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Medical Forum / Diseases and Disorders / Hepatitis / May 2008Geno type testing
My sister found out today from donating blood that she has HepC. The test results do not list genotype. I am guessing the test they do for donating blood must not be a involved as finding out genotype. She will follow up by seeing a doctor, but I would have sure like to have known what genotype she has. She said that she did IV drugs with only her husband many years ago. I know it doesn't matter, but I sure hope she doesn't have the same genotype I have for two reasons. The first is hope that she didn't get if from me when we were young. She has mashed my pimples and I am sure she has used things like nail clippers I have used. The second reason is that my genotype is one of the harder ones to respond to treatment, but not impossible, because I cleared after two years of treatment. >My sister found out today from donating blood that she has HepC. > [quoted text clipped - 18 lines] >respond to treatment, but not impossible, because I cleared after two >years of treatment. I'm pretty sure standard HCV blood testing for donated blood is only for antibodies - so there's no way they'd know if she's even currently infected or not, never mind the genotype. http://www1.givebloodgivelife.org/medical/testing/ http://www.givelife2.org/donor/bloodsafety.asp As for how she got it, I'd say it's *much* more likely she got it from IVDA then nail clippers or mashed pimples. While she's waiting for viral load and genotyping, you can both hope she managed to clear the virus on her own. In the mean time, among many other questions, she might want to ask her husband if has he been tested for HCV, and if so, was he positive, and what genotype was he? Good luck to her. If she's positive, hopefully she's a G2... /greyhackles Don't blame yourself if the genotype is the same as you. Most people have genotype 1. While she may have only shared a needle with her husband that is probably not so for him as well. I also found out about my HCV infection through a blood donation and it was just an antibody test that was confirmed by qualitative, quantitative, and genotype. Don > Don't blame yourself if the genotype is the same as you. Most people > have genotype 1. While she may have only shared a needle with her [quoted text clipped - 4 lines] > > Don Yeah, hopefully there is still a chance that she is negative. Thanks > Don't blame yourself if the genotype is the same as you. Most people > have genotype 1. While she may have only shared a needle with her [quoted text clipped - 4 lines] > > Don Goodmorning, Hi, I am Pam Terry's sister and I have read everything but it confuses me. It has been 21 years since I was so stupid: My husband has been gone for 14 years so I can't blame him either. I don't blame my brother even if I do have the type he has, my care for him when he was sick was out of love and I would not hesitate to do everything all over again. I recieved blood in 1991 and again in 93 but Terry said by then they had starting testing blood, so I am pretty sure it came from sharing the needles and as stated I only shared them with my husband but not sure who he shared them with? I gave blood in 1991 and I guess at that time I was clean or they did not test it. Danny died in 93, so I have no answers. I will make a Dr. apponiment and let them test me and go from there? I guess I am not to worried about myself but I have two children one 19 and one 14 that I worry about. My daughter is donating blood so I guess it is safe to say she is clear. I can only be sad for them because there Dad is gone my brother is fighting this everyday so they worry now that they might loose there Mom! Thanks everyone for being gentle I know how this post can be. I haven't read up on this because most of it goes over my head i't really does'nt matter to me how I got it only if there is a fix for it and if it is doing damage to me? OK i'll shut up now Thanks Pam On Mar 27, 11:07 pm, Kozure Ookami <nob...@nowhere.org> wrote: > Don't blame yourself if the genotype is the same as you. Most > people [quoted text clipped - 9 lines] > > Don Goodmorning, Hi, I am Pam Terry's sister and I have read everything but it confuses me. It has been 21 years since I was so stupid: My husband has been gone for 14 years so I can't blame him either. I don't blame my brother even if I do have the type he has, my care for him when he was sick was out of love and I would not hesitate to do everything all over again. I recieved blood in 1991 and again in 93 but Terry said by then they had starting testing blood, so I am pretty sure it came from sharing the needles and as stated I only shared them with my husband but not sure who he shared them with? I gave blood in 1991 and I guess at that time I was clean or they did not test it. Danny died in 93, so I have no answers. I will make a Dr. apponiment and let them test me and go from there? I guess I am not to worried about myself but I have two children one 19 and one 14 that I worry about. My daughter is donating blood so I guess it is safe to say she is clear. I can only be sad for them because there Dad is gone my brother is fighting this everyday so they worry now that they might loose there Mom! Thanks everyone for being gentle I know how this post can be. I haven't read up on this because most of it goes over my head i't really does'nt matter to me how I got it only if there is a fix for it and if it is doing damage to me? OK i'll shut up now Thanks Pam =========== Hi Pam Just a brief note for now, others will have more for you soon :) It's very possible that IF you have HepC, you could have picked it up 21 years ago. It's a very slowly progressing virus, and can take decades before it really starts damaging your liver a lot. As far as I can determine, I probably had it for close to 30 years before I was diagnosed. Definitely follow through with a good doctor -- a hepatitis C clinic being the best route as they work with this virus all the time. You need a Hepatologist (or liver specialist) to get the most up-to-date care. I have/had the hardest type of HepC to treat -- type 1, never did find out my subtype :) Didn't really care. All I knew was that I had 'bugs' in me, hurting me, and I wanted em OUT! I did the current treatment of PegInterferon and Ribaviren for 48 weeks, and now I'm virus free for a year since end of treatment, plus