Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 That does seem a bit odd now that you mention it if they are negative continue as normal yet if positive well that does seem a bit late to worry. His wife has had the blood drawn we have not gotten the results or not that I have been informed yet. This certainly raises more questions to pose at the next doctor appointments But given what Greg was told I can see why he has been so despondent and his wife needs to know the real facts so they can make good choices. > > There are treatments that can put the Hep in > > remission..It has worked for > > many in this group..His wife may not ever contact > > it. Some of us have been > > married for many years and our spouses do not have > > it..The chance of > > contacting it sexually is very slim..If you have > > faith then put all your > > wrries in the Lord's hands..Remember everything > > happens for a reason > > regardless if we like the outcome or not..It is not > > us to judge just to > > accept what is given to us..He doesn't give us > > anymore than we can bear..I > > know it seems like we can't but we do..I remember > > when I found out I just > > wated to scream and hit something and felt I would > > never have a relationship > > again but I found my husband and he accepted me and > > my illness..I know my > > words may not console you right now but in time you > > will be able to see > > things in a different light..We all have..Just know > > you can write us anytime > > to cry...fuss...curse..or laugh..We are here for you > > and your son.Right now > > the thing to do is get him to a liver Dr. and let > > him handle things and > > remember to ask alot of questions..What they can't > > answer we usually can..... > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 tell your son and his wife to go make you some grandbabies...Like we told you earlier the Drs. don't know everything but all of our experience we share with you should beale to reassure you and your son..He is young and his enzymes are almost normal..Tell him to get busy in the baby making dept and not let this beat him..He is here to beat it..We call it Fighting the Dragon...We won't give up...I understand your worry but rest assured we would not steer you nor your son in the wrong direction... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Tell them not to stop the honeymoon now..Now they know what is going on to some point and will be able to deal with it..IT IS NOT A DEATH SENTENCE..It is a fight he is still so young enough to fight and win...I am 42...found out 2 years ago..and I have problems with treatment..So far I can't handle it..I was depressed about it for a while but I take it one day at a time..I change the things I can and accept the things I can't... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Tell your son the quicker he can join us himself the beter he'll feel..Girl I thought I was dying the first night I joined the group..I was so scared and just knew in my heart I was the only one going through this and low and behold I was sent all these angels in this group to wake me up and pick me up..I don't know where I'd be without them..Get your son on line but remember to tell him not to dwell on the fact he has Hep C but to dwell on the fact he will FIGHT IT... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 please share anythng we tell you with your son....That's why we were all put together..I told you there is a reason for everything and yes we have Hep but we are all here together for one another...Girl sometimes it don't even matter the time..Some of us can't sleep and are up at all hours..Some of us (like myself) am a late sleeper but I get back to ya like I have today and now I think it's time I hushed up...LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 No a biopsy and an ultrasound are completely different..A biopsy shows how much scarring if any has been done to the liver or chirrosis..Hey so I can't spell today just ignore it ok..Anyway a biopsy will show more than the ultrasound will.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I don't remember if you mentioned where you son lives..Maybe someone here in the group is from there or near it anyway and can be of more help to him.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I think the Dr he saw needs a swift kick in the pants!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 A biopsy they insert a probe & take a little scraping of the liver " not painfull at all. The ultrasound as you know is a picture . Terry --- kbwaltke <kbwaltke@...> wrote: > This is the first time I think I have smiled since > Greg called 2 weeks ago now Friday. Can someone > explain the difference between an ultrasound > of the liver and a biopsy? They did ultrasound > and said it was normal. But that is not a biopsy > is it? I also read something about viral count > and I know they didn't do that on him. Just the > sgpt sgot. and the Hep C test. That and told him > to call and attend this class to learn more about > this. Thats it. I feel at least like now I can > tell Greg that there is hope and there is treatment > and you need to ask if tests have not been done why > not > You have to know at least what questions to ask. > He was told he could live a long life if he never > drinks .. that was about it. > > > > > " Cure " is an elusive term. Long term data is > scarce. > > The picture I was painted goes like this. If I > respond > > to the treatment (which I did) I am in remission. > I > > will be retested in 6 mos. and if still negative > > tested again in 1 year. If still negative I will > be > > considered unlikely to ever be bothered by the > virus > > again. > > > > There is no reason grandchildren are not possible. > > While either one of them is on treatment they > cannot > > risk a pregnancy. Most of us have had children > while > > (unknowingly) suffering