Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
hello.
my name is alexandra...I have never shared all this with anyone, except a $90 an hour therapist, which I can't afford anymore. I browsed this site and thought this may be a cheaper more meaningful way to get the support I desperately need now.
I have three almost grown girls. I live alone..in the colorado mountains.
I was diagnosed about 10 years ago. We traced it to a blood transfusion in 1978 after a ski accident.
Or it could hsve been another way....who knows?
who cares?
I have it.
after being diagnosed I had my three girls tested...to my horror, I found my oldest girl, who was only 15 at the time, came up positive. I believe she contracted the virus through birth...she was my only child born with me having had a episiotomy....unessesary at that!
we both tried the tx in 97, and couldn't do it...the side effects were horrendous.
my daughter tried again in 2000, when the riboviren came into the mix. She was on tx for one year. It was the worst thing I have experienced....watching her...vomit every day, loosing her hair, all while she should have been enjoying her sophmore year at college. But she was adament to "get this over with!"
well, I won my deal with God, and for her it worked...no detectable viral load for 6 years now.
after my youngest left for college in late 04 I tried again...it was the hardest, (after watching my girl go through it) thing I ever went through. 9 months...and no success.
I wish I had done more research on interferon before we did this...I know it works for some people, but my daughter is the exception, not the rule...and for us that are unsucessfull..it has been a nightmare. My viral load has increased dramtically, I have joint pain that won't quit...and worst of all are what I call my "episodes".
am hoping some of you know what I am talking about.
several years ago I thought it was the stomach flu...till a good friend mentioned to me, "boy, girl, you get alot of stomach flus!"
I started charting these episodes and realized it was more than a stomach flu.
Most days I just feel regularly crappy...mornings are tough, nausea...no energy, etc.
every 2 months or so I feel like I have severe food poisoning..can't move out of bed...no energy at all! nausea so bad I can drop 10 lbs. in two weeks. these episodes last from 2 weeks to 6 weeks, then when they are over, I have almost a honeymoon phase for a week or so, where I feel as good as I can...more energy, etc. Then it comes again...
I have been to all kind of specialists, I hate doctors...most anyway!
the feeling crappy part I get, it is symptomatic of my disease, but the other...there has to be some reason why it comes and goes, no?
I don't drink or smoke, a little weed just to help with the extreme nausea...but don't like the side effects....
has anyone out there experienced this?
Misery loves company, I guess.
I just feel like if I can figure this out I can live with it.
My life is slowly becoming almost unbearable to live....but dying is not an option.
I really related to the "to whom it may concern" letter.....I have slowly pushed away my friends cause I constantly have to make excuses for not keeping dates, plans...and I am soooo sick of telling people i don't "feel up to it" Pity is not my style.
I just thought talking to people who understand may help.
thanks for listening!
peace,
alex
my name is alexandra...I have never shared all this with anyone, except a $90 an hour therapist, which I can't afford anymore. I browsed this site and thought this may be a cheaper more meaningful way to get the support I desperately need now.
I have three almost grown girls. I live alone..in the colorado mountains.
I was diagnosed about 10 years ago. We traced it to a blood transfusion in 1978 after a ski accident.
Or it could hsve been another way....who knows?
who cares?
I have it.
after being diagnosed I had my three girls tested...to my horror, I found my oldest girl, who was only 15 at the time, came up positive. I believe she contracted the virus through birth...she was my only child born with me having had a episiotomy....unessesary at that!
we both tried the tx in 97, and couldn't do it...the side effects were horrendous.
my daughter tried again in 2000, when the riboviren came into the mix. She was on tx for one year. It was the worst thing I have experienced....watching her...vomit every day, loosing her hair, all while she should have been enjoying her sophmore year at college. But she was adament to "get this over with!"
well, I won my deal with God, and for her it worked...no detectable viral load for 6 years now.
after my youngest left for college in late 04 I tried again...it was the hardest, (after watching my girl go through it) thing I ever went through. 9 months...and no success.
I wish I had done more research on interferon before we did this...I know it works for some people, but my daughter is the exception, not the rule...and for us that are unsucessfull..it has been a nightmare. My viral load has increased dramtically, I have joint pain that won't quit...and worst of all are what I call my "episodes".
am hoping some of you know what I am talking about.
several years ago I thought it was the stomach flu...till a good friend mentioned to me, "boy, girl, you get alot of stomach flus!"
I started charting these episodes and realized it was more than a stomach flu.
Most days I just feel regularly crappy...mornings are tough, nausea...no energy, etc.
every 2 months or so I feel like I have severe food poisoning..can't move out of bed...no energy at all! nausea so bad I can drop 10 lbs. in two weeks. these episodes last from 2 weeks to 6 weeks, then when they are over, I have almost a honeymoon phase for a week or so, where I feel as good as I can...more energy, etc. Then it comes again...
I have been to all kind of specialists, I hate doctors...most anyway!
the feeling crappy part I get, it is symptomatic of my disease, but the other...there has to be some reason why it comes and goes, no?
I don't drink or smoke, a little weed just to help with the extreme nausea...but don't like the side effects....
has anyone out there experienced this?
Misery loves company, I guess.
I just feel like if I can figure this out I can live with it.
My life is slowly becoming almost unbearable to live....but dying is not an option.
I really related to the "to whom it may concern" letter.....I have slowly pushed away my friends cause I constantly have to make excuses for not keeping dates, plans...and I am soooo sick of telling people i don't "feel up to it" Pity is not my style.
I just thought talking to people who understand may help.
thanks for listening!
peace,
alex
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I do understand, though, because there are more tan a few nonresponders here. They'll be checking in later. I just want you to know that you are in a great place. We celebrate your daughter's SVR!!!! We will be here for you. Have you had a biopsy? What is your genotype and viral load?
The first one is what has your dr said about the recurring flu type episodes?
To be bedridden and vomiting regularly to the point of a noticeable weight loss should definitely be investigated.
Next, I did not see you mention what stage/grade you were/are. I cannot speak for issues that you may have if you liver is in a very bad condition, but as a person will no significant damage and as a relapser, my only issue post tx is trouble with a weight gain and not being able to lose it.
I was glad to hear that your daughter did tx and has her SVR, but I have to say that there are many many people who do tx and clear the virus, so I am not sure that the words exception and rule can be applied.
Depending on genotype, the numbers of cleared are as high as 85% but that's for the 2s and 3s. For the 1s, it's closer to 50 or 60%.
I would truly encourage you to be after your dr for an explanation and some sort of tx for your current issues. I have not heard of any others with a regular debilitating flu such as you describe - if anyone on this site has the same issues, it would be helpful to hear of them and what they did about it.
Good luck in finding the cause of your current problems.
I am glad to see your daughter has managed to clear this awful virus, I just wish you could have too.
Thank you for sharing though as I am deciding wether to have treament or not at the moment, and want to hear the good and bad, so I can make an informed decision.
I wish you all the best, and hope you find some relief form some where for the awful stomach problems you have.
I suffer with an awful lot of Diarrhea, and fatigue from HCV, and would love to clear it but there are some factors with treatment that worry me, especially the mental health side, and I don't want to end up worse than I am now!
My thoughts are with you xx
Good Luck, God Bless :))