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FURIOUS about this disease...
Okay so when I got diagnosed with hep c, I was angry only at myself. When I joined this forum I had sympathy for the people that had the virus as well. I just started treatment on Dec 30th. It finally hit me when I took those first 2 pills, and that first shot. I am now furious with the world...the ignorant world, that is. How come people are not educated about Hep C? How come the general population doesn't know that it can survive in blood for days, maybe longer? How come when I turn on the T.V. I see prevention adds and med commercials for HIV, AIDs, Herpes, HPV, all sorts of Cancer, and much more?? I have never in my life seen any sort of prevention for Hep C. OH wait, I take that back...I've seen it in several drug pamphlets or anti drug messages that using someones needle could infect you. THATS IT? seriously? thats the best they have? really? Pathetic. I'm furious that the world is not educated, atleast I wasn't. Nobody I know has every talked about it. Except of course, when I was in rehab 10 years ago. I now have much more sympathy for those that are ignorant and uneducated about this disease. Atleast we know about it now, and we are doing what we can to manage it and prevent it. Something has to be done. This is bull. I am sad. I am angry. What are you?
Just try this,ask strangers on the street if they know what hep C and other questions about it,most will not even have a clue,just say your doing a little personal survey/
Such a good point about ignorance of so many people about this disease. I had to straighten out my own doctor about transmission of the disease after she asked me if I contracted it through "drugs or intercourse". She checked her little brochures that she uses for patients at risk and indeed there was nothing about sexual transmission on there. She thanked me for straightening her out. I told her that screening should be more routine. I had to ask for the test when I got diagnosed. Her response to that was that she tries to feel out her patients with questions but actually blood testing everybody is really not realistic. I kind of think it should be. Especially for those who did not get it through drug use (we know who we are and if we are smart will ask for the test). Some of those other folks (transfusions, other blood products, from mother, etc.) have it their whole life or many years and don't have a clue. They may never find out unless they try to donate blood or some other roundabout way of finding out. A friends husband tried to take out a life insurance policy and found out he had had the virus at one time. He was one of the lucky ones who cleared the virus on his own. That's my rant for the day. This topic hits home with me, I try to educate when the opportunity presents itself, too.
Hey girlfriend!!! Good to hear from you. It's been quite a while. I have left you a note.
Much love, Marcia
Much love, Marcia
Hey Friend - hope life is being good to you and yours. My life is pretty much the same, BUT always seem to be adding to my list of health issues.
Latest is dealing with BM issues, saw PCP last Wednesday, she prescribed an Rx to help, then started having vaginal bleeding (bright red with some clots) - the thing is, I had a hysteroctomy when I was 33, but left with one ovary. Is that sort of bleeding an indicator of ovarian cancer? I will sometimes have the bright red blood after straining with a BM, but have had hemorrhoids ever since I had my daughter 34 years ago.
I get so tired of adding to that damn list of "issues" - I just want to go visit my lovely pregnant daughter for Christmas in Texas, I fly there the 23rd, back the 27th - looking forward to seeing her, the "belly", her new home, and just forgetting everything else.
She had kind of a scare this past week, because she wasn't 'feeling' that baby boy moving for a day or so, and she said he ALWAYS moves. So she got a sonogram, and learned he's in breach position, with his back facing Nicole, so he's sort of "sitting in her lap", with his little head sort of in front of her sternuml. Anyway, after the sonogram, her doctor called her back and said she had "minimal fluid" - and that she had to REALLY hydrate to help with the problem.
Of course, I get all worried not only about my grandbaby - but MY baby, ya know? I don't want to concern herself with my health issues, when she needs to focus on her little "bundle" - but it is what it is, I suppose. She's so good about not worrying - BUT, she commented that when she was freaked out about him not moving "I guess this is when the worry starts, huh"? - Yeah, pretty much.
Anyway dear girl, when you find time, would love to hear from you. HUGS, Debbie
Latest is dealing with BM issues, saw PCP last Wednesday, she prescribed an Rx to help, then started having vaginal bleeding (bright red with some clots) - the thing is, I had a hysteroctomy when I was 33, but left with one ovary. Is that sort of bleeding an indicator of ovarian cancer? I will sometimes have the bright red blood after straining with a BM, but have had hemorrhoids ever since I had my daughter 34 years ago.
I get so tired of adding to that damn list of "issues" - I just want to go visit my lovely pregnant daughter for Christmas in Texas, I fly there the 23rd, back the 27th - looking forward to seeing her, the "belly", her new home, and just forgetting everything else.
