Aa
advice for newby
I have been recently diagnosed with hep-c. The doc wants to do a liver biopsy and is telling me I am going to have to take interferon and ribovirin or whatever it is they feed us.
He also said it will make me sick for the next year or so and maybe to sick for my work. I feel like he gave me a death sentence and think I am maybe going to last five years or so.
I have been feeling fatigued for years now and they told me it was hypoglycemia. Little did I know.
I didn't go for the biopsy and don't think I want to do the medicine he wants to give me. My cousin died from this and he took the meds and lived almost five years.
I am looking for advice from other people in my boat because I just am not educated enough on the subject.
I mainly am looking for quality of life that I have left.
Thanks for your comments.
He also said it will make me sick for the next year or so and maybe to sick for my work. I feel like he gave me a death sentence and think I am maybe going to last five years or so.
I have been feeling fatigued for years now and they told me it was hypoglycemia. Little did I know.
I didn't go for the biopsy and don't think I want to do the medicine he wants to give me. My cousin died from this and he took the meds and lived almost five years.
I am looking for advice from other people in my boat because I just am not educated enough on the subject.
I mainly am looking for quality of life that I have left.
Thanks for your comments.
Thanks for all taking the time to answer my question and give advice. I have type 1A my doc says and the count was a few million, I cant remember the exact amount. It gives me a lot to think about.
I appreciate all of y'all.
I appreciate all of y'all.
We ALL understand how you feel, believe me.
First off GO DO THE BIOPSY! it is NOT painful like it seems it will be it's just more nervewracking because we can't believe that it won't hurt!
Find out where you stand. Perhaps you have little liver damage and don't NEED to do treatment right now and can wait a while.
If you DO have to do treatment...don't be so scared about being "sick" for a year! I did treatment for 72 weeks and only missed 3 days of work in the whole time. Sometimes it was not easy but other times I even forgot I had the disease (coming in to work really HELPS because it takes your mind off it).
Some people don't really have any problems with the side effects. Mostly in here you find us whining cry babies complaining about stuff but many people don't have that many problems and don't even look for an internet forum to cry on! You could be one of them!
There is too much you don't know about what is goign on with you right now not to pursue it. You really really REALLY want to get this disease before you end up witht liver cancer or in end stage liver failure.
Just pretending it's not there does not make it go away.
That is why it's called The Silent Killer. A lot of people never have any symptoms at all and don't even know they have it until it's too late.
Don't play that game! Get all the facts before you decide anything. You just can't ignore this and hope it disappears. It wont. I wish it would.
First off GO DO THE BIOPSY! it is NOT painful like it seems it will be it's just more nervewracking because we can't believe that it won't hurt!
Find out where you stand. Perhaps you have little liver damage and don't NEED to do treatment right now and can wait a while.
If you DO have to do treatment...don't be so scared about being "sick" for a year! I did treatment for 72 weeks and only missed 3 days of work in the whole time. Sometimes it was not easy but other times I even forgot I had the disease (coming in to work really HELPS because it takes your mind off it).
Some people don't really have any problems with the side effects. Mostly in here you find us whining cry babies complaining about stuff but many people don't have that many problems and don't even look for an internet forum to cry on! You could be one of them!
There is too much you don't know about what is goign on with you right now not to pursue it. You really really REALLY want to get this disease before you end up witht liver cancer or in end stage liver failure.
Just pretending it's not there does not make it go away.
That is why it's called The Silent Killer. A lot of people never have any symptoms at all and don't even know they have it until it's too late.
Don't play that game! Get all the facts before you decide anything. You just can't ignore this and hope it disappears. It wont. I wish it would.
You know, I was in the same frame of mind that you are in. I found out 6 years ago. I had two friends that both passed on. 1 who did not treat at all and kept drinkin, the other who did and then died due to heart problems and complications. I cried for several days 6 years ago! I had a husband and a 6 year old son. Oh My God, I am going to die soon. Biopsy showed damage then. I got stupid and decided not to treat due to side effects and the fact that I just knew I was only going to live another year. Kept drinkin. Anyway, 2 years ago, I split up with husband, divorced in Oct 06 and am now on my own. Huge step for me! Now I have my independence and make my own decisions. My son is my life and I am going to be here for him for many many many years to come!!!
Gallbladder was yanked out at the beginning of this year and biopsy showed further damage. Well, then...... I am going to try it because I can beat this! So, here I am, doing shot #3 tomorrow. Got couple of sides but I am extremely hardheaded (aries) and dont let them get me down. I have been doing everything I want to do... riding motorcycles, shopping, going out to dinner. ****, not much has changed. What was I thinkin? Yeah, somedays, I don't feel my best but I have not missed one day from work!
Soooo, get over the death sentence attitude and rear your ugly little horns, face this thing and JUST DO IT!!! You can and will! You have to be stubborn and determined that it won't beat you! You have found a great place full of information and inspiration! We all are in the same boat together!
