Aa
And the Drama begins
Well I haven't gotten any news except for the fact that the levels are 46,000 and my enzymes were slightly elevated. The doctor is sending me to a liver specialist and for some other testing. She said that they may not treat me???UM I like have a freaking disease that I would like to get rid of or at least try to! So instead of treating they just watch me until it gets worse? i guess I will find this all out soon This has really caused major emotional issues on my part I can't stop thinking about the fact that i have this life threatening disease eating away at my liver and blood and what makes me crazy is the NOT KNOWING not knowing which type it is yet not knowing how bad it is not knowing what stage I'm in not knowing if ill be okay to take care of my kids and go to school and not knowing how the hell i contracted it i feel so freaken lost i can't sleep it's making me a wreck I've never been one to cry but I'm having a time of it
“Well, first this is a slow progressive disease, most people live with this 20 years or more before they even know they have it, by that time they have cirrhosis of the liver,”
I don’t know if I am reading this wrong or the wording wrong. If the poster is saying after 20 years you will have cirrhosis of the liver, this is incorrect information. I and many others have had this over 30 years with little Liver Damage.
I don’t know if I am reading this wrong or the wording wrong. If the poster is saying after 20 years you will have cirrhosis of the liver, this is incorrect information. I and many others have had this over 30 years with little Liver Damage.
Your doctors sound like they know what they are doing. They are probably waiting for the new drugs to come out.
Good advice from the others. when i found out i was scared out of my mind like you. Especially what I read on the internet.
Keep in mind what you read on the internet is from people that need help. there are many more people that do fine on treatment and have no need to visit internet forums.
As for being scared of needles at first I was taking the syringe to my primary doc to inject me because there was no way I could do it. Then after about 4 weeks he was on vacation so I tried it myself, didn't feel a thing it is such a small needle.
try and relax it will get better
Good advice from the others. when i found out i was scared out of my mind like you. Especially what I read on the internet.
Keep in mind what you read on the internet is from people that need help. there are many more people that do fine on treatment and have no need to visit internet forums.
As for being scared of needles at first I was taking the syringe to my primary doc to inject me because there was no way I could do it. Then after about 4 weeks he was on vacation so I tried it myself, didn't feel a thing it is such a small needle.
try and relax it will get better
"school it is so important to me Aside from my kids its the only thing in my life that makes me feel good about myself "
Keep focused on those things, and not the hep c. Surely you are where you are in school today and have young children because you know how to exercise patience and diligence. Diagnosis and preparing to treat hep c is a lot of hurry up and wait, so keeping your attention on the good things in your life instead of the monster under the bed will help -- hep c is there, but it deserves a place in the background of your life -- your kids need you to be 100% and your studies do as well. Think about it: you have already lived your life having this disease, and knowing you have it doesn't change anything but what's in your head. The fears and tears can be a catalyst for you to educate yourself about his disease to help you can move forward, instead of letting it rob you of your sleep and happiness.
"instead of treating they just watch me until it gets worse? i guess I will find this all out soon This has really caused major emotional issues"
To answer your question, there are situations where hep c cannot be treated, but that is the minority -- and only for a smaller minority of people is hep c truly "life-threatening." What you can do to help your liver to start is to abstain from all alcohol, and keeping healthy with diet and exercising. Good luck. ~eureka
Keep focused on those things, and not the hep c. Surely you are where you are in school today and have young children because you know how to exercise patience and diligence. Diagnosis and preparing to treat hep c is a lot of hurry up and wait, so keeping your attention on the good things in your life instead of the monster under the bed will help -- hep c is there, but it deserves a place in the background of your life -- your kids need you to be 100% and your studies do as well. Think about it: you have already lived your life having this disease, and knowing you have it doesn't change anything but what's in your head. The fears and tears can be a catalyst for you to educate yourself about his disease to help you can move forward, instead of letting it rob you of your sleep and happiness.
"instead of treating they just watch me until it gets worse? i guess I will find this all out soon This has really caused major emotional issues"
To answer your question, there are situations where hep c cannot be treated, but that is the minority -- and only for a smaller minority of people is hep c truly "life-threatening." What you can do to help your liver to start is to abstain from all alcohol, and keeping healthy with diet and exercising. Good luck. ~eureka
Hi jcbi - maybe my story can help. I know when I found out I was just as scared as you. thought it was a death sentence too. I think I spent a year day and night on the internet. Found this site and everybody was so helpful and supportive. There are so many very informed and intelligent people on here. Many of them know more than the doctors that are supposed to be the experts! Not saying you should ignore your docs for info here. Find a good doctor you can trust.
