Aa
Newly Diagnosed with Hep C and need lots of information
Hepatitis C diagnosis, geno type 1a, viral load 507,000. What happens now? If I do qualify for inferon, how does that work? How often do I have to go to the doctor after starting treatment? How many times a week is the shot? Please tell me what to expect from here forward.
I have recently diagnosed with "drug induced" hep C. My viral lode is outrageous. I had a biopsy and have no liver damage. I had jaundice, liver enzymes gone way over board. I am to see the specialist on the 29th and get started on interfuron and the other meds. I am scared to death. The drugs have so many side effects.
I have been reading the other posts and see that there is a close group here. The support here appears to be helpful.
If anyone can give me some ideas on what to expect I sould really appreciate it.
I have been reading the other posts and see that there is a close group here. The support here appears to be helpful.
If anyone can give me some ideas on what to expect I sould really appreciate it.
I just had a liver biopsy done on mOnday and today is WEdnesday and Im back at work. The biopsy was nothing with nothing and wasnt given drugs of any kind. They just put a local on my belly and it was over in 1 minute.
I was uncomfortable with shoulder pain and had throbbing in the liver area for one day and that was it. Do not worry about that. That I can promise you.
Bonnie Robin
I was uncomfortable with shoulder pain and had throbbing in the liver area for one day and that was it. Do not worry about that. That I can promise you.
Bonnie Robin
NO BIG WORRIES...
if you are 507.000 you are below the average (800.000) to start the TREATMENT, you are genotype 1A which does not tell you much, but you can check on your results on very important PEACE OF information:
FIBROSIS STAGE ?; if you are FIRBOSIS I, than you don't have to worry much, ussualy it takes 8 years time to change stages, there are 1 to 4 and for is BAD, if you are 2, than ussualy they recommend treatment.
MY CASE as last week:
I'm GENOTYPE 1A-1B (mixed infection), with 1.675.000 (way higher than yours) and FIBROSIS I, just came back from 2 different doctors, one in the US and one very famous one in Brazil and both congratulated me for my conditions, gave me a diet (zero alcohol), NO CHOCOLAT and any kind of fat, and told me "SEE YOU IN THREE YEARS" for another biopsy, NO TREATMENT NEEDED, no medicine REQUIRED.
Good luck, keep in touch if you need any info I can help
if you are 507.000 you are below the average (800.000) to start the TREATMENT, you are genotype 1A which does not tell you much, but you can check on your results on very important PEACE OF information:
FIBROSIS STAGE ?; if you are FIRBOSIS I, than you don't have to worry much, ussualy it takes 8 years time to change stages, there are 1 to 4 and for is BAD, if you are 2, than ussualy they recommend treatment.
MY CASE as last week:
I'm GENOTYPE 1A-1B (mixed infection), with 1.675.000 (way higher than yours) and FIBROSIS I, just came back from 2 different doctors, one in the US and one very famous one in Brazil and both congratulated me for my conditions, gave me a diet (zero alcohol), NO CHOCOLAT and any kind of fat, and told me "SEE YOU IN THREE YEARS" for another biopsy, NO TREATMENT NEEDED, no medicine REQUIRED.
Good luck, keep in touch if you need any info I can help
I am sorry to hear about your diagnosis, but you have come to a great place to start getting information. It seems to me that you should be able to have the liver biopsy done at the same time as your gall bladder surgery.
You won't know about treatment until the biopsy results. Some feel that with a low stage and grade you have the option of waiting before treating ( in hopes of easier and more effective treatments down the road) If you do decide to treat..
Keep in mind as someone said earlier, that everyone is different and that some people tolerate the treatment without many or any sides. It is very individual.
It is natural to have a lot of questions and wondering where/how you contracted the disease is one of them. It may have been as simple as a manicure. The virus lives outside the body, even in dried form, on a surface, for quite a while. I would venture to say that most people don't know exactly how they got it, they only assume how. Share the information with people you feel comfortable with, my experience has shown that the more people you tell the more people will respond by telling you how they know someone else who has it...telling people also helps destigmatize Hep c...secrecy only reinforces the social stigma. Good luck, Su
You won't know about treatment until the biopsy results. Some feel that with a low stage and grade you have the option of waiting before treating ( in hopes of easier and more effective treatments down the road) If you do decide to treat..
Keep in mind as someone said earlier, that everyone is different and that some people tolerate the treatment without many or any sides. It is very individual.