Shari
Gallbladder was yanked out at the beginning of this year and biopsy showed further damage. Well, then...... I am going to try it because I can beat this! So, here I am, doing shot #3 tomorrow. Got couple of sides but I am extremely hardheaded (aries) and dont let them get me down. I have been doing everything I want to do... riding motorcycles, shopping, going out to dinner. ****, not much has changed. What was I thinkin? Yeah, somedays, I don't feel my best but I have not missed one day from work!
Soooo, get over the death sentence attitude and rear your ugly little horns, face this thing and JUST DO IT!!! You can and will! You have to be stubborn and determined that it won't beat you! You have found a great place full of information and inspiration! We all are in the same boat together!
Shari
I think bobby said it well all 5 times! I had that problem tonight, it says 'error' so you try to post again, not knowing that it's really posting the comment as it gives you the error message. Anywhooo---
Don't give up before you've even started. Knowledge is power. Empower yourself to make the best decision that's right for you. You can't do what's best for your liver without knowing all the facts.
Don't stick your head in the sand, this isn't a death sentence. All here know how Hep c affects our lives.
Hang in there.
Don't give up before you've even started. Knowledge is power. Empower yourself to make the best decision that's right for you. You can't do what's best for your liver without knowing all the facts.
Don't stick your head in the sand, this isn't a death sentence. All here know how Hep c affects our lives.
Hang in there.
SORRY,????
anyway i had it for 37 years before i decided to tx and my dr said if i did not tx it would take 10 - 15 years before any problems would arise. this is a sloooooow disease for most. very few die from it and lately the odds are getting better by leaps and bounds. RELAX an read all you can. you probably have many years to decide. just educate yourself BEFORE making a move. do not be your worst enemy.
bobby
anyway i had it for 37 years before i decided to tx and my dr said if i did not tx it would take 10 - 15 years before any problems would arise. this is a sloooooow disease for most. very few die from it and lately the odds are getting better by leaps and bounds. RELAX an read all you can. you probably have many years to decide. just educate yourself BEFORE making a move. do not be your worst enemy.
bobby
pretty dramatic but not very realistic.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
Don't give up the ship. I am a newbie and was diagnosed in Feb. I researched, bought books, and went to this forum and Janis friends. On this board I met many great people and forseegood has been a great help.
I started tx yesterday and yes I am scared but the decision is individual to do the tx or not.
Be positive, have the biopsy and educate yourseld. You have ahigher rate of death by an accident than Hep C.
Get all the labs, find a good Doc and become an "expert" on the disease then make your decision.
This forum and Janis friends are wonderful.
Best of luck!
I started tx yesterday and yes I am scared but the decision is individual to do the tx or not.
Be positive, have the biopsy and educate yourseld. You have ahigher rate of death by an accident than Hep C.
Get all the labs, find a good Doc and become an "expert" on the disease then make your decision.
This forum and Janis friends are wonderful.
Best of luck!
pretty dramatic but not very realistic.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
pretty dramatic but not very realistic.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
pretty dramatic but not very realistic.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
pretty dramatic but not very realistic.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
first take a biopsy and see if the hep c has done ANY damage at all? if you are a stage 2 or better you may consider treating NOW. if not you may wait several years for the new generation drugs that will be approved SOON.
like was said, many of us have been in your shoes...I was a bikin, running, granola eatin, veggie-juicin gym-rat, as healthy as can be, when I got this diagnosis...I went to this silly GP and he told me that I had about 3 years and I would be needing a liver transplant, but only half of the people would be getting liver transplants, if that...needless to say, a long ride home...I made a will (which we all should do anyway, but I thought I'd be needing mine soon! lol)
That was seven years ago now, and I still have relatively low liver damage, and excellent labs...But I am going into a trial soon...If I would of believed that doc and not educated myself on the internet (these types of boards - that night I asked some hep c patients in a hep c chat room about this doc's prognosis for me, they told me that doc was all wet, whooo what a relief that was!!!) Go to some good hepatologists, etc...I surely would of died from stress if it weren't for my fact finding!
This dianosis is so disturbing on so many levels...but once you do your biopsy, and get your full labs done, etc...you and your doc will get the info you need to learn how to proceed, step by step...
When you hear the bad circumstances of somebody else (and you have to remember, we are all on our own paths with this, not everyone who has this takes excellent care of themselves, which CAN factor into a bad prognosis for some, you probably know your cousin's lifestyle and if he was taking care of himself...perhaps he was - you don't HAVE to be not taking care of yourself to get a really bad experience with this disease, but it sure helps) So try not to project other people's experiences onto your own, we're all different and have different experiences with this....
I should talk, cause I freaked out for a good six months as well (maybe it does take most people time to adjust to this) but it's not a death sentence for the vast majority...try to take it step by step, and read all you can on the facts of the disease, not just other people's experiences with it...here's a good place to start...hey, remember to laugh and find joy where you can as well - while youre dealing with this...Here's a good place to learn some facts of this disease for the newly diagnosed...best of luck with this...
http://janis7hepc.com/have_you_been_just_diagnosed.htm
That was seven years ago now, and I still have relatively low liver damage, and excellent labs...But I am going into a trial soon...If I would of believed that doc and not educated myself on the internet (these types of boards - that night I asked some hep c patients in a hep c chat room about this doc's prognosis for me, they told me that doc was all wet, whooo what a relief that was!!!) Go to some good hepatologists, etc...I surely would of died from stress if it weren't for my fact finding!