I have had hep c for 42 years. I am stage 1 maybe 1-1/2 now. I have three or four women friends who have had it for the same time as me and they have normal LFTs and have decided to wait and watch. I'm the only one whose liver functions were elevated chronically. I and my friends are all about 60. This is a very slowly progressing disease for many like me and my friends and then for some, it's not. I do know two men who died of hep C after about 20 years. You just don't know. The last couple of years my AST/ALT have been going up and when they were about 3x upper limit of normal, I decided I should start treatment again. Not getting any younger now am I! I treated 7 years ago but quit when the interferon killed my thyroid. I got scared because these drugs are soooooo strong. I could only handle one problem at a time. Sorry I did that now because I now am in 14th week of treatment and it's not any easier now with taking thyroid hormone. You can bet I'm not quitting this time for anything. I get 12 week PCR results this week and I'm pretty confident I'm undetectable but keeping my fingers crossed too. I have read that women do better than men. Not sure if this is still thought of as true or not. I read it may be because estrogen protects us, they say... When I was first dxd viral load was 18 million (!) stage 1 fibrosis, stage 2 inflammation. After first treatment for five months in 2003, undetectable at week 12 and throughout - stage 0 for both fibrosis and inflammation. So it does help your liver, at least it did mine.
Hope you feel better soon about all this.
Pam
I have had hep c for 42 years. I am stage 1 maybe 1-1/2 now. I have three or four women friends who have had it for the same time as me and they have normal LFTs and have decided to wait and watch. I'm the only one whose liver functions were elevated chronically. I and my friends are all about 60. This is a very slowly progressing disease for many like me and my friends and then for some, it's not. I do know two men who died of hep C after about 20 years. You just don't know. The last couple of years my AST/ALT have been going up and when they were about 3x upper limit of normal, I decided I should start treatment again. Not getting any younger now am I! I treated 7 years ago but quit when the interferon killed my thyroid. I got scared because these drugs are soooooo strong. I could only handle one problem at a time. Sorry I did that now because I now am in 14th week of treatment and it's not any easier now with taking thyroid hormone. You can bet I'm not quitting this time for anything. I get 12 week PCR results this week and I'm pretty confident I'm undetectable but keeping my fingers crossed too. I have read that women do better than men. Not sure if this is still thought of as true or not. I read it may be because estrogen protects us, they say... When I was first dxd viral load was 18 million (!) stage 1 fibrosis, stage 2 inflammation. After first treatment for five months in 2003, undetectable at week 12 and throughout - stage 0 for both fibrosis and inflammation. So it does help your liver, at least it did mine.
Hope you feel better soon about all this.
Pam
"I am terrified of needles I can't even watch them take my blood! I have to close my eyes and look the other way so i am clueless on how to give myself a shot i been reading and someone said that the shot is chemo is that true?I also heard it can make your hair fall out and your teeth brittle omg I'm getting more & more terrified by the day I haven't slept in the last week I probably cant count the hours on one hand I just want to get the treatment and get it over with"
Not to mention the horns that grow out of your a$$, your voice changes so you sound like Mickey Mouse all the time and your boobs fall off. And when you bend over to pick them up your a$$ goes "moo". It's a challenge, that's for sure.
Not to mention the horns that grow out of your a$$, your voice changes so you sound like Mickey Mouse all the time and your boobs fall off. And when you bend over to pick them up your a$$ goes "moo". It's a challenge, that's for sure.
thx Mary you are a doll James those sites were very helpful as well as scary! At least i didnt see brittle teeth as one person said lol Ill be sick bald BUT Ill still have teeth lol I dunno I hope the type is one of the others but i doubt it from what i hear I hope I can continue school it is so important to me Aside from my kids its the only thing in my life that makes me feel good about myself
then there's the Riba that you'll also take
http://www.mayoclinic.com/health/drug-information/DR602577/DSECTION=side-effects
http://www.mayoclinic.com/health/drug-information/DR602577/DSECTION=side-effects
BREATHE!!!!!!! Ah yes I remember it well, I was super flipped out, anxiety level through the roof. Then I was advised to take an antidepressant and that combined with information, time this site, I've calmed down.
I have probably had this for 40 yrs. I am still a stage 1 grade 1. As my PA told me who sees tons of this, you are more likely to die with this disease than from it. It all depends, and it is slow progressing, and there are better treatments on the horizon.
Dont drink alcohol, dont eat fatty fried food, artichokes are great, milk thistle, good water, try to stay calm. the liver is a phenomenol organ that regenerates itself, Good Liver
Sugar not good either, my tibetan doctor said to stay away from oils, she said butter in moderation is better. Tibetan Medicine has a very good take on GI problems.
I am starting a study on the 25th after waiting 2yrs for one to come to my area, and it went by pretty fast, most of the time I just thought how good it would be for a study to come to town, and then I go about my life, I dont think I have any symptoms, I'm 61 and I get tired, but mostly I'm tired of the BS. But having this disease has woken me up once again to the fact that time is not to be wasted.
Practice not worrying it does not good, try to turn a negative to a positive, (easy to say), but it is a good use of time. These peeps on this site are wonderfully supportive and informed. You have a good support system here.
Hang in get all the info you can and keep coming back.