from this disease. My son > is > > 12 years old and I know I have had this at least > for > > 20 years (my first elevated liver enzymes were > > recorded, but ignored in 1982) I have not heard of > one > > case of the disease being passed on to the child. > > > > There are steps which must be taken to determine > if > > and when your son should start treatment. Mainly a > > liver biopsy, which will tell them the extent of > liver > > damage, if any. It was almost a year between the > time > > I was diagnosed and I went on treatment. The > treatment > > puts a strain on the body and mind, so there are > > certain conditions which would prevent the current > > preferred treatment to be advised. > > > > There are new and better treatments always coming, > so > > take heart. -dz- > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 This makes perfect sense to me. They need to know how healthy the liver is or is not. They say Greg is healthy right now as his sgpt and sgot were almost normal. But when this became an issue they were NOT normal at all. That says to me that his liver could have damage and we need to know one way or another for sure. > > > " Cure " is an elusive term. Long term data is > > scarce. > > > The picture I was painted goes like this. If I > > respond > > > to the treatment (which I did) I am in remission. > > I > > > will be retested in 6 mos. and if still negative > > > tested again in 1 year. If still negative I will > > be > > > considered unlikely to ever be bothered by the > > virus > > > again. > > > > > > There is no reason grandchildren are not possible. > > > While either one of them is on treatment they > > cannot > > > risk a pregnancy. Most of us have had children > > while > > > (unknowingly) suffering from this disease. My son > > is > > > 12 years old and I know I have had this at least > > for > > > 20 years (my first elevated liver enzymes were > > > recorded, but ignored in 1982) I have not heard of > > one > > > case of the disease being passed on to the child. > > > > > > There are steps which must be taken to determine > > if > > > and when your son should start treatment. Mainly a > > > liver biopsy, which will tell them the extent of > > liver > > > damage, if any. It was almost a year between the > > time > > > I was diagnosed and I went on treatment. The > > treatment > > > puts a strain on the body and mind, so there are > > > certain conditions which would prevent the current > > > preferred treatment to be advised. > > > > > > There are new and better treatments always coming, > > so > > > take heart. -dz- > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I would definitely find a new dr. There is no fault in this disease. Many people have no idea how they got it. Many people were infected by blood transfusions, because prior to the early 80's they could not test donated blood for hcv. -dz- --- kbwaltke <kbwaltke@...> wrote: > Thanks a million. I wish I even knew the questions > to ask. We are just past the numb stage heading into > kick the wall. I am thinking Greg got his tattoo in > 91. Just out of high school. So just around 10 years > The doctor told him how sick he gets and how long he > lives is up to him no alcohol... modify the caffine > drink 8 glasses of water a day and well I hate to > say > this but he suggested that it was Gregs doing he was > in > the mess he's in and to start making better choices. > Like Greg would have gotten the tattoo had it come > with a warning label of Hep C? NOT The more I > think > on all you have said, all of you so far, the more > angry > I am at the doctor. This attitude of your positive > and come see me when your sick is not appropriate at > all. > Rest assured I will be making suggestions to our son > to > get proactive in his care and find out the facts. > > > > > Welcome . You have come to the right place. > None > > of us here are doctors, but we have found that we > get > > more information from each other than we get from > the > > doctors. Hepatitis C has only been isolated since > the > > early 80's so many dr's are not too up to date on > it, > > especially the long term prognosis. > > > > If you search the internet there is much good > > information out there, but much of it is dated. > You > > have to be careful of that. Chances are slim that > his > > wife has contracted it. Neither my wife nor my > ex-wife > > have been infected with this disease. She should > be > > tested to be on the safe side. > > > > As you suspected the method of infection has > little > > impact on anything, it is more for the doctor's > > studies on the transmission of the disease than > > anything else. > > > > It is not a death sentence. There is treatment > > available which is somewhat difficult but do-able. > I > > have been through the treatment and am currently > in > > remission. Most of us have had this disease for > 15-20 > > years or more without knowing it. Your son's youth > > would imply that he hasn't had it too long, which > is a > > plus. They say the earlier you treat it the better > the > > odds of success. It is a slow-moving disease which > is > > in our favor. > > > > Ask all the questions you want, there are no dumb > > questions, we've all had them. Please ask away. > > Chances are one or more of us have been through > what > > you are wondering about. -dz- > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 An ultrasound can give them an idea of possible liver damage, but a biopsy is the only sure test as far as I know. I believe they did an ultrasound on me to locate the exact position of my liver before they did the biopsy. They drew a little target on me so they would hit the right spot.. If he has only tested for hcv antibodies, it is still possible that he no longer has the virus (about 15-20% clear it on their own). They need to test for the presence of the virus itself to prove whether he still has it or not. The virile count is used to determine where you are starting out (a high or low virile count does not necessarily coincide with the amount of liver damage) , and as it is repeated a couple of times, whether the treatment is working. -dz- --- kbwaltke <kbwaltke@...