She had kind of a scare this past week, because she wasn't 'feeling' that baby boy moving for a day or so, and she said he ALWAYS moves. So she got a sonogram, and learned he's in breach position, with his back facing Nicole, so he's sort of "sitting in her lap", with his little head sort of in front of her sternuml. Anyway, after the sonogram, her doctor called her back and said she had "minimal fluid" - and that she had to REALLY hydrate to help with the problem.
Of course, I get all worried not only about my grandbaby - but MY baby, ya know? I don't want to concern herself with my health issues, when she needs to focus on her little "bundle" - but it is what it is, I suppose. She's so good about not worrying - BUT, she commented that when she was freaked out about him not moving "I guess this is when the worry starts, huh"? - Yeah, pretty much.
Anyway dear girl, when you find time, would love to hear from you. HUGS, Debbie
Too many people to treat, almost a 1/4 of billion (170 million)world wide has hep,can you imagine the cost to society treating all of these at once.At 50,000 a patient,you do the math.
I always thought for years when you got hep you just turned yellow and it went away on its own for everybody,even the day i was DX with it i said to the doc,so what,no big deal.I still was mis- informed until i came to this site 5 years ago,...ITS ALMOST CRIMINAL they dont make hep more aware to the public.
What *am* I ? Happy to be SVR.
What *was* I on tx? Angry. Crazy. Tired. Goofy, Loopy. Highly dependent on my family, my co-workers, my 12 step group, my doctors, and anyone else who would put up with me.
How was I when diagnosed ('92)? Actually, sorta relieved that there was a name for what I had. I'd known since '73 I had something wrong with my liver that wasn't HAV or HBV and was keeping my ALT/AST slightly elevated. Never went through the anger/fear/denial thing a lot of people seem to go through.
As for HCV ecucation - that's up to us who are most effected to spread the word. The rest of the world has a lot else on their minds.
Seems to me the people who have ruined their livers on good Scotch and are afraid they might have to wait in line behind an HCV patient for a transplant are the ones who have the resources and incentive to be out there pushing education and treatment.
But that's just my warped perspective,
What *was* I on tx? Angry. Crazy. Tired. Goofy, Loopy. Highly dependent on my family, my co-workers, my 12 step group, my doctors, and anyone else who would put up with me.
How was I when diagnosed ('92)? Actually, sorta relieved that there was a name for what I had. I'd known since '73 I had something wrong with my liver that wasn't HAV or HBV and was keeping my ALT/AST slightly elevated. Never went through the anger/fear/denial thing a lot of people seem to go through.
As for HCV ecucation - that's up to us who are most effected to spread the word. The rest of the world has a lot else on their minds.
Seems to me the people who have ruined their livers on good Scotch and are afraid they might have to wait in line behind an HCV patient for a transplant are the ones who have the resources and incentive to be out there pushing education and treatment.
But that's just my warped perspective,
Sorry I forgot to say.
Congrats on starting tx. I hope you will not suffer too much. Wishing you a ride as smooth as possible.
Congrats on starting tx. I hope you will not suffer too much. Wishing you a ride as smooth as possible.
Personally I did not know one single thing about hepatitis C before I was diagnosed. I knew it existed, but I had no clue about how one could get it. Now that I look back on it, it is strange that this is not even 2 years ago. I was diagnosed in March 2008 and I'm already done with all of it. Like a strange dream.
Ignorance it was on my part, I believe. It is true that there is no info out there, they make people aware of all kinds of other infectious diseases, but not of hepatitis, be it A, B, C etc. So maybe it is a combination of the two. lack of public info and my own ignorance.
Ignorance it was on my part, I believe. It is true that there is no info out there, they make people aware of all kinds of other infectious diseases, but not of hepatitis, be it A, B, C etc. So maybe it is a combination of the two. lack of public info and my own ignorance.
I dont agree its ourult all all that we got this disease.It was here on this planet for eons before we were born so why wasnt it made aware while were growing up as kids and in schools.And just because some of us hadfun in the sixites with recreational drugs oes not make it our fault either as this was the "normal" way of life for the flower children.I went for an HIV test 15 years ago and they did all the tests except for HCV...i thought i was disease free for 15 years,whose t blame?....no me...i was thrown into this world like a dog without a bone
Well you have to take a look in the mirror and say why didnt I know more about this disease before it was a part of my life? Personally I don't know very much about HIV or Lupus or many other diseases but I don't blame the world for my own ignorance.
We all know this disease is out there and have a pretty good understanding of how you get it well before any of us were diagnosed. Even if our knowledge wasn't up to the expert level at some point many of us made a bad choice that lead to the eventuality of having to treat (obviously not the folks who had transfusions prior to '92...).