about 36 more weeks during TX (I 'think' I first tested negative at 12 weeks into treatment) I wish I had a better memory! I have records of this stuff (somewhere) but the bottom line is that the treatment worked for me, I had fairly minimal side effects (though I had ZERO energy during and needed meds to boost my hemoglobin counts).... it's doable, it's worth it when it works, and it's even worth it when it doesn't work since usually the meds slow down or stop the viral activity at least during treatment and the liver has a chance to heal a bit and that can buy you some time til the next new meds come along to beat this thing.... I did recently have a scare, my initial 1 year blood test came back showing a very low number of active hepC virus. turned out to be a false positive, and follow-up blood work shows me as still negative but I was doing a little freaking out at the time! I'll get the tests repeated in 3 months just to be safe.. And regarding when and how you may have gotten the virus... many of us don't really know, and my feeling is that it really doesn't matter! We didn't set out on purpose to get it, and all we can do now is try to get rid of it! I can think of 'at least' 3 or 4 ways I might have been infected -- crazy teen-aged drug abuse, letting my friend pierce my ears with a needle and thread, the Rhogam I received after the birth of each of my 4 kids, a couple of really crummy dentists I had to deal with at the clinic I go to.... and I love Spidey's thought that it could even go back to when we were kids, lining up in school for those production-line immunizations they were administering back then through the schools.....and heaven knows how many other times/places I may have come into contact with infected blood. Teenagers don't think twice about sharing razors, removing splinters with a straightpin, unprotected sex (which is not that easy a way to contract the virus, btw)... but blood to blood contact is not as unusual as one may think. Heck, I used to (note the 'used to' part) have a friend who thought nothing of borrowing my tooth brush when she was here visiting.... and I didn't even know about that til she'd done it a few times! Can we all say "ewwwwww"? Don't beat yourself up trying to figure out 'how' or 'why'. It really doesn't matter except maybe to warn others to get tested. Just worry now about finding out where you stand, how much if any damage has been done to your liver, and whether or not you are a candidate for treatment at this point. Take care of yourself NOW, for your future, and leave the past where it belongs, there's nothing you can do now to change it anyway. So much for brief :) Good luck to you, and I really hope all this will wind up being for nothing and that you find that you do not have Chronic HepC, that the antibodies you are showing are from ancient history and the issue took care of itself long ago :) Sara > On Mar 27, 11:07 pm, Kozure Ookami <nob...@nowhere.org> wrote: > [quoted text clipped - 129 lines] > > Sara Sara, Thank you so much, I hope you continue to do weal. I am like you I don't care where it came from I can't change any of it any way right: Most say not to worry see the Dr. first, other than my brother it got him in the worst way but he has had a new liver almost 6 years, I can say he is doing good he still has alot of bad days there is alot that goes with that new part, some think new liver and your life is back to normal, does't work that way. My kids worry that I may have to go thru all of that. I can only say I will deal with whatever I have to it can't be changed. I feel great most of the time the days I feel bad I blame on age and kids LOL. Most say that the virus shows up in test but I may have been fighting it off and may not need any type of treatment but I will make a Dr appointment on Monday. I have meet him thru Terry and he seems to know his stuff. I will let you all know if you pray send one up for me and I will do the same for you. Thanks Pam "Pam" <Pamelablueeyes@peoplepc.com> wrote in message news:ace6baae-2d0f-41cd- (snipped) Sara, Thank you so much, I hope you continue to do weal. I am like you I don't care where it came from I can't change any of it any way right: Most say not to worry see the Dr. first, other than my brother it got him in the worst way but he has had a new liver almost 6 years, I can say he is doing good he still has alot of bad days there is alot that goes with that new part, some think new liver and your life is back to normal, does't work that way. My kids worry that I may have to go thru all of that. I can only say I will deal with whatever I have to it can't be changed. I feel great most of the time the days I feel bad I blame on age and kids LOL. Most say that the virus shows up in test but I may have been fighting it off and may not need any type of treatment but I will make a Dr appointment on Monday. I have meet him thru Terry and he seems to know his stuff. I will let you all know if you pray send one up for me and I will do the same for you. Thanks Pam ======== Will do :) Thanks, Pam. sounds like you have a great head on your shoulders about it all, you'll handle it like a champ. Glad to hear you are going to see a dr you feel good about. And tell Terry that now it's HIS turn to support YOU :) I'm betting you'll do well though and things will be much easier for you than they were for him. Please stay in touch, and feel free to vent, ask questions, whatever here. You can email me at this email address any time too, if you want to. Let us know how the dr appt goes, ok? and take it one day at a time. hugs Sara >Sara, > Thank you so much, I hope you continue to do weal. I am like you I [quoted text clipped - 5 lines] >normal, does't work that way. My kids worry that I may have to go thru >all of that. What I have tried to tell my sister is that 2 in 10 will clear the virus with no meds. Wiki says as many as 4 in 10. http://en.wikipedia.org/wiki/Hepatitis_C 1 in 10 will develop serious problems. The other 7 out of 10 I am not really sure how to classify. They may never know they are infected or will experience some degree of cirrhosis. Numbers sound about right? I try to tell her that 9 out of 10 will die "with" HepC and not "from" HepC. And new meds may be just around the corner. >>Sara, >> Thank you so much, I hope you continue to do weal. I am like [quoted text clipped - 32 lines] > > And new meds may be just around the