It is natural to have a lot of questions and wondering where/how you contracted the disease is one of them. It may have been as simple as a manicure. The virus lives outside the body, even in dried form, on a surface, for quite a while. I would venture to say that most people don't know exactly how they got it, they only assume how. Share the information with people you feel comfortable with, my experience has shown that the more people you tell the more people will respond by telling you how they know someone else who has it...telling people also helps destigmatize Hep c...secrecy only reinforces the social stigma. Good luck, Su
Thank you for all your thoughtful replies and encouragement. I'm dealing with this a bit better as each day passes. It did sound like a death sentence when I first found out. I have hope now.
How soon after seeing the specialist or getting a biopsy would I begin treatment?
How soon after seeing the specialist or getting a biopsy would I begin treatment?
First, welcome to the forum.
It's understandable you have so many questions and concerns on hearing your diagnosis. Most of us do.
As a genotype 1, the first thing is to find out how much liver damage you have. If you have little or no liver damage, a reasonable approach is not to treat with today's drugs but to wait for newer and better drugs, some of which are now in trial.
To find out how much liver damage you have, they usually do a liver biopsy. You're in the hospital for around 4-5 hours but in most cases do not stay overnight.
My only suggestion is to ask your PCP to refer you to a Hepatologist (liver specialist) as opposed to a Gastroenterologist. Hepatologists are far more knowledgeable both in diagnosis and treatment. Lots of folks here started with Gastros and ended up with hepatologists mid treatment. Best to start off right.
-- Jim
It's understandable you have so many questions and concerns on hearing your diagnosis. Most of us do.
As a genotype 1, the first thing is to find out how much liver damage you have. If you have little or no liver damage, a reasonable approach is not to treat with today's drugs but to wait for newer and better drugs, some of which are now in trial.
To find out how much liver damage you have, they usually do a liver biopsy. You're in the hospital for around 4-5 hours but in most cases do not stay overnight.
My only suggestion is to ask your PCP to refer you to a Hepatologist (liver specialist) as opposed to a Gastroenterologist. Hepatologists are far more knowledgeable both in diagnosis and treatment. Lots of folks here started with Gastros and ended up with hepatologists mid treatment. Best to start off right.
-- Jim
I think what drives me nuts in this is the doctor/nurses seem to keep asking if I know how I caught this. I didn't even know I had it, so how would I know? You know? I'm not a drug user. I've been married to my 2nd husband for 8 years now. I don't sleep around. We still have an awesome relationship.
So, I don't know how this happened. I know I used to donate blood plasma back in the 80's, I got a tattoo in the 80's, and I've gotten medical treatment over the years. I guess it could have happened from any of those. Who knows?
My husband has been very supportive. He was shocked at the news, as was I, but he's being an angel. I couldn't ask for better on that.
I think the problem I have with not working is I carry the medical insurance through my employer for our family. My hubby may have to find another job that offers better insurance if I'm not able to work. And then there are the bills and car payments, that would be a lot for him to deal with alone. I'd rather be able to continue working despite this.
The nurse at the docs office had said my VL was the highest she'd ever seen, but after reading here, I felt much better. It didn't seem so bad after all. And, that tells me that if I were to go ahead and do treatment, I'd have a good shot at sending this into remission. That would be awesome.
I am hoping to find out more about my liver. I do know it is currently inflamed and enlarged. We found that out on an ultrasound. And, I do have some scarring, but I don't know how extensive it is. I guess that's why the biopsy needs to be done.
I'm a bit anxious to find out more so that I can get the treatment underway and put all of this behind me.
So, I don't know how this happened. I know I used to donate blood plasma back in the 80's, I got a tattoo in the 80's, and I've gotten medical treatment over the years. I guess it could have happened from any of those. Who knows?
My husband has been very supportive. He was shocked at the news, as was I, but he's being an angel. I couldn't ask for better on that.
I think the problem I have with not working is I carry the medical insurance through my employer for our family. My hubby may have to find another job that offers better insurance if I'm not able to work. And then there are the bills and car payments, that would be a lot for him to deal with alone. I'd rather be able to continue working despite this.
The nurse at the docs office had said my VL was the highest she'd ever seen, but after reading here, I felt much better. It didn't seem so bad after all. And, that tells me that if I were to go ahead and do treatment, I'd have a good shot at sending this into remission. That would be awesome.
I am hoping to find out more about my liver. I do know it is currently inflamed and enlarged. We found that out on an ultrasound. And, I do have some scarring, but I don't know how extensive it is. I guess that's why the biopsy needs to be done.
I'm a bit anxious to find out more so that I can get the treatment underway and put all of this behind me.
