you have been clear for over a year.  Would you ever have an occassional drink or social drink or did you never drink before?  I would like to know your thoughts on this because alot of people seem to think if you have no biopsy...then you have no idea on condition of your liver.

[RR]

Thanks all. I really have appreciated the posts, information and kindness.

Tomorrow is the day. Test day that is. Please say a prayer for me.

rr

[Indiana]

N2cats........I have been clear for just over a year. I am DONE.I will not test again. If you are clear for over a year with no meds then it's over. Thew latest thinking is that those who do show infection after that is probably due to a Re-infection and not the original HCV. I WAS a type 1b, 850,000 load, probably had it for 30-40 years, and I'm 52(I think).
Honey....My thoughts on drinking are as follows. It is NOT ok to drink on tx. I have never moved on this opinion. I was a BIG party person in my youth. I cruised down that path for maybe 15 years. I slowed down to "normal" after my kids came along. Now...once I found out I had HCV I stopped drinking completely. I DO like my beer, but I like livin a whole LOT more. It is just plain stupid to drink while you have HCV. After I was all done I stayed a "good boy" waiting for my 6 month test. Once it showed that I was clear I had my first beer in years. It KICKED MY A$$! ONE beer and I was looped! I was trying to bowl too! It was really funny when I let the ball go on the backstroke and almost killed "The Warden"(my wife). Anyways, I started to have the occasional beer after that. I now drink whenever I choose to but I am not the party animal or anything. Since my HCV is gone I can live my life like any other "normal" person. Unless you are at chirrosis (cirrhosis) levels then the liver will repair itself once the virus is gone. I figure mine has done that. Think about it.....do "normal" folks that don't have liver disease get biopsies after a time to decide if it's ok for them to drink??....No, they don't. I now consider myself to be one of them there "normal" folks again.
These are just my personal thoughts and are based on my personal opinion of my own situation and condition. These opinions should NOT be taken as any kind of recommendation for anyone else. We are ALL different and have differences in our conditions. This is just what I believe is ok for me.

[Indiana]

N2cats........I have been clear for just over a year. I am DONE.I will not test again. If you are clear for over a year with no meds then it's over. Thew latest thinking is that those who do show infection after that is probably due to a Re-infection and not the original HCV. I WAS a type 1b, 850,000 load, probably had it for 30-40 years, and I'm 52(I think).
Honey....My thoughts on drinking are as follows. It is NOT ok to drink on tx. I have never moved on this opinion. I was a BIG party person in my youth. I cruised down that path for maybe 15 years. I slowed down to "normal" after my kids came along. Now...once I found out I had HCV I stopped drinking completely. I DO like my beer, but I like livin a whole LOT more. It is just plain stupid to drink while you have HCV. After I was all done I stayed a "good boy" waiting for my 6 month test. Once it showed that I was clear I had my first beer in years. It KICKED MY A$$! ONE beer and I was looped! I was trying to bowl too! It was really funny when I let the ball go on the backstroke and almost killed "The Warden"(my wife). Anyways, I started to have the occasional beer after that. I now drink whenever I choose to but I am not the party animal or anything. Since my HCV is gone I can live my life like any other "normal" person. Unless you are at chirrosis (cirrhosis) levels then the liver will repair itself once the virus is gone. I figure mine has done that. Think about it.....do "normal" folks that don't have liver disease get biopsies after a time to decide if it's ok for them to drink??....No, they don't. I now consider myself to be one of them there "normal" folks again.
These are just my personal thoughts and are based on my personal opinion of my own situation and condition. These opinions should NOT be taken as any kind of recommendation for anyone else. We are ALL different and have differences in our conditions. This is just what I believe is ok for me.

[honey1616]

Yeah I totally agree about drinking once you actually find out you have it and of course on tx..is just plain stupid.  However, I for one never had a biopsy either and by all my blood work being totally normal, ultrasound normal enzymes always normal...I'm thinking I have never been sick with this and of course since everything is normal...my liver must have none to minimal damage right?  Then I read a posting hmmmm I think yesterday from Revenire saying all his tests were ok also and not sick but his biopsy showed a 3 so that kinda threw me I guess.

[n2cats15]

Congratulations on clearing the beast!  How long have you been clear?  I am a 1A with viral load of 850,000.  I am 7 1/2/48.  Thanx for the encouraging words!

[LvdByGod]

honey,  are you hmo? just curious they try to get out of as much as they can, referals that is. biopsy is expensive but standard care and important so we know where are liver is at now.

indi,   i slightly disagree with the idea that drinking after tx is definitley ok. i know your speaking for yourself. but, after all the care you gave to me, i felt i should mention, that it depends on what your liver looks like. my mom died years after she stopped drinking cause her liver "kept" dieing anyway and she never had hepc only fibrosis due to past drinking. so our livers do not always repare themselves. we have to help them sometimes. my moms disease continued after stopping drinking just becaue she was fat. that alone was enough to keep the liver in the decay mode. so our livers are funny things not necessarily predictable. my thoughts, sandi

you know i loves ya man!!!

[honey1616]

No, I'm not HMO and that is the whole thing that is crazy.  We have excellent insurance as we go to hospital and everything is paid 100%.  Our drs visit is co-pay 15.00 and all of our prescriptions are only 2.00 so can't complain on that.  If I definitely wanted both of us to have a biopsy at this point...it wouldn't be a problem.  I just think at this point since we are both on tx...I will wait and see how that goes for us and then address the biopsy later.

[honey1616]

Sorry...I am losing it haha  Yes it is HMO through my husbands work but...you don't have to do the referral thing and when you said hmo in the beginning...For some reason I was thinking some other kind of insurance totally.  hahahaha Brain Fog to say the least!

[cindee]

I saw your question about the biopsy. My doctor said I didn't need one because my viral load was way up there. It was either 16 or 18 million. I knew from the start it was very high, after I had my 1st blood test and went back to my liver doctor, because my nurse took one look @ my test results and her eyes gave it away and then she suddenly left the room! That was my doctors reason for not ordering a biopsy. Take care, talk with you soon. Much love @ many prayers, Cindee