corner. I don't do numbers :) but I'd think it's a fair bet that the majority of folks with hepC are being diagnosed because of the damage that's already been done to their livers, probably decades after they caught it. That's what happened to me... my liver enzyme numbers were high and my current dr decided to do another test to see if he could find out 'why' they were high... two doctors before him had noted that the numbers were a bit high, but they decided to "keep an eye on it". Anyway, they did the bloodwork and it came back positive for hepc. I had a biopsy and I had stage 2 fibrosis. In Pam's case, it wasn't a liver enzyme reading but antibodies that showed up when she was donating blood. I'm thinking maybe that's a good thing, and if she does have it, hopefully it's still fairly early and she'll have a great chance to be cured. As far as the 'with' and not 'from' statement, I guess I feel that the hepC causes the liver damage that leads to many very serious problems that can lead to death, so I can't really agree with that statement. I believe that anyone with HepC who is a candidate for tx and can tolerate it should try it... heck, it just might work and then you don't have to worry about waiting for the next new thing to come along. Try to take it a day at a time and not anticipate the worst here... She's got a good support system (you!) and hopefully she will find some help here too. IF she winds up with the virus, her chances are a lot better at this point in time than they would have been 5 or 10 years ago as far as treatment goes. They are finding out more every day about HepC treatments, and yes, new meds are on the horizon for those who can wait a couple years. I hope you get a chance to talk to the doctor too when she goes in -- make a list of questions you have, and stuff you need to have answers for for the kids. I think that might help you most of all, to just get some straight answers about some of these things that are bothering you. geeze it's late and I can't see straight any more :) I guess I should shut up and go to bed! Take care Sara >>Sara, >> Thank you so much, I hope you continue to do weal. I am like you I [quoted text clipped - 22 lines] > >And new meds may be just around the corner. I believe Wikipedia is way optimistic about spontaneous clearance. The best numbers I've read are between 20-25%. One thing that isn't mentioned enough is HCV affects more than just the liver. A raging immune system can cause all sorts of collateral damage, and "quality of life" effects may be widespread. There have been plenty of peeps here that reported they were no longer diabetic post-treatment, others that had "arthritic" pain greatly reduced, folks that battled chronic fatigue got better, and so on. So, yes, the majority of HCV+ folks will not die from their disease, but their lives may be significantly impacted just the same. Leaving aside the possibility of passing the untreated disease along to others....we only get to ride this merry-go-round one time, so there should be plenty of motivation to get rid of any disease that takes the fun out of the ride. As for the potential for new medications appearing in any short time: I wish that were true, but at best - keying off the sobering Vertex VX950 results, for instance - it doesn't look as promising as it may have a couple of years ago. Thus, we're still looking out at least 4 or 5 years before anything makes it out of trials that provides a significant improvement in bottom line results - never mind reducing the side effects of treatment... /greyhackles > Don't blame yourself if the genotype is the same as you. Most people > have genotype 1. While she may have only shared a needle with her [quoted text clipped - 4 lines] > > Don Don' Goodmorning, I was just wondering how often you have to go be tested if it just shows the antibody, what questions I should ask the Dr. I have an appointment on the 17th. I may not find out on that day since they will have to draw blood for the test, and I am not sure if they do this on site. Thanks Pam >> Don't blame yourself if the genotype is the same as you. Most people >> have genotype 1. While she may have only shared a needle with her [quoted text clipped - 12 lines] >do this on site. > Thanks Pam It only takes one qualitative viral load test to confirm an active infection. If that comes up negative, and if any exposure event was well in the past, there's not much point in repeating the viral load test in the future. There is very little chance that you will receive any viral load test results on the same day as the blood is drawn. It takes time to execute the test, regardless of where the lab is located... /greyhackles > >> Don't blame yourself if the genotype is the same as you. Most people > >> have genotype 1. While she may have only shared a needle with her [quoted text clipped - 24 lines] > > - Show quoted text - Hi, So your saying if my test come back negitive I will not ever have the virus I just carry the antibodies, which indicates I can not be a blood or organ donor. Thanks Pam >> >> Don't blame yourself if the genotype is the same as you. Most people >> >> have genotype 1. While she may have only shared a needle with her [quoted text clipped - 30 lines] >blood or organ donor. > Thanks Pam Yup, that's the short and long of it. Assuming the viral load test is of good sensitivity, if it comes back negative, you aren't harboring the active virus, and as long as you don't encounter any further exposure episodes, you won't become actively infected. Why we keep showing antibodies years after the infection has resolved, I really don't know. Why we cannot donate blood or organs is more clear: the societal bodies responsible don't want to take any chances. I can live with that. The irony of *that* is, I was originally infected with HCV from a blood donation, back in the early '70s when there weren't any HCV tests available... Cheers /greyhackles > >> >> Don't blame yourself if the genotype is the same as you. Most people > >> >> have genotype 1. While she may have only shared a needle with her [quoted text clipped - 49 lines] > > - Show quoted text - I am so sorry that you got this in that way, most of us here got it from being stupid, or thats what most of the indications are. Here I was trying to do a good thing to help someone. I am also an organ donor or was I guess I need to find out how to change this. Hopefully they check