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The life with HCV (before treatment)
As some of the members in this forum might know, I am with HCV since 1980, after an injury, part of my liver right lobe had been resection due to liver rupture from the injury, I have received a lot of blood and with that also the virus. On 1995 I did a biopsy that found something like Stage 2, Some years ago my GB had been removed due to jaundice that caused because of gall-stones, 3 months ago I did FibroTest that said F4-A3, after that I did Fibrotest that said the same, 1 month ago I did biopsy that said Stage 2-3 and Grade 2-3 (not good at all but at least much better then F4), I will start tx very soon, my geno
I didn't find the place you mention within Jenis website. Could you please desribe how to get there ?
Hi Mike...she's doing okay for having long term late stage cirrhosis...really okay...as long as she keeps to her exercising and good diet, she keeps the acities(?) at bay...I wish she would go on a tp list, but of course, I can't force her...she's in a little bit of denial about it, but I just figure it's her journey...thanks for asking...
great bikes! A brother of mine, (who died of cancer some years ago now) was a motorcycle collector...he had a few Harleys (I remember trying to ride one when I was young, and then the handles got away from me and I went a$$ over heels and dumped it, he just came running up looking to see if his bike was alright, while I was there lying in the dirt, ha ha ha!) Everytime I see an Indian I think of him, Man, he loved those old Indians!
Jack: I went to Janis and didn't see you there, please post a code for your email and I will get back to you on this if you want, don't want you to think I was ignoring you....I'll gladly speak to you about this if you'd like...
Eric: hope youre doing great, I'll call you soon...glad to know that youre skiing!, I'm jealous...
great bikes! A brother of mine, (who died of cancer some years ago now) was a motorcycle collector...he had a few Harleys (I remember trying to ride one when I was young, and then the handles got away from me and I went a$$ over heels and dumped it, he just came running up looking to see if his bike was alright, while I was there lying in the dirt, ha ha ha!) Everytime I see an Indian I think of him, Man, he loved those old Indians!
Jack: I went to Janis and didn't see you there, please post a code for your email and I will get back to you on this if you want, don't want you to think I was ignoring you....I'll gladly speak to you about this if you'd like...
Eric: hope youre doing great, I'll call you soon...glad to know that youre skiing!, I'm jealous...
I don't do the exercising outdoors deal. Getting in the direct sunlight does a number on my skin (i.e. itching and burning). However, I do walk on the treadmill practically every day. I ride a stationary bike. I lift hand held weights. I do floor / stretching type of exercises. So, I get exercise. But, it's all in the A/C environment. It's not like I never see the sun, but I have to be totally out of it in the shade, or looking at it through the windows. None of the basking in the rays for me, or I suffer for it afterwards. But, this is not just from the HEP C and treatment. When I started thinking back about it, I've always been sun sensitive ever since childhood. I just didn't want to listen to my body and insisted on frying and getting sun poisoning just so that I could fit in with everybody else. I'm not doing that anymore. I'll let everybody else do it and let them enjoy it and do what works for me. I do notice that when I eat anything fried (even though it's good tasting going down), I suffer afterwards. So, I don't do that very often either. I do caffeine, but only before noon. If I don't do the caffeine, I never really wake up. It's like I'm sleeping in my brain all day long. Serious brain fog! I can't eat supper late because it doesn't work well as far as digestion. I drink mostly water except for the early day caffeine time. Eat mostly chicken/fish and vegat, some fruit. Occasionally, I eat what would qualify as junk foods, like pizza, chocalate, etc. I don't do the denying myself all the things that I enjoy eating. That affects my Q.O.L. too much. I don't have a lot of stamina so I literally have to alot a certain amount of time every day for rest period. That's about it.
Susan
Susan
i was also infected via transfusions secondary to liver fracture in 1981. severe fatigue led to dx in 1999. after spending 2 weeks in bed my PCP tested me for HCV. the fatigue forced me to cut back at work weeks and at 51, i am now semi-retired. i have undergone at least 3 fair-ups when ALT and AST are in the hundreds. these flair-ups would last one to two years. besides extreme physical fatigue there is also loss of cognitive ability. I believe one of the factors that may have triggered the flair-ups was extreme physical exertion. high levels of physical stress have been associated with poor immune response. before i was diagnosed, when my liver enzymes were in the normal range, i would loss steam at work and rely on caffeine to make it through the day.
my PCP is currently working me up for adrenal fatigue which may be contributing to my overall fatigue. this may be one of the extra-hepatic manifestations. when the adrenals shut down, it is called Addison's disease, which was first diagnosed in patients suffering from TB.
i wish you the best of luck in your treatment. i have not treated so i can't give you an after-treatment picture. given my situation i have maybe a 30 percent chance of SVR with current SOC. even if i were lucky enough to clear the virus, i don't believe there would be an increase in quality of life.