> wrote: > This is the first time I think I have smiled since > Greg called 2 weeks ago now Friday. Can someone > explain the difference between an ultrasound > of the liver and a biopsy? They did ultrasound > and said it was normal. But that is not a biopsy > is it? I also read something about viral count > and I know they didn't do that on him. Just the > sgpt sgot. and the Hep C test. That and told him > to call and attend this class to learn more about > this. Thats it. I feel at least like now I can > tell Greg that there is hope and there is treatment > and you need to ask if tests have not been done why > not > You have to know at least what questions to ask. > He was told he could live a long life if he never > drinks .. that was about it. > > > > > " Cure " is an elusive term. Long term data is > scarce. > > The picture I was painted goes like this. If I > respond > > to the treatment (which I did) I am in remission. > I > > will be retested in 6 mos. and if still negative > > tested again in 1 year. If still negative I will > be > > considered unlikely to ever be bothered by the > virus > > again. > > > > There is no reason grandchildren are not possible. > > While either one of them is on treatment they > cannot > > risk a pregnancy. Most of us have had children > while > > (unknowingly) suffering from this disease. My son > is > > 12 years old and I know I have had this at least > for > > 20 years (my first elevated liver enzymes were > > recorded, but ignored in 1982) I have not heard of > one > > case of the disease being passed on to the child. > > > > There are steps which must be taken to determine > if > > and when your son should start treatment. Mainly a > > liver biopsy, which will tell them the extent of > liver > > damage, if any. It was almost a year between the > time > > I was diagnosed and I went on treatment. The > treatment > > puts a strain on the body and mind, so there are > > certain conditions which would prevent the current > > preferred treatment to be advised. > > > > There are new and better treatments always coming, > so > > take heart. -dz- > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I don't know if the doctor is his choice or not with this HMO but my suggestion will be for him to request it . I thought that was very strange for the doctor to act like this was somehow his fault. > > > Welcome . You have come to the right place. > > None > > > of us here are doctors, but we have found that we > > get > > > more information from each other than we get from > > the > > > doctors. Hepatitis C has only been isolated since > > the > > > early 80's so many dr's are not too up to date on > > it, > > > especially the long term prognosis. > > > > > > If you search the internet there is much good > > > information out there, but much of it is dated. > > You > > > have to be careful of that. Chances are slim that > > his > > > wife has contracted it. Neither my wife nor my > > ex-wife > > > have been infected with this disease. She should > > be > > > tested to be on the safe side. > > > > > > As you suspected the method of infection has > > little > > > impact on anything, it is more for the doctor's > > > studies on the transmission of the disease than > > > anything else. > > > > > > It is not a death sentence. There is treatment > > > available which is somewhat difficult but do-able. > > I > > > have been through the treatment and am currently > > in > > > remission. Most of us have had this disease for > > 15-20 > > > years or more without knowing it. Your son's youth > > > would imply that he hasn't had it too long, which > > is a > > > plus. They say the earlier you treat it the better > > the > > > odds of success. It is a slow-moving disease which > > is > > > in our favor. > > > > > > Ask all the questions you want, there are no dumb > > > questions, we've all had them. Please ask away. > > > Chances are one or more of us have been through > > what > > > you are wondering about. -dz- > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Are you saying that he may not even have the virus? Just antibodies? I will have him go back and find that out immediately... I can't believe the care level he has received on this whole thing. No biopsy was even mentioned and he did not even know what I was asking when I asked him if he knew what his viral load was he said almost normal again he gave me his sgpt and sgot numbers he said that was the only thing they'd tested for other than he was positive for Hep. C thats all they told him and they don't treat it till he is much worse and needs it. Thats it.... > > > " Cure " is an elusive term. Long term data is > > scarce. > > > The picture I was painted goes like this. If I > > respond > > > to the treatment (which I did) I am in remission. > > I > > > will be retested in 6 mos. and if still negative > > > tested again in 1 year. If still negative I will > > be > > > considered unlikely to ever be bothered by the > > virus > > > again. > > > > > > There is no reason grandchildren are not possible. > > > While either one of them is on treatment they > > cannot > > > risk a pregnancy. Most of us have had children > > while > > > (unknowingly) suffering from this disease. My son > > is > > > 12 years old and I know I have had this at least > > for > > > 20 years (my first elevated liver enzymes were > > > recorded, but ignored in 1982) I have not heard of > > one > > > case of the disease being passed on to the child. > > > > > > There are steps which must be taken to determine > > if > > > and when your son should start treatment. Mainly a > > > liver