the donor parts before giving them to someone else, would make me wonder if the virus would come to life if they used our parts, I am sure I would not want that to happen to someone that got one of my organs. I am proud you are here because you sound like you know quite a bit of sound information on this matter, one question I do know to ask the Dr is my genotype? Thanks Pam Anything else I need to know? Funny I am sitting here and my little pom loves coffee so she is sharing a cup with me, wonder if I could give this to my little pets? > > >> >> Don't blame yourself if the genotype is the same as you. Most people > > >> >> have genotype 1. While she may have only shared a needle with her [quoted text clipped - 67 lines] > > - Show quoted Goodmorning, Sorry if I hurt anyones feelings with my last post. I did not mean to. I went to the Dr. but will not know anything until May 1st this is when I go back I answered no to all the questions that was asked, so I am still hopeful that I only carry the antibodies. He went over the medications I might have to take and as you know I am kinda aware of these, he let me know that there are several types so I guess that will be what I need to know next, which I have. Everyone have a great day, I have to get ready for work fun,fun..... Thanks Pam (snipped) Goodmorning, Sorry if I hurt anyones feelings with my last post. I did not mean to. I went to the Dr. but will not know anything until May 1st this is when I go back I answered no to all the questions that was asked, so I am still hopeful that I only carry the antibodies. He went over the medications I might have to take and as you know I am kinda aware of these, he let me know that there are several types so I guess that will be what I need to know next, which I have. Everyone have a great day, I have to get ready for work fun,fun..... Thanks Pam ==================== Frustrating having to play the "hurry up and wait" game isn't it? We know how you feel, hang in there :) I can't think of anything you said in any posts that could have hurt anyone's feelings.. don't worry about it too much -- just say what you want to say and most of us will understand it in the proper context and do our best to be helpful. have a great day, too! and let us know what the doc has to say on May 1, k? Sara > (snipped) > [quoted text clipped - 31 lines] > > Sara Hi Everyone Weal today was the day my virus is active, damn little bugger, my next step is a liver biopsy. The first date is June 15 but they are going to call in the morning to see if she can get something sooner. I have type 1. Hope I can do this Terry went with me and sent me a link to paste on my labs. http://i31.tinypic.com/2qcmhde.jpg I hope I can still work, the Dr. said i would most likely take the meds for 6 months, I guess he came up with that thru what test he has, but we will know more when the other labs and biospy comes back, so here we go again hurry up and wait. I was ready to start them today, get the ball rolling so to speek. i know I have it so why put things off, I feel like maybe the longer I wait it may be doing more damage. Pam "Pam" <Pamelablueeyes@peoplepc.com> wrote in message (snipped) Hi Everyone Weal today was the day my virus is active, damn little bugger, my next step is a liver biopsy. The first date is June 15 but they are going to call in the morning to see if she can get something sooner. I have type 1. Hope I can do this Terry went with me and sent me a link to paste on my labs. http://i31.tinypic.com/2qcmhde.jpg I hope I can still work, the Dr. said i would most likely take the meds for 6 months, I guess he came up with that thru what test he has, but we will know more when the other labs and biospy comes back, so here we go again hurry up and wait. I was ready to start them today, get the ball rolling so to speek. i know I have it so why put things off, I feel like maybe the longer I wait it may be doing more damage. Pam ============== Hi Pam So sorry to read this news, I was sure hoping that you'd wind up testing negative for the virus. Now I hope you have an easy time of it, and kill that dragon first try. I'm a little concerned that the dr told you you'd be on the meds for only 6 months... if you are genotype 1, you will need to take the meds for 48 weeks. The biopsy is good to have to find out if you have any liver damage yet, and the other tests are important too :) You probably should get an eye exam before you start the meds too... Keep us posted! We're here for ya.. Sara Geeze, trying to remember all the things I had to do before I started TX. At any rate, don't be in a big hurry :) The virus is generally slow acting, and it takes years for it to do a lot of damage to your liver... Use this time to get some things done around the house, you sure won't feel like it once you are on the meds. Take it one day at a time, and start practicing drinking that water! :) > "Pam" <Pamelabluee...@peoplepc.com> wrote in message > [quoted text clipped - 48 lines] > meds. Take it one day at a time, and start practicing drinking > that water! :) Thanks, I had to laugh, he gave me a note to have my eyes checked and I told him I was already half blind mean old Dr. i wondered if having Hep affected my eyes but he did say that the meds could. I'm already getting old and wrinkled and damn now I got to get glasses LOL. I have another Dr appt. on the 6th they found a sist { can't spell} on my overyies { I need a dictonary} so whats next,. heck i need to go to a body shop and just order all new parts never knew getting old would be so much fun. lol On May 1, 8:27 pm, "Normin" <norminfishb...@aol.com> wrote: > "Pam" <Pamelabluee...@peoplepc.com> wrote in message > [quoted text clipped - 56 lines] > meds. Take it one day at a time, and start practicing drinking > that water! :) Thanks, I had to laugh, he gave me a note to have my eyes checked and I told him I was already half blind mean old Dr. i wondered if having Hep affected my eyes but he did say that the meds could. I'm already getting old and wrinkled and damn now I got to get glasses LOL. I have another Dr appt. on the 6th they found a sist { can't spell} on my overyies { I need a dictonary} so whats next,. heck i need to go to a body shop and just order all new parts never knew getting old would be so much fun. lol =================== Please send me the name of that body shop, I could sure use some new parts, too! :) Glad to see that you have a great sense of humor -- Keep laughing at life and things usually don't seem so bad no matter what's going on. Sara On Fri, 2 May 2008 00:10:26 -0400, "Normin" <norminfishbait@aol.com>, >On May 1, 8:27 pm, "Normin" <norminfishb...