forsee; your immune system must be doing something right to keep the viral load so low! i would also love to see your supplement list. however, i understand why list members would react poorly to those trying to profit from or encourage others to take supplements.
my PCP is currently working me up for adrenal fatigue which may be contributing to my overall fatigue. this may be one of the extra-hepatic manifestations. when the adrenals shut down, it is called Addison's disease, which was first diagnosed in patients suffering from TB.
i wish you the best of luck in your treatment. i have not treated so i can't give you an after-treatment picture. given my situation i have maybe a 30 percent chance of SVR with current SOC. even if i were lucky enough to clear the virus, i don't believe there would be an increase in quality of life.
forsee; your immune system must be doing something right to keep the viral load so low! i would also love to see your supplement list. however, i understand why list members would react poorly to those trying to profit from or encourage others to take supplements.
I have a Harley and a custom American V twin chopper - the one I wrecked.
How is your Sister doing? I haven't seen anything new about her and I am interested. If you have the time and inclination post an update.
Mike
How is your Sister doing? I haven't seen anything new about her and I am interested. If you have the time and inclination post an update.
Mike
I assume that what I experience are the sides of the disease, I agree with Forseegood doc explanation for the reasons for this sides. I believe that it is our body immune system fighting the disease (the inflammation) and that consume a lot of energies from our body and we become weak and therefore suffer much more from allergies and other bad things that we are much more exposed to them then a normal healthy person.
It looks like that it is very different between Forseegood and my experience, especially in terms of frequency and duration (how long and often we experience this sides), Forseegood experience those sides it in about once in a year while for me this is my life at least 50% of the time, this is a very significant different, that might be explained by that my liver situation is much worse (stage 2-3, grade 2-3) while Forseegood is with stage 1 (I think).
It is really very difficult to cope with this sides on a daily routine, it is very exhausting, and I know myself as a person with a very high stamina. Sometimes I think about what I lose along the years because of this sides (career opportunities, deals, etc ..) and it is so much
It looks like that it is very different between Forseegood and my experience, especially in terms of frequency and duration (how long and often we experience this sides), Forseegood experience those sides it in about once in a year while for me this is my life at least 50% of the time, this is a very significant different, that might be explained by that my liver situation is much worse (stage 2-3, grade 2-3) while Forseegood is with stage 1 (I think).
It is really very difficult to cope with this sides on a daily routine, it is very exhausting, and I know myself as a person with a very high stamina. Sometimes I think about what I lose along the years because of this sides (career opportunities, deals, etc ..) and it is so much
I agree with you for the most part, believe me, for years I was a fast hiker and mountain climber, doing 5 to 8 miles every other day, or plain running...then I'd do cardio machines, and/or weight machines, and dead weights...I have to admit, it was mostly for my health, but I really liked having the body that comes with all that...shoot me, I'm vain, at least I admit it, ha ha!...
it's just that in the past few years with my fatigue problems, I find if I overdo it, I get more messed up then anything else...like I didn't have the reserves to do it and I was made to pay for it...so now I take it much easier, long walks, etc...sometimes it's hard for me to even do that, but I nearly always do my light yoga (it's also very good to stretch muscles and keep limber, for the body AND MIND) (maybe that's one reason I don't get so many aches and pains so many suffer from>) so not all of us can do really hard sweaty cardio workouts, though believe me, I'd rather take the health to do that then millions of dollars...and it's been proven that brisk walking is extremely benefitial, so cut the fatties a break, ha ha!:) Just as long as you keep moving for a period of time most days of the week...that includes gardening and yard work, brisk housework, etc...
it's just that in the past few years with my fatigue problems, I find if I overdo it, I get more messed up then anything else...like I didn't have the reserves to do it and I was made to pay for it...so now I take it much easier, long walks, etc...sometimes it's hard for me to even do that, but I nearly always do my light yoga (it's also very good to stretch muscles and keep limber, for the body AND MIND) (maybe that's one reason I don't get so many aches and pains so many suffer from>) so not all of us can do really hard sweaty cardio workouts, though believe me, I'd rather take the health to do that then millions of dollars...and it's been proven that brisk walking is extremely benefitial, so cut the fatties a break, ha ha!:) Just as long as you keep moving for a period of time most days of the week...that includes gardening and yard work, brisk housework, etc...
i still insist that "daily high heartrate extended cardio exercise" is a must for all of us. ill bet big money that the sedentary subgroup here would see drastic improvement in quality of life if this daily regimen was instituted and acheived.
you will find that many little problems would diappear. this has always proven true in my life.