Simply tell your doc and nurses "What does it matter how I got it? I got it and need to know what to do about it! How I got it does not seem to matter on what I should do about it, right?".
I for one might be a bit concerned about a doc who is more concerned about how you became infected. It might be time to look for one who is more interested in helping you decide what to do about it.
A few good sites to learn more are:
http://www.hepfi.org/
http://www.hepatitis-central.com/
http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm
http://hepatitisneighborhood.com/
I for one might be a bit concerned about a doc who is more concerned about how you became infected. It might be time to look for one who is more interested in helping you decide what to do about it.
A few good sites to learn more are:
http://www.hepfi.org/
http://www.hepatitis-central.com/
http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm
http://hepatitisneighborhood.com/
You may want to ask your doc to do a 'fibrosure' blood test before even having a biopsy. This test is very simple, can be done with your other labs. . It is considered accurate on the low end and high end,,,meaning if you have 0 damage or cirhosis, they would consider the test results accurate. Any score that falls in the middle they do not consider accurate. Dr. Afdhal, a leading hepatologist in Boston told me that my 0 test result is considered more accurate than if I had a biopsy. Dr. A told me there was NO need for me to get a biospy because of this result. I am always baffled at why all doctors don't give a fibrosure test right off the bat for everyone. $$$
Try to relax. I know it feels like a death sentence when you are first diagnosed. I am a geno 2b. I feel great, no side effects. Just did my 17th shot. No one knows I am on treatment except for the two I told (my mother and husband of course).I'm just starting to lose some hair, but I have a mop of hair so know one noticed yet,not even my husband when I asked him.
The first shot I felt chills and flu like, but it was no big deal. Some make it seem like the first shot is the end of the world, but some people are drama queens , so keep that in the back of your head at all times.
Hang in there. You'll be fine.
Try to relax. I know it feels like a death sentence when you are first diagnosed. I am a geno 2b. I feel great, no side effects. Just did my 17th shot. No one knows I am on treatment except for the two I told (my mother and husband of course).I'm just starting to lose some hair, but I have a mop of hair so know one noticed yet,not even my husband when I asked him.
The first shot I felt chills and flu like, but it was no big deal. Some make it seem like the first shot is the end of the world, but some people are drama queens , so keep that in the back of your head at all times.
Hang in there. You'll be fine.
Hi, your questions and anxiety are what most of us here had when we were diognosed. The biopsy is very short and usually a quick procedure with only minor sensation for a day or two after. It's usually done with a sedative like valium. Under tx you'll, see the doc and have blood wok done a few times the first month and then less after that. Figure on working and hope that you can handle it ok. It's a one day at a time type of thing. You can probably do it.You can expect to need alot of xtra rest. Tell your close family you'll be needing help but don't advertise it at work. Thats my experience after 2 tx's. Stay close to this forum.for advice and comfort. giddyup
Hi! I'm 1B, VL 643,000, stage 2-3, virus undetectible at week 4 so my Tx has been shortened to 24 weeks... 7 more to go! Yes, the biopsy is important; it will tell you what stage the fibrosis is in your liver. If it's low (<2), you could opt to not treat right now, just live a healthy lifestyle, get lots of exercise, be kind to your liver (NO alcohol) and wait for the new meds to come down the road. With such a low VL, things are looking pretty good for you.
The biopsy isn't bad; don't worry about it. They just keep you in recovery for a few hours to keep an eye on you in case of hemmoraging, which is extremely rare.
You have to not dwell and obsess over the fact that you have HepC; you have it, we have it, and we're dealing with it. Worrying doesn't help! So go out, smell the roses along the way and do what you have to do, and be thankful that it was detected!
The biopsy isn't bad; don't worry about it. They just keep you in recovery for a few hours to keep an eye on you in case of hemmoraging, which is extremely rare.
You have to not dwell and obsess over the fact that you have HepC; you have it, we have it, and we're dealing with it. Worrying doesn't help! So go out, smell the roses along the way and do what you have to do, and be thankful that it was detected!
hi, you have received some very good information so far. as far as the biopsy goes, get it done the same time as your gall bladder surgery. this is the best way to get a biopsy, they will be sure you get a full piece of your liver for most accurate biopsy. good luck
The one thing I've learned, and I'm a relative newbie (just had 5th shot and just diagnosed Feb 1 - I am an acute)...is that it is DIFFERENT for EVERYONE!
Some folks have horrendous problems. Some folks have relatively few or none.