Mostly it is our OWN ignorance that brings things like this upon ourselves. We can only blame ourselves for that as the information certainly is out there.......we just choose to ignore it until it's too late.
We all know this disease is out there and have a pretty good understanding of how you get it well before any of us were diagnosed. Even if our knowledge wasn't up to the expert level at some point many of us made a bad choice that lead to the eventuality of having to treat (obviously not the folks who had transfusions prior to '92...).
Mostly it is our OWN ignorance that brings things like this upon ourselves. We can only blame ourselves for that as the information certainly is out there.......we just choose to ignore it until it's too late.
Anger is a potential side effect of interferon. I know that's not what you mean by your post, though. There was a bill in congress that I believe failed to get enough sponsors to go forward, not sure. Several of us contacted our congressmen in early November to ask them to support the bill. I don't know if anything came of it. It's intent was education.
I had acute hepatitis as a teenager and always assumed that I had beaten it. It was so long ago that they did not even know for sure that Hepatitis C existed. Boy was it a horrible surprise to learn that I had been carrying it around with no symptoms for 38 years. I was mad that no doctor had ever screened me for it before last year when my liver enzymes finally went up. Why didn't someone notice it at an annual physical? I completely agree that education is the key all across the boards, from health care workers to the possibly infected. Education takes money to foot the bill. We should be angry at our legislators for failing to push education forward.
Now I'm clear of the virus and mad at interferon because it's so slow to let me go.
I had acute hepatitis as a teenager and always assumed that I had beaten it. It was so long ago that they did not even know for sure that Hepatitis C existed. Boy was it a horrible surprise to learn that I had been carrying it around with no symptoms for 38 years. I was mad that no doctor had ever screened me for it before last year when my liver enzymes finally went up. Why didn't someone notice it at an annual physical? I completely agree that education is the key all across the boards, from health care workers to the possibly infected. Education takes money to foot the bill. We should be angry at our legislators for failing to push education forward.
Now I'm clear of the virus and mad at interferon because it's so slow to let me go.
Sorry about that...a mis-type on my part...You're correct, most people have some idea how they contracted Hep c...When I found out I was infected, I'd been so for at least 5 years...And had explained away the increasing fatigue as effects from getting older and holding down a full schedule...Nobody ever would have guessed I was Hep C positive...~MM
"Most people who are infected have no idea how they got it. "
Its the other way around,most do know where they got it from,i think its 15% who dont know,or are not telling the truth as im sure there are some who dont want anyone knowing how they got it,just like people not wanting to tell anyone they even have the disease.It can ONLY be contracted from 3 or 4 main sources.IV drugs the top of the list with hospital surgerys, dentists and tattos the other ways.I cannot see any other way to catch this virus as sex is last on the list.
Its the other way around,most do know where they got it from,i think its 15% who dont know,or are not telling the truth as im sure there are some who dont want anyone knowing how they got it,just like people not wanting to tell anyone they even have the disease.It can ONLY be contracted from 3 or 4 main sources.IV drugs the top of the list with hospital surgerys, dentists and tattos the other ways.I cannot see any other way to catch this virus as sex is last on the list.
Hello. I'm a survivor and I'm happy to be alive and healthy again and Hep C free. I'm also an advocate. I give lectures to health care workers about my experience as a Paramedic who got stuck by the wrong needle, and share that Hep C can infect ANYONE. Most people who are infected have no idea how they got it. Many people with Hep C AREN"T drug users or tattooed and have contracted unknowingly through everyday life events.
When I was infected, I was horrified and thought I was going to die. I discovered later that, all we are really told about hep C in the health care field is that it is spread by blood to blood contact, and that if we get it, there is no treatment and we will die a horrible death of liver failure. It IS still viewed as a drug-user's disease and carries the stigma of such -like, if you get it, you probably did something to deserve it. This ignorance is enraging to those of us who know better, and I get a lot of satisfaction from spreading my knowledge to others and enlightening them. It is shocking how many DOCTORS know so little about it's treatment and its effect on multiple body systems. So, it is up to us to increase the awareness. ~MM
When I was infected, I was horrified and thought I was going to die. I discovered later that, all we are really told about hep C in the health care field is that it is spread by blood to blood contact, and that if we get it, there is no treatment and we will die a horrible death of liver failure. It IS still viewed as a drug-user's disease and carries the stigma of such -like, if you get it, you probably did something to deserve it. This ignorance is enraging to those of us who know better, and I get a lot of satisfaction from spreading my knowledge to others and enlightening them. It is shocking how many DOCTORS know so little about it's treatment and its effect on multiple body systems. So, it is up to us to increase the awareness. ~MM
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