@aol.com> wrote: >> "Pam" <Pamelabluee...@peoplepc.com> wrote in message [quoted text clipped - 83 lines] > >Sara Had to smile at this. I actually do a little bit of work for a company called "The Body Shop". Ironically, the former owner of the company had hep-c. She did die a few months back - probaly unrelated to hep-c. > On Fri, 2 May 2008 00:10:26 -0400, "Normin" <norminfishb...@aol.com>, > in message ID <IrednYOjS_mqCYfVnZ2dnUVZ_sSln...@wideopenwest.com>, in [quoted text clipped - 95 lines] > > - Show quoted text - Hi, I have a list of new parts I would like to have if you can get the hook-up on them. I would like a boob job my look more like fog lights instead of head lights LOL. I need some new bumpers my are flat, and I could go for a little tummy tuck. Think you can help me out. LOL Thanks Pam When you get my list done Sara can let you know what she needs to... On Sat, 10 May 2008 21:11:27 -0700 (PDT), Pam <Pamelablueeyes@peoplepc.com>, in message ID <f8bb0a87-8db6-415c-9a83-94ee41090b38@w7g2000hsa.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote: >Hi, > I have a list of new parts I would like to have if you can get the [quoted text clipped - 4 lines] > Thanks Pam >When you get my list done Sara can let you know what she needs to... ... :-) I could do with a tummy tuck myself :-) (snipped)> > >Please send me the name of that body shop, I could sure use > >some [quoted text clipped - 15 lines] > > - Show quoted text - Hi, I have a list of new parts I would like to have if you can get the hook-up on them. I would like a boob job my look more like fog lights instead of head lights LOL. I need some new bumpers my are flat, and I could go for a little tummy tuck. Think you can help me out. LOL Thanks Pam When you get my list done Sara can let you know what she needs to... =========================== actually I have some parts I could donate... my spare parts could fill in your small and flat parts and we could be roomies for the tummy tucks? S > "Pam" <Pamelabluee...@peoplepc.com> wrote in message > [quoted text clipped - 48 lines] > meds. Take it one day at a time, and start practicing drinking > that water! :) Sara I was wrong Terry said I was genotype 2. His was one so mine is the eaiser type to treat, but Thanks for the advice about drinking water, either way they say the meds are bad, and I know I will have to take them. Did you work while you were on the meds are were you a stay at home Mom. I'm afraid that by your post if I'm not going to feel like cleaning the house I'm probably not going to feel like working either, but I am a single Mom so I will still have to do some house work. Sara what drug did you take don't remember if you said I do remember that you had told me you had to take yours for a year and are still clear. Once they determine you are clear then how often do you go for a check-up. I know I am thinking to far ahead but I like to kinda know my path from here on out, that is if they get my dragon the first time.. Thanks for being here with me to by the way. Pam (snipped) Sara I was wrong Terry said I was genotype 2. His was one so mine is the eaiser type to treat, but Thanks for the advice about drinking water, either way they say the meds are bad, and I know I will have to take them. Did you work while you were on the meds are were you a stay at home Mom. I'm afraid that by your post if I'm not going to feel like cleaning the house I'm probably not going to feel like working either, but I am a single Mom so I will still have to do some house work. Sara what drug did you take don't remember if you said I do remember that you had told me you had to take yours for a year and are still clear. Once they determine you are clear then how often do you go for a check-up. I know I am thinking to far ahead but I like to kinda know my path from here on out, that is if they get my dragon the first time.. Thanks for being here with me to by the way. Pam ============= Ah, ok :) Genotype 2 is only 24 weeks of TX, hopefully that will make it somewhat easier for you! Yes, the meds can still be pretty rough, but half the time is a good thing :) I didn't work while on the meds (or before,either). I was lucky that I could be lazy when I wanted to, and do more when I felt better. Mostly I just was really really tired during tx and slept a lot. I was able to do some housework, just didn't do any more than I felt like, and was pretty lazy about it all. I cooked about half the week, got carryout the rest.. I did go grocery shopping and ran other errands, and did laundry for 5 people, but I did more toward the end of the week and I tried to take it easy the first few days after my shot. I was on Peg-Intron and the riba, plus celexa, and xanax when needed. They started me on procrit after a few weeks since my red blood counts went down a bit and I am sure that helped my energy levels somewhat. My doctor checked my viral load at end of treatment, then at 3 months post tx (I think!) and again at 6 months then at one year. I got a funky reading when I went for the 1 year check, so they redid it and it came out negative, but I'll probably get it done again in a few months to be sure.... and then I am not sure how often they'll want to check it. I don't think there are a lot of doctors that want to promise a cure at this point, the treatment is still 'new' enough that they aren't sure yet if some people might relapse after a few years (or that's my understanding) so I'll feel better if I get checked every so often for a while at least. I do know that many many people do work while on treatment. You can do some things to help like do your shot on friday night, giving you the weekend to take it easy, and hopefully by monday or tuesday you'll be feeling better.... what kind of job do you have? If it doesn't require a lot of physical exertion you probably will do ok. I was thinking more of any projects you might have had planned for the house when I said get some things done now cause you won't feel up to it later. Minor housekeeping you should be fine with tho, and your kids should be able to help out too. Just remember when you start feeling a bit light headed or nauseaus, you need to drink a bunch of water