I'm a former marathoner, ran one last year and trained in boxing (no bloodletting, chilluns) and i HAVE beens sick some but it is much less than i thought it would be. I am on a whopping dose of riba (1400) and i have some trouble with mouth and GI tract ulcers. My hemoglobin dropped precipitously (over 3 points in nine days) but it has leveled off. it was very high to begin with (almost 17) but as my doc likes to say "you had a long way to fall". I felt bad during the fall but am better this week. I tend to have more problems healing small cuts and scrapes than i used to. I am still working between 45-55 hours a week at a stressful job. That is as real as I can get in terms of describing how it really is. I am probably the least "drama queen" person you'd meet (remember, marthons and boxing) but yeah, sometimes it is challenging! I did not have a biopsy and wasn't required to get one but this may be due to the acute nature, even though i had horrible liver function tests during the acute illness eight weeks after i had an abdominal surgery. My VL was never higher than 42000.
The good news in all of this is that I was UND at two weeks.
My point is that you won't know until you start. I try not to EXPECT sides even though it is tough not to want to watch for them. I had a dozen ulcers in my mouth for a week before i figured something was wrong, it mostly felt like i was biting my tongue. Attitude is part of it. Fear is part of it. Overnoticing symptoms (or undernoticing them) is part of it. Find a middle ground balance place if you can.
Also if it helps I was diagnosed just before a weekend and spent the weekend wondering if my life was over, depressed as hell, wondering if i was better off dead. That passed over the weekend (I tend to work "issues" pretty fast and move on). On the other hand, these lovely folks here have listened to me complain about stuff and have supported me, good news and bad.
I wish you all the best. Please don't let your fear rule you. You need your courage right now and you can do this...You can!
Deb
Some folks have horrendous problems. Some folks have relatively few or none.
I'm a former marathoner, ran one last year and trained in boxing (no bloodletting, chilluns) and i HAVE beens sick some but it is much less than i thought it would be. I am on a whopping dose of riba (1400) and i have some trouble with mouth and GI tract ulcers. My hemoglobin dropped precipitously (over 3 points in nine days) but it has leveled off. it was very high to begin with (almost 17) but as my doc likes to say "you had a long way to fall". I felt bad during the fall but am better this week. I tend to have more problems healing small cuts and scrapes than i used to. I am still working between 45-55 hours a week at a stressful job. That is as real as I can get in terms of describing how it really is. I am probably the least "drama queen" person you'd meet (remember, marthons and boxing) but yeah, sometimes it is challenging! I did not have a biopsy and wasn't required to get one but this may be due to the acute nature, even though i had horrible liver function tests during the acute illness eight weeks after i had an abdominal surgery. My VL was never higher than 42000.
The good news in all of this is that I was UND at two weeks.
My point is that you won't know until you start. I try not to EXPECT sides even though it is tough not to want to watch for them. I had a dozen ulcers in my mouth for a week before i figured something was wrong, it mostly felt like i was biting my tongue. Attitude is part of it. Fear is part of it. Overnoticing symptoms (or undernoticing them) is part of it. Find a middle ground balance place if you can.
Also if it helps I was diagnosed just before a weekend and spent the weekend wondering if my life was over, depressed as hell, wondering if i was better off dead. That passed over the weekend (I tend to work "issues" pretty fast and move on). On the other hand, these lovely folks here have listened to me complain about stuff and have supported me, good news and bad.
I wish you all the best. Please don't let your fear rule you. You need your courage right now and you can do this...You can!
Deb
Hi welcome to the best place to be when you've been diagnosed. I was on tx for 16 weeks and I was an early responder so I quit voluntarily. I worked during tx but I was lucky to have flexible hours, but a very physical job. I don't know yet if I'm rid of the virus, but I owe a lot to the others here for all the support.
Prayer, attitude and a supportive family helped a lot, but no one can identify with what you're going thru except others with the disease and/or tx. Some people have opted to wait to tx when damage was minimal. There are probably a lot of people who don't have side effects with tx, like Myown, but they don't post here very often. If you tx, you might not have any sides.
I'm repeating some of the same stuff that's already been said, but it's so overwhelming at first, you have to hear stuff again and again for it to sink in. Well, at least I did! There's awhole new vocabulary here regarding tests and acronyms for all kinds of stuff too. Maybe someone will post the short cut to understanding some of the lingo.
Good luck,
Bug
Prayer, attitude and a supportive family helped a lot, but no one can identify with what you're going thru except others with the disease and/or tx. Some people have opted to wait to tx when damage was minimal. There are probably a lot of people who don't have side effects with tx, like Myown, but they don't post here very often. If you tx, you might not have any sides.