i always think of lance armstrong, and his rehab. wow! maybe we will all find out one day that all those cardio rules just dont apply to hep c, i refuse to beleive this. besides, you/we dont really have many other ways to solve these problems anyway, go ahead and do it. there is universal consensus that hard cardio (within reason)is good for everything. one last thing just to make a point, i always see overweight people walking around the track at the gym, while this is better than nothing,
compared to the 170 beat per minute huffing and sweating sessions, there is no comparison. walking around the track will not acheive the reults of which i refer. on my bad days i will neglect house hold and other duties just to save up energy for my sweat burn, and many of my sessions these days are only ten minutes, but i will be soaked and tired afterwards. again house work dosnt acheive the high heartrates. go on a crusade, become an athlete, it will work!
you will find that many little problems would diappear. this has always proven true in my life.
i always think of lance armstrong, and his rehab. wow! maybe we will all find out one day that all those cardio rules just dont apply to hep c, i refuse to beleive this. besides, you/we dont really have many other ways to solve these problems anyway, go ahead and do it. there is universal consensus that hard cardio (within reason)is good for everything. one last thing just to make a point, i always see overweight people walking around the track at the gym, while this is better than nothing,
compared to the 170 beat per minute huffing and sweating sessions, there is no comparison. walking around the track will not acheive the reults of which i refer. on my bad days i will neglect house hold and other duties just to save up energy for my sweat burn, and many of my sessions these days are only ten minutes, but i will be soaked and tired afterwards. again house work dosnt acheive the high heartrates. go on a crusade, become an athlete, it will work!
yeah, these flare ups seem to manifest differently in different people...with me, it's every year and half, ha ha! and then while I'm in a flare up, it'll be like you, some days for a half day, etc...then it all goes away for a year and half...really strange...guess it's way better then having all those symptoms continually! Anyway, supplementation regimens are a bit tricky at this forum, could ruin some members day if I talk about them here...
probably better not to talk about them much here cause people will take it wrong, that I am advocating something *instead* of treatment...etc etc...I've gone to many nutritionists and people like that, so I do think these things should be tailored to the individual...I actually take less then I used to...anyway, why don't you go to Janis and Friends?, and I'll leave a message on the Introduce Yourselves section, and you can click on my handle, and it'll give you an inside email address...you only get my real email if I answer you...that's the best way to play it cause they don't have private emails here, and I don't want to post my private email here publically, BIG MISTAKE FOR ME....anyway, see you there....be well...
probably better not to talk about them much here cause people will take it wrong, that I am advocating something *instead* of treatment...etc etc...I've gone to many nutritionists and people like that, so I do think these things should be tailored to the individual...I actually take less then I used to...anyway, why don't you go to Janis and Friends?, and I'll leave a message on the Introduce Yourselves section, and you can click on my handle, and it'll give you an inside email address...you only get my real email if I answer you...that's the best way to play it cause they don't have private emails here, and I don't want to post my private email here publically, BIG MISTAKE FOR ME....anyway, see you there....be well...
I find what Forseegood say very familiar - "flare-ups", unformed stools and feel crappy (as dun4 describe), It comes and goes randomly.
3 hours ago I was crappy and now after taking some rest, eat something and walking outside for 1 hour in the fresh air I feel better.
It is frustrating, sometimes I lose credits in meetings and presentations because I feel crappy, I suppose that no one really notice that I feel bad but there is a bad impact on my performance when this crappy feelings exist, sometime it is hours, sometimes it is days.
Looks like that doing some sort of sport activity help for a while, I noticed that sometime anti-allergic pills or drops help.
Forseegood - Could you please tell what are the supplementation you take ?
Thanks, Jack
3 hours ago I was crappy and now after taking some rest, eat something and walking outside for 1 hour in the fresh air I feel better.
It is frustrating, sometimes I lose credits in meetings and presentations because I feel crappy, I suppose that no one really notice that I feel bad but there is a bad impact on my performance when this crappy feelings exist, sometime it is hours, sometimes it is days.
Looks like that doing some sort of sport activity help for a while, I noticed that sometime anti-allergic pills or drops help.
Forseegood - Could you please tell what are the supplementation you take ?
Thanks, Jack
yeah, a leetle too much Green Tea (which has a bit of caffiene too) this morning...hope youre doing well on your motorcycle (what kind is it? I picture you on a Italian one for some reason) and have a great weekend, to you and all..
I would love you to work for me if you can be busy and manage to post as much as you did. That's impressive. Mike
I am also 1b w/vl of 2,000,000, M, age 69. Probably infected in 1983. On shot 3/48. My recent biopsy was 1/1. with slightly elevated alt/ast.
I had the sysmptoms you describe. They were gradually getting worse. I just thought if i'm going to feel crappy all the time, I may as well be on the tx. Now, I REALLY feel crappy. My biggest side is the fevers. I am hoping my system will adjust by week 12. BTW, i am taking trazodone which helps a lot.