to make that feeling go away. At least that really did help me, especially when I was out and about, grocery shopping or whatever that took extra energy to do. past my bedtime :) hopefully some of the other folks who've been here a while will pop in and share their experiences with you, especially some who were geno 2. take care Sara > (snipped) > [quoted text clipped - 79 lines] > take care > Sara Sara Thanks, I did have alot planned to do around here but nothing I could not put off, but I will get started on some of it mainly just extra cleaning like the attic and the garage. I will go ahead next weekend and work on the pool for the kids, Brittney is 19 so I hope I can count on her to come help me out some and Daniel is 14 so he has said he will help. Yes my job is physical, I was just promoted to co-manager, I have a two concept fast food store that I have to run and we always have workers that do not show up so I have to make up for several people most of the time, and I am on my feet for 10 to 12 hours a day, my boss thinks I am being tested for cancer wasn't sure how the company would react to my haveing Hep C, not sure how to get around it once I start the meds. We are open 24-7 so I work weekends, my boss is a real nice guy so he may work something out for me to have the same two off days for the term of my treatment, so I can rest. I can take a leave up to six months but my pay would stop, I will just have to talk with him about all this once I get underway, and I hate water but I guess it will become my best friend now. As for the humor that may not last. I'm sure there will be days to come that all I want to do is cry, my in-laws have said they will also be there for me I married into a great family and they still treat me like I am there blood, and I will have great support from my brother and kids, so I think I will be just fine, and maybe God will be on my side as weal. I also have my other family and that is all of you, Thanks for being here, and Sara thanks for all your help as well, I will remember what you tell me, maybe. I think my brain is short curiting now as well LOL. Love and Prayers Pam On Thu, 1 May 2008 18:59:01 -0700 (PDT), Pam <Pamelablueeyes@peoplepc.com>, in message ID <7ad19758-0859-4d28-bf59-53eac60730b9@l42g2000hsc.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote: >Sara > I was wrong Terry said I was genotype 2. His was one so mine is the [quoted text clipped - 12 lines] >first time.. Thanks for being here with me to by the way. > Pam Genotype 2? That is a major result. Never any guarantees of course but if you must have hep-c, that's the genotype to have. Shorter tx and much better chance of shifting the virus. > On Thu, 1 May 2008 18:59:01 -0700 (PDT), Pam > <Pamelabluee...@peoplepc.com>, in message ID [quoted text clipped - 24 lines] > > - Show quoted text - Goodmorning, Well I go this morning to have my eyes checked, not sure if it is related to the Hep C but I have headaches every day may just be straining my eyes. Don't have to wait long I go Thursday for my biospy, then back to the Dr. on the 16th to find out where we go from there. Just wanted to keep you all posted. Pam (snipped) Goodmorning, Well I go this morning to have my eyes checked, not sure if it is related to the Hep C but I have headaches every day may just be straining my eyes. Don't have to wait long I go Thursday for my biospy, then back to the Dr. on the 16th to find out where we go from there. Just wanted to keep you all posted. Pam ========= Hi Pam things do seem to be moving fairly quickly for you.. good luck at today's appointment, and extra good luck at the biopsy. Let us know how it goes, ok? both things :) hope the headaches clear up, I know how miserable that can be. Sara > (snipped) > [quoted text clipped - 20 lines] > > Sara Goodmorning, Eyes checked, glass ordered, biospy done yesterday morning. I almost backed out on the biospy, found out my insurance does not cover any type of out patient procedures my only other choice was to wait until the end of the year when we sign up to change my coverage, but the Dr. informed me he would not start treatment without the biopsy, so I went ahead with it, Terry said it was a piece of cake, I was a little nurvous, when it was over I told him I would know to order pie the next time LOL. Not the most pleaseant thing to have done but I made it, now I go back to the Dr. on the 16th to find out the damage and the next step to take. I have until Monday to recover the Dr gave me a note to cover today and I was off Sat and Sun so I have a few days to lay around. I hav a little light housework to do but my son said he would vacum for me when he got home today. I wonder if I need to have him checked, he has not been feeling to good the past few weeks, says he has body aches and pains, so now I worry that i may have passed it to him at birth, I know my daughter is clear because she is a blood doner but he is only 14, they both are ready to sign up if this turns out badly for me. I tell them just to pray that all I need is treatment and that the drugs will work for me. Thanks, Hope everyone has a great day' Pam (snipped) Goodmorning, Eyes checked, glass ordered, biospy done yesterday morning. I almost backed out on the biospy, found out my insurance does not cover any type of out patient procedures my only other choice was to wait until the end of the year when we sign up to change my coverage, but the Dr. informed me he would not start treatment without the biopsy, so I went ahead with it, Terry said it was a piece of cake, I was a little nurvous, when it was over I told him I would know to order pie the next time LOL. Not the most pleaseant thing to have done but I made it, now I go back to the Dr. on the 16th to find out the damage and the next step to take. I have until Monday to recover the Dr gave me a note to cover today and I was off Sat and Sun so I have a few days to lay around. I hav a little light housework to do but my son said he would vacum for me when he got home today. I wonder if I need to have him checked, he has not been feeling to good the past few weeks, says he has body aches and pains, so now I worry that i may have passed it to him at birth, I know my daughter is clear because she is a blood doner but he is only 14, they both are ready to sign up if this turns out badly for me. I tell them just to pray that all I need is treatment and that the drugs will work for