I'm repeating some of the same stuff that's already been said, but it's so overwhelming at first, you have to hear stuff again and again for it to sink in. Well, at least I did! There's awhole new vocabulary here regarding tests and acronyms for all kinds of stuff too. Maybe someone will post the short cut to understanding some of the lingo.
Good luck,
Bug
i had trouble with who to tell, told my children (am divorced), my family lives far, i told them too, not much they can do, but i thought i would want to know if they were ill, so thought my dad would take it hard or be critical whatever so he was the hardest - it was much better after i told him. and the reaction was nothing like i imagined. you know if you needed help - it is easier to garner support if they know you might eventually have some need. for example - if you couldn't work, maybe family could help keep the insurance going so husband could keep his job rather than move employer - usually takes a while for new ins. to kick in.
think about as many alternative options as possible in advance (what if can't work, how to pay bills, etc..who could or would help you might be family, friend, neighbor, church. some churches help even if you are not their member)
good luck
think about as many alternative options as possible in advance (what if can't work, how to pay bills, etc..who could or would help you might be family, friend, neighbor, church. some churches help even if you are not their member)
good luck
Try this site. You will love it!
so much information for your understanding.
with VL being so low I hope and pray you can wait to treat, as there are better meds coming our way. Hopefully before 2010,so far that is the prediction. Thats
only 3 yrs. We can all hope.
http://janis7hepc.com
so much information for your understanding.
with VL being so low I hope and pray you can wait to treat, as there are better meds coming our way. Hopefully before 2010,so far that is the prediction. Thats
only 3 yrs. We can all hope.
http://janis7hepc.com
There are different types of treatment you doctor can tell you which one is best for you. The shot is once a week. But the pills you take morning and night. If you don't take them with fat they might come back up. I take 9 almonds in the a.m. after my cereal. Then I take 2 pills. In the evening after dinner I take 2 pills after my ice cream. I had some trouble with nausea at first the doctor can give you pills. But the fat helps the most.
There's lots of information on the internet about hepatitis C, you can google it..
Welcome to this great forum and good luck with treatment. I'm also 1a and I'm in week 31/51.
Take good care. You have lots of help here.
There's lots of information on the internet about hepatitis C, you can google it..
Welcome to this great forum and good luck with treatment. I'm also 1a and I'm in week 31/51.
Take good care. You have lots of help here.
The other thing is, how is your support system emotionally and finacially if you were unable to work?
I'm sorry you're scared.
Well ,I can tell you have no idea what's to come.
I'd get the biopsy asap you want to know where you stand with your liver.
This biopsy will tell you your grade and stage. This will tell you if you should treat now or later.
Well ,I can tell you have no idea what's to come.
I'd get the biopsy asap you want to know where you stand with your liver.
This biopsy will tell you your grade and stage. This will tell you if you should treat now or later.
I'm also kind of wanting to know how this affects work, my family, what to expect and that kind of thing.
I have an appointment with a gastroenterologist May 7th. My doc mentioned that a liver biopsy would likely be ordered. What other test will be needed before I start treatment?
How painful is the liver biopsy?
I'm having my gall bladder removed May 9th. I was wondering if the gastroenterologist could order to have the liver biopsy done at the same time as the gall bladder removal? That way I would only be put under once, and they're both about in the same area, right? Do you think that's a possibility?
What kind of tiredness can I expect?
What did you tell your children and extended family?
How did you tell work?
Will I be able to keep working?
I have so many questions. I want to go into this armed and positive, but I admit I'm a bit worried and scared. I don't want to be. I want to just buck up and deal with this. I just want to know what to expect I guess.
I'm worried about hair loss. For those of you who have experienced that, how much hair did you lose? Will a wig be necessary? At what point does it grow back? Or does it?
I have an appointment with a gastroenterologist May 7th. My doc mentioned that a liver biopsy would likely be ordered. What other test will be needed before I start treatment?
How painful is the liver biopsy?
I'm having my gall bladder removed May 9th. I was wondering if the gastroenterologist could order to have the liver biopsy done at the same time as the gall bladder removal? That way I would only be put under once, and they're both about in the same area, right? Do you think that's a possibility?
What kind of tiredness can I expect?
What did you tell your children and extended family?
How did you tell work?
Will I be able to keep working?
I have so many questions. I want to go into this armed and positive, but I admit I'm a bit worried and scared. I don't want to be. I want to just buck up and deal with this. I just want to know what to expect I guess.
I'm worried about hair loss. For those of you who have experienced that, how much hair did you lose? Will a wig be necessary? At what point does it grow back? Or does it?
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