I had the sysmptoms you describe. They were gradually getting worse. I just thought if i'm going to feel crappy all the time, I may as well be on the tx. Now, I REALLY feel crappy. My biggest side is the fevers. I am hoping my system will adjust by week 12. BTW, i am taking trazodone which helps a lot.
I am also 1b w/vl of 2,000,000, M, age 69. Probably infected in 1983. On shot 3/48. My recent biopsy was 1/1. with slightly elevated alt/ast.
I had the sysmptoms you describe. They were gradually getting worse. I just thought if i'm going to feel crappy all the time, I may as well be on the tx. Now, I REALLY feel crappy. My biggest side is the fevers. I am hoping my system will adjust by week 12. BTW, i am taking trazodone which helps a lot.
I had the sysmptoms you describe. They were gradually getting worse. I just thought if i'm going to feel crappy all the time, I may as well be on the tx. Now, I REALLY feel crappy. My biggest side is the fevers. I am hoping my system will adjust by week 12. BTW, i am taking trazodone which helps a lot.
ha ha, one more thing then I promise I'll shut up unless you ask me a question...I do meditation and hypnosis tapes, etc to work on my mind too, I think illness can linger there in our thoughts as well and we have to do everything we can do to remain positive, whether we treat or not...most probably especially when you treat...
sorry, I'm busy right now so I can't finish a post:) what I do to ward off symptoms, etc...is I eat extremely well, try to get as much exercise as I can, I do take a regimen of supplementation, sometimes stopping it to give my filtering organs a rest...you know, just keep a "liver friendly" lifestyle...no smoking, drinking, eating a lot of junkfood, etc..."I" think this has served me well for having this over 30 years now, but of course, there are other elements at play as well...like your genetics, etc...I am in no way saying to just rely on this liver friendly lifestyle and not treat, I'm not saying that at all (you can get in trouble here advocating something for someone else)...this is what I do till i treat...and I'm sure I'll be doing this afterwards...I hope you have the greatest success...
also forgot to say, that one of my doc's told me that the reason I'm getting symptoms is that my immune system is trying it's best to fight off the disease (I do have relatively low liver damage and my viral load has never been over 200,000)and in those times, it's putting up a huge fight against the hep...
this is kinda what happens when we get a flu virus, and the symptoms occur there, the body is fighting off the flu...cept with me of course, the virus never goes completely away, dag-nab-it...this disease seems to play out differently in many people, with some people never getting any symptoms at all, even though they have cirrhosis...and then there are the people with low liver damage who don't get any symptoms at all either...trippy disease is all I gotta say...be well...
this is kinda what happens when we get a flu virus, and the symptoms occur there, the body is fighting off the flu...cept with me of course, the virus never goes completely away, dag-nab-it...this disease seems to play out differently in many people, with some people never getting any symptoms at all, even though they have cirrhosis...and then there are the people with low liver damage who don't get any symptoms at all either...trippy disease is all I gotta say...be well...
the way I manifest this disease is mostly through "flare-ups" where I'll have some of the symptoms you mentioned for about a month (or less) , or a little longer, then they will abate...each flare up will have about the same symptoms, maybe with a few more then you mention...the only one that stays with me all the time is the fatigue, but that may also be from menopause, I really think the menopause and hep are tag-teaming me, maybe with one making the other worse...I haven't had a flare-up in a long time, knock on wood, over a year....the weakness in the voice, to me, comes from my general weakness during one of these times, I also get a kind of IBS, night sweats (different from hot flashes, already went through them) this is gross, but unformed stools, a whole raft of symptoms...
but I'm only talking about me here, there's no way I can know what youre going through, or why exactly...that's up to your doctor, though I will admit that doctors don't always like to discuss symptoms, it's something they can't really quantify in every case...or at least that's been the case with me...
I have talked or knew of other people who get these flare ups, but they don't seem to be common...most people I know of just get some chronic symptoms that are there most of the time, is this what youre experiencing? Anyway, the best to you - hope you'll knock this sucker to Kingdom Come! Be well...
but I'm only talking about me here, there's no way I can know what youre going through, or why exactly...that's up to your doctor, though I will admit that doctors don't always like to discuss symptoms, it's something they can't really quantify in every case...or at least that's been the case with me...
I have talked or knew of other people who get these flare ups, but they don't seem to be common...most people I know of just get some chronic symptoms that are there most of the time, is this what youre experiencing? Anyway, the best to you - hope you'll knock this sucker to Kingdom Come! Be well...
I like you also 1b with at last count 3 mil viral load. I have also had the virus since about 80. I suspect I got the virus with a shared coke straw. I have none of the sympoms you discribe. This virus treats everyone different and there is no answer for it. It could be the amount of virus received at time of infection has something to do with it. I suspect it is in the Genes and maybe that is where the answer lies. Wish you the best.
Ron
Ron
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