me. Thanks, Hope everyone has a great day' Pam ============= Hi Pam Thanks for keeping us up-to-date. Glad you got the biopsy done but sorry it's going to cost you :( Just doesn't seem right that your insurance won't cover something like that. And I agree with you -- give me pie! I did not like getting that biopsy done, and am glad I don't have to do that again any time soon! I do agree with you that you should have your son tested for the virus. Most likey he doesn't have it -- none of my 4 kids did -- but better to know for sure than to make assumptions! And you'll feel better when you find out that he's fine :) Enjoy your quiet long weekend :) Sara > (snipped) > [quoted text clipped - 57 lines] > Enjoy your quiet long weekend :) > Sara Question' Got up at 7 this morning I have drank about a pot of coffee and have had several cigarretts plus one pina-coloda LOL just kidding, I feel kinda sick at my stomach, I ate and sat down to rest thought i may have been doing a little to much house work or drank a little to much coffee, but I am still feeling a bit quezzy. I have a real bad cough so I did take a dose of Delsm this morning, should I call the Dr or just wait to see if it passes. I am also having the damn hot flashes, I only wonder if the cough could be putting to much strain on the liver, this is kinda getting personal but I have went # 1 and # 2 this morning and both are fine no blood in either? Thanks Pam Question' Got up at 7 this morning I have drank about a pot of coffee and have had several cigarretts plus one pina-coloda LOL just kidding, I feel kinda sick at my stomach, I ate and sat down to rest thought i may have been doing a little to much house work or drank a little to much coffee, but I am still feeling a bit quezzy. I have a real bad cough so I did take a dose of Delsm this morning, should I call the Dr or just wait to see if it passes. I am also having the damn hot flashes, I only wonder if the cough could be putting to much strain on the liver, this is kinda getting personal but I have went # 1 and # 2 this morning and both are fine no blood in either? Thanks Pam ============ Hey Pam geeze I don't know... (tho you may want to start cutting back on the caffeine and start getting used to drinking more water! (grin) ) that much coffee might upset your stomach, plus if you have phleghm draining into your stomach that's enough to make you feel queasy too... but you are supposed to take it easy today, not be cleaning your house! If you keep feeling crummy, it can't hurt to call and check with the dr, can it? Sara > Question' > Got up at 7 this morning I have drank about a pot of coffee and [quoted text clipped - 35 lines] > > Sara Hi, I did'nt go to the Dr. I just layed off the coffee and I layed down for a while. It's hard to do when you know there are things to be done, but I put them off until later. Happy Mothers Day Sara Thanks' Pam Lots snipped... > I'm a little concerned that the dr told you you'd be on the meds for only > 6 months... if you are genotype 1, you will need to take the meds for 48 > weeks. The biopsy is good to have to find out if you have any liver > damage yet, and the other tests are important too :) You probably should > get an eye exam before you start the meds too... Someone please talk to me about this last comment on the eye exam. My eye sight has been fading dramatically in the last couple of years. I only found out about my HCV about five months ago. Is there a relationship between HCV and eyesight? I've been chalking it up to joining the fourty somthing crowd up to now but started wondering about the Hep lately. Been meaning to set up an appointment with the eye doctor but life has been busy and all that. KJ >Lots snipped... > [quoted text clipped - 13 lines] > >KJ No relationship between untreated HCV and eye health, that I'm aware of anyway. The advice about getting a pre-treatment eye exam is to establish baseline eye health before the possible side-effects of treatment arise. Through my forties my eye sight "changed" pretty dramatically - there was a period where it was declining faster than I could keep up with my eyeglass prescriptions. My spouse experienced similar changes, so I'd be inclined to believe you're just getting old with the rest of us ;-) Find the time to get that eye exam before starting therapy. It is important. Cheers /greyhackles > >Lots snipped... > [quoted text clipped - 32 lines] > > - Show quoted text - Goodmorning, I need to go pick up my glasses this morning, my Dr herself called me yesterday and has me ready to start treatment Monday. I also had to get the meds for a Hep A. and Hep B. shot, she said to bring it with me and she would give me the shot. Sara I took your advice and cleaned my yards and cleaned the pool out, I have been busy the last two days. I also talked to my boss about working first shift every Mon. so that I can take the shot on that day each week, now I need all your prayers the fun is fixing to start. Terry said that the meds can cause you to be an a-hole so on my bad days I will try to stay away from here. He has tried not to go into detail about all the side effects so that I want get them from reading. I still have a positive out-look on this, I keep telling myself six months and with alot of prayers it will be over. This is not something I can start and then back out of, or the dragon will win, and I am a hell of a fighter. I have read all the stuff she has given me to read and done all the things she has asked me to. I really like my Dr. she studyed at Emory University so Hep B and C are her specialitys. I told Terry thats the first Dr I have ever had that hugged me before I left her office and she personallly called me, usually it's a nurse. Anyway got to get ready to go to work, hope everyone has a great day and a wonderful and safe holiday weekend. Pam > >Lots snipped... > [quoted text clipped - 32 lines] > > - Show quoted text - Hi, Yep getting old needed the glasses years ago but just started wearing reading glasses. I am 47 so nearly old as dirt LOL Pam > >My sister found out today from donating blood that she has HepC. > [quoted text clipped - 36 lines] > > /greyhackles Her husband was killed in a car accident. If you clear it on your own doesn't that happen soon after you discover you have it? She said she did iv drugs a few times over 10 years ago. I gave her a link to the group. Maybe she will come in and let us knwo how she