biopsy, which will tell them the extent of > > liver > > > damage, if any. It was almost a year between the > > time > > > I was diagnosed and I went on treatment. The > > treatment > > > puts a strain on the body and mind, so there are > > > certain conditions which would prevent the current > > > preferred treatment to be advised. > > > > > > There are new and better treatments always coming, > > so > > > take heart. -dz- > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 This will be a decision that they will have to make together but at least this does change the questions from what the doctor told them. ..... I know they wanted a baby had started looking at houses with a nursery in mind. Well now maybe there is at least hope.... > tell your son and his wife to go make you some grandbabies...Like we > told you earlier the Drs. don't know everything but all of our experience we > share with you should beale to reassure you and your son..He is young and his > enzymes are almost normal..Tell him to get busy in the baby making dept and > not let this beat him..He is here to beat it..We call it Fighting the > Dragon...We won't give up...I understand your worry but rest assured we would > not steer you nor your son in the wrong direction... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I will but I am sure its going to take more than mom telling them to be reassuring. But thats ok ... > Tell them not to stop the honeymoon now..Now they know what is going on to > some point and will be able to deal with it..IT IS NOT A DEATH SENTENCE..It > is a fight he is still so young enough to fight and win...I am 42...found out > 2 years ago..and I have problems with treatment..So far I can't handle it..I > was depressed about it for a while but I take it one day at a time..I change > the things I can and accept the things I can't... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I am going to have to figure something out on that. The modem died in their puter and the puter won't recognize it so .... well maybe we will take it and get it fixed or maybe have to get a different puter but this seems like a necessity to me now. > Tell your son the quicker he can join us himself the beter he'll feel..Girl I > thought I was dying the first night I joined the group..I was so scared and > just knew in my heart I was the only one going through this and low and > behold I was sent all these angels in this group to wake me up and pick me > up..I don't know where I'd be without them..Get your son on line but remember > to tell him not to dwell on the fact he has Hep C but to dwell on the fact he > will FIGHT IT... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I have hardly slept since Greg called but I am sure in time that will change and life will get to feeling a bit more normal again. Like about the time he gets a good doctor. > please share anythng we tell you with your son....That's why we were > all put together..I told you there is a reason for everything and yes we have > Hep but we are all here together for one another...Girl sometimes it don't > even matter the time..Some of us can't sleep and are up at all hours..Some of > us (like myself) am a late sleeper but I get back to ya like I have today and > now I think it's time I hushed up...LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 From the metro area of Denver Colorado... and that would be wonderful I am trying to find a support group out here for them then I think MOM has just about butted in enough. If it were up to mom I'd go slay the Dragon for him...but this time .... I cant that hurts ya know it. > I don't remember if you mentioned where you son lives..Maybe someone > here in the group is from there or near it anyway and can be of more help to > him.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Your week didn't even have to end to get better. Way to go !! Kathy (unknown) yee-ha. In spite of my bad week that's happened- well at least it's turnes out good- that I'll have a job for about a week rebecca ===== My turn to learn is an invaluable guide for parents and professionals who share their lives with a child with special needs. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Yes being a mother myself I know how you feel..But at this time it is me doing the slaying myself..I just thank God for having this group to turn to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Never say never just remember even though you don't feel llike eating you still need to do so..I had lost alot of weight but unfortunately I gained it back plus a few moew crept up on me since I've been off this time....LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Hi Terry I lost about 30 pounds while on the treatment. Some of it will probably come back when your finished and your appetite comes back. [ ] (unknown) > Jan I am drinking drinking, I would love to get down > to 155 if I lose another 30 LBS I will be there. > That's what I weighted when I got married 24 years > ago. > That would be a side affect that I would enjoy. > Terry > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Yep Terry it is one of the sides of the TX...Ask your Dr for something to help you with that..Are you on antidepressants?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Thanks, hopefully class will be ok- hopefully I can concertarate. j/k Y'all have a good day. --- UrthWoman <outerspace@...> wrote: > Your week didn't even have to end to get better. > Way to go !! > Kathy > (unknown) > > > > yee-ha. In spite of my bad week that's happened- > well > at least it's turnes out good- that I'll have a > job > for about a week > > rebecca > > ===== > My turn to learn is an invaluable guide for > parents and professionals who share their lives with > a child with special needs. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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