Love, Mary4now
I have probably had this for 40 yrs. I am still a stage 1 grade 1. As my PA told me who sees tons of this, you are more likely to die with this disease than from it. It all depends, and it is slow progressing, and there are better treatments on the horizon.
Dont drink alcohol, dont eat fatty fried food, artichokes are great, milk thistle, good water, try to stay calm. the liver is a phenomenol organ that regenerates itself, Good Liver
Sugar not good either, my tibetan doctor said to stay away from oils, she said butter in moderation is better. Tibetan Medicine has a very good take on GI problems.
I am starting a study on the 25th after waiting 2yrs for one to come to my area, and it went by pretty fast, most of the time I just thought how good it would be for a study to come to town, and then I go about my life, I dont think I have any symptoms, I'm 61 and I get tired, but mostly I'm tired of the BS. But having this disease has woken me up once again to the fact that time is not to be wasted.
Practice not worrying it does not good, try to turn a negative to a positive, (easy to say), but it is a good use of time. These peeps on this site are wonderfully supportive and informed. You have a good support system here.
Hang in get all the info you can and keep coming back.
Love, Mary4now
oh also while im waiting to do these test is there any special vitamins i can take to improvr liver functioning anything i should or shouldnt eat or drink? How can I begin to help myself?
I am terrified of needles I can't even watch them take my blood! I have to close my eyes and look the other way so i am clueless on how to give myself a shot i been reading and someone said that the shot is chemo is that true?I also heard it can make your hair fall out and your teeth brittle omg I'm getting more & more terrified by the day I haven't slept in the last week I probably cant count the hours on one hand I just want to get the treatment and get it over with
Well, first this is a slow progressive disease, most people live with this 20 years or more before they even know they have it, by that time they have cirrhosis of the liver, they have already have a "yellow" tint to their skin, the Liver biopsy is not bad, it takes a few seconds and it is like a quick punch in the side that is really nor bad at all, the NAME biopsy sounds alot worse than the actual procedure itself, then the MD's will know if there is any damge to the liver, if is cirrhosis, or fibrosis. Some Fibrosis is normal, a fatty liver is normal especially if you are over weight (I am, so having a fatty liver was normal for me). You will then know what your Geno Type is, That is important info, this will let you know if you have a Geno type that is hard to treat, Geno type1...they say is the tricky one to treat, it doesn't respond very well to treatment, or if you have Geno type 2 or 3, which respond very well to treatment( I have Geno 1) there is a new Medicine that is begin approved by the FDA now, and should be ready by June 2011 this year, is "Telaprevir". it is given along with Peglated-interferon and ribavirin. This is the typical medicines given. Interferon is something we already have in our bodies, it is what makes us feel bad when we have the flu, but, this is what fights a virus in our system, so they normally order you to give yourself a shot in the belly one a week and ribavirin is a pill you take daily. I'm waiting on the new medicine to come out before begining my treatment, I have read great things about this medicine for Geno Type 1 patients. Most of the time they wait to see what your Liver biopsy shows and then they go from there on how aggressive they treat you. This is a slow progressive disease, so just take one day at a time. Trying to figure out where you got it doesn't make things any better, the fact still remains, I will keep you in my prayers, and we will get thru this hard times..
Hi, I'm sorry to hear about your diagnosis. Believe me, we've all been there at some point, & it does get better! I'm 40, like you, & was diagnosed 4 yrs ago, right before Christmas...it was awful, thinking it was a death sentence & that anyone who found out would shun me or think I was an IV drug addict. I slept horribly, was a zombie for a month, just went to work & read this site for hours on end, daily, & would schedule dr appts at the drop of a hat, just to be told the same old info.
I think the most important thing for the time being is to try not to freak out (easier said than done), get plenty of SLEEP which will help with the stress of a newfound diagnosis. Me, I had night sweats at the start like you wouldn't believe--I actually dreaded falling to sleep at night (like a Freddy Kruger movie!)
Don't worry about the watching-waiting part...this is a VERY slow moving disease, so a few days won't change much. People often have it for 20-30 YEARS before major damage occurs (if it ever does), of course, provided that you don't drink & do what you can to maintain your general health.
Trust me, things will get better. This board is an excellent resource for information, blowing off steam, camaraderie, etc. etc. etc.
I think the most important thing for the time being is to try not to freak out (easier said than done), get plenty of SLEEP which will help with the stress of a newfound diagnosis. Me, I had night sweats at the start like you wouldn't believe--I actually dreaded falling to sleep at night (like a Freddy Kruger movie!)
Don't worry about the watching-waiting part...this is a VERY slow moving disease, so a few days won't change much. People often have it for 20-30 YEARS before major damage occurs (if it ever does), of course, provided that you don't drink & do what you can to maintain your general health.
Trust me, things will get better. This board is an excellent resource for information, blowing off steam, camaraderie, etc. etc. etc.
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