feels about this stuff. Thanks >> >My sister found out today from donating blood that she has HepC. >> [quoted text clipped - 48 lines] > >Thanks It is true that clearance usually - perhaps even "almost always" - occurs within the first 6 months or so of infection. That said, I believe anti-HCV antibodies persist pretty much forever. Sad story about the husband. May he rest in peace... /greyhackles > >> >My sister found out today from donating blood that she has HepC. > [quoted text clipped - 56 lines] > > /greyhackles I will tell her that the antibodies don't necessarily indicate that she has HepC. That would be something to ease her mind a little. Thanks, as always, for your words of wisdom. > I will tell her that the antibodies don't necessarily indicate that > she has HepC. That would be something to ease her mind a little. > > Thanks, as always, for your words of wisdom. That's right. Even people that clear the virus cannot be organ or blood donors for the rest of their lives. The simple test done at the Red Cross does not differentiate between antibodies, the parts of inactive virus left in the system, and active and robust infection. From what I understand, up to 20% of people contacting the virus achieve a spontaneous rejection/clearance of the 'live' virus, yet they too, will continue to test positive on the simple test. This apparently happens during the acute phase of infection reaction. cactus jammies ------------------- > > I will tell her that the antibodies don't necessarily indicate that > > she has HepC. That would be something to ease her mind a little. [quoted text clipped - 11 lines] > > cactus jammies ------------------- I tested negative for live virus for ten years and now it was 2.8 million copies. After my first test in "93 they said that there was no live hcv but positive for exposure. It took many years for the live virus to show up on the test. Maybe because the tests are better now? Jamffer Not to put too fine a point on it but antibodies aren't parts of inactive virus left in the system. They are protiens produced by the body's white blood cells. http://en.wikipedia.org/wiki/Antibody "Terry" <kilowatt@charter.net> wrote > I will tell her that the antibodies don't necessarily indicate that > she has HepC. That would be something to ease her mind a little. > > Thanks, as always, for your words of wisdom. That's right. Even people that clear the virus cannot be organ or blood donors for the rest of their lives. The simple test done at the Red Cross does not differentiate between antibodies, the parts of inactive virus left in the system, and active and robust infection. From what I understand, up to 20% of people contacting the virus achieve a spontaneous rejection/clearance of the 'live' virus, yet they too, will continue to test positive on the simple test. This apparently happens during the acute phase of infection reaction. cactus jammies ------------------- Hey Bob and all, You know, that truth crossed my mind just before I posted what I did. Yes of course antibodies are generated by the wbc because a specific type of alien substance has triggered the immune system defences. Then I thought to myself, what the heck, lets just take a shortcut and assume (ahem) that the reason there are antibodies is because of the RNA junk left in the body. of course it is not accurate, but otherwise do you think it is safe to assume so? sorry if I muddied the waters for anyone cactus jammies > Not to put too fine a point on it but antibodies aren't parts of inactive > virus left in the system. They are protiens produced by the body's white [quoted text clipped - 23 lines] > > cactus jammies ------------------- On Mar 28, 9:23�am, "Cactus Jammies" <cactusjamm...@retinal.circus.orb> wrote: > > I will tell her that the antibodies don't necessarily indicate that > > she has HepC. �That would be something to ease her mind a little. [quoted text clipped - 3 lines] > That's right. �Even people that clear the virus cannot be organ or blood > donors for the rest of their lives.<< Are you sure about the organ donors part? I found out I had hep c while testing to donate a kidney. The saintly person who was helping me find a match told me that after my tx was through, she could help me find a matched donee who had had (or still had) hep c. True? False? Depends? >On Mar 28, 9:23?am, "Cactus Jammies" ><cactusjamm...@retinal.circus.orb> wrote: [quoted text clipped - 15 lines] > >True? False? Depends? That's the way I heard it. But I think standards are different provided where you go. Note this recent 2007 incident in Chicago where people contracted HIV and HepC from an organ donor considered high risk http://www.newsinferno.com/archives/2031. The situation today is much better than prior to 1992 with regard to infections from infected blood and organs but not perfect. Maybe some people might prefer a possibly tainted organ than none at all but with the potential for expensive lawsuits who would want to be involved in that? There is also much not understood about viruses like HCV and questions about whether the virus is completely gone after a SVR is achieved. The American Red Cross doesn't want your blood if you have ever injected yourself with drugs not prescribed by a physician (snorting cocaine ok though provided 1 year deferral), are a man and ever had sexual relations with another man, have lived in Western Europe since 1980, had sex with someone in the above list... They don't even want your blood if you have comitted the crime of having sex with someone who has lived in Western Europe since 1980. However you can donate if you have "genital herpes" provided lesions whave cleared 4 weeks ago. They got a pretty big list your supposed to read and I guess you sign off that you are compliant with the list. http://www.bloodbook.com/donr-requir.html Lol, lived in England/UK between 1980 - 1999? Thanks, but no thanks... I'll bet they will take your blood in the UK though and probably other blood banks in the US. It would seem the standards for blood an organ donations very from place to place. >>On Mar 28, 9:23?am, "Cactus Jammies" >><cactusjamm...@retinal.circus.orb> wrote: [quoted text clipped - 15 lines] >> >>True? False? Depends? Depends! how about this New Illinois Law Permits Organ Donors With H.I.V. http://query.nytimes.com/gst/fullpage.html?res=9B05E2DF153AF935A25754C0A9629C8B63 |
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