This dianosis is so disturbing on so many levels...but once you do your biopsy, and get your full labs done, etc...you and your doc will get the info you need to learn how to proceed, step by step...
When you hear the bad circumstances of somebody else (and you have to remember, we are all on our own paths with this, not everyone who has this takes excellent care of themselves, which CAN factor into a bad prognosis for some, you probably know your cousin's lifestyle and if he was taking care of himself...perhaps he was - you don't HAVE to be not taking care of yourself to get a really bad experience with this disease, but it sure helps) So try not to project other people's experiences onto your own, we're all different and have different experiences with this....
I should talk, cause I freaked out for a good six months as well (maybe it does take most people time to adjust to this) but it's not a death sentence for the vast majority...try to take it step by step, and read all you can on the facts of the disease, not just other people's experiences with it...here's a good place to start...hey, remember to laugh and find joy where you can as well - while youre dealing with this...Here's a good place to learn some facts of this disease for the newly diagnosed...best of luck with this...
http://janis7hepc.com/have_you_been_just_diagnosed.htm
I hope that you're taking in all the wisdom offered by these fine people before me. Understanding that this issue is brand new to you, it is not uncommon for a response of "doom & gloom." The reality is often times much softer than the harsh imagination of your personal anxieties. Take control of your disease by becoming educated and understanding the myriad of information that will be forthcoming, once you have received all lab reports and the very important biopsy. Please do not delay the biopsy. It is not that big of a deal. It is typically performed as a same-day surgery procedure and takes about 10-15 minutes. The biopsy will assist your doctor in the mutual decsion with you as to the course of treatment recommended. I must admit that it is somewhat unconventional for a treatment to be scheduled befor the biospy report has been read. The glass may really be half full.
i understand how you feel but you really should go for the biopsy. The results might be better than you think. you could have a low level of damage. And the meds can be rough, but your health is more important.
I agree we need to know your genotype and VL. Did you get that info, yet?
Best of luck,
wyntre
I agree we need to know your genotype and VL. Did you get that info, yet?
Best of luck,
wyntre
hold the phone there....
first of all relax. the first weekend after i found out i had myself dead and suffering before i died.
treatment is not easy but as was said about 80 percent of people die of something else. it can sometimes take 20 or 30 years or more just to NOTICE the illness. Most people who have it don't know it......they say 4 million and most are unaware.
i heard of a couple of folks who died with hep c from a friend. they didn't treat, they kept drinking and doing all kinds of drugs including IV. So they escalated EVERYTHING.
I didn't do a liver biopsy but my labs didn't indicate it and i was an acute.
is your doctor a GI or a hepatologist? If you can, go to a hepatologist. it took me three tries to get it right.
the first thing my internist told me was....this will not kill you.
hang in there ...get a good doc......and don't panic.
deb
first of all relax. the first weekend after i found out i had myself dead and suffering before i died.
treatment is not easy but as was said about 80 percent of people die of something else. it can sometimes take 20 or 30 years or more just to NOTICE the illness. Most people who have it don't know it......they say 4 million and most are unaware.
i heard of a couple of folks who died with hep c from a friend. they didn't treat, they kept drinking and doing all kinds of drugs including IV. So they escalated EVERYTHING.
I didn't do a liver biopsy but my labs didn't indicate it and i was an acute.
is your doctor a GI or a hepatologist? If you can, go to a hepatologist. it took me three tries to get it right.
the first thing my internist told me was....this will not kill you.
hang in there ...get a good doc......and don't panic.
deb
Do you have more info you can share? Geno type, Viral load. Your age and how long do you think you have had this virus? The quality of life compared to the quanity of life is a tough choice. Most people on this board have gone the treatment route and results vary. I as anyone else on this board can't make your choices for you because this virus is different for everyone. First I would say don't panic. Hep-c is not a death sentence, It will do some people great harm but on the other hand for the vast Majority they will die with the virus and not because of it. There is a lot of info out there so do your research. I personally decided against treatment and decided with the quality instead of the quanity issue. That was my personal choice and its not an easy one. Good Luck with what you decide.
Ron
Ron
Whoa! Don't start thinking that! Wait until your biopsy. Please don't base your llife expectancy on your cousin. I was very uneducated on Hepatitis C when I started and I thought the same thing. I thought about wills and trust funds and where I wanted my ashes spread. And then I found this forum and realized I had put the cart in front of the horse. People have lived 20 years and more with this disease. To put a timeline on it is kinda hard to do so lets start with the biopsy first and then you can take it from there. Faith is a powerful healer. Good luck and keep us posted.
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