Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Hi Don,thanks so much.I tried to explain to Dad, that I am not planing to treat so there is no 911 rush, but he thinks I am dieing and that is why is is so upset, I tried to explain I will not die, but was too hard to connivence. I tried to explain that my body did not handle the interferon, and until they come up with tx without it I don't think that I can treat. His wife my step Mom just passed away from colon cancer, so I think that maybe this brings the urgency also my Mom is super freaked out. I told him how much money it would cost (I heard $10,000/month), but said he would figure something out.Part of the reason why I have such anxiety and rage, is everybody around me goes crazy, thinking I will die in a few months. Nobody listens to me when I say Hep C will not kill you, but if it does it could take 20 or 30 years. I know somebody on facebook says can't treat had HCV for 40 years.Thanks, not to worry I will always be around`-`Hugs,nyFrom: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Thu, November 11, 2010 8:33:00 PMSubject: [ ] Hi ny Hi ny I want you to know that we all love you, and are praying for your swift healing. When you move, you will have access to some of the best doctors. Please remember to say hi, because we will all be here waiting to hear from you. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Hi ny Be strong my friend. Not everybody understands. Its not their fault - they cannot until they live it. Your Father loves you very much. That is a good thing. Try to keep giving him love and assurance in return. Everything will be ok ny. I promise. love don in ks From: Barrett <barrjohnm@...>Subject: Re: [ ] Hi ny Date: Friday, November 12, 2010, 12:43 AM Hi Don, thanks so much. I tried to explain to Dad, that I am not planing to treat so there is no 911 rush, but he thinks I am dieing and that is why is is so upset, I tried to explain I will not die, but was too hard to connivence. I tried to explain that my body did not handle the interferon, and until they come up with tx without it I don't think that I can treat. His wife my step Mom just passed away from colon cancer, so I think that maybe this brings the urgency also my Mom is super freaked out. I told him how much money it would cost (I heard $10,000/month), but said he would figure something out. Part of the reason why I have such anxiety and rage, is everybody around me goes crazy, thinking I will die in a few months. Nobody listens to me when I say Hep C will not kill you, but if it does it could take 20 or 30 years. I know somebody on facebook says can't treat had HCV for 40 years. Thanks, not to worry I will always be around`-` Hugs, ny From: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Thu, November 11, 2010 8:33:00 PMSubject: [ ] Hi ny Hi ny I want you to know that we all love you, and are praying for your swift healing. When you move, you will have access to some of the best doctors. Please remember to say hi, because we will all be here waiting to hear from you. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hi ny, I have had Hep C for over 44 years and feel pretty good for my 76 years. I didn't treat. If you want articles to send them, I'll look for some and send them to you. I, also, would be willing to talk to them if it would help. I think the hospital stay scared them. I do understand their pain and worry. If you read a recent post by me, I lost a son in a car accident out in the pineapple fields near Honolulu in 1984. Parents simply worry--it is part of being a parent and part of loving someone. Sometimes we even think we know more than our children do (It ain't necessarily so). Just know that their freaking out is because they love you and relax. It WILL work out with a little time. This is a shock--think of all the posts you have read of people freaking out when they are diagnosed. Even Don freaked out back then and he is generally pretty level headed. Enjoy the sunshine and RELAX. Hugs, SuziQ > > Hi Don, > thanks so much. > > I tried to explain to Dad, that I am not planing to treat so there is no 911 > rush, but he thinks I am dieing and that is why is is so upset, I tried to > explain I will not die, but was too hard to connivence. I tried to explain that > my body did not handle the interferon, and until they come up with tx without it > I don't think that I can treat. His wife my step Mom just passed away from colon > cancer, so I think that maybe this brings the urgency also my Mom is super > freaked out. I told him how much money it would cost (I heard $10,000/month), > but said he would figure something out. > > Part of the reason why I have such anxiety and rage, is everybody around me goes > crazy, thinking I will die in a few months. Nobody listens to me when I say Hep > C will not kill you, but if it does it could take 20 or 30 years. I know > somebody on facebook says can't treat had HCV for 40 years. > > Thanks, not to worry I will always be around`-` > Hugs, > ny > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hi Gloria,thanks you!Yeah I know my family loves me a bunch, I am grateful they are so concerned. I ma not sure when I will get another blood test, it would be great if I am negative, then I will not have to treat again.Maybe in time the family will calm down and not freak out. I think that a lack of understanding causes it. I am not sure, but when people have a lack of understanding with surfing conditions, once they understand the fear goes away surfing big waves, maybe life is like this too?Thanks so much,nyFrom: Gloria <gadamscan@...> Sent: Fri, November 12, 2010 6:49:08 AMSubject: Re: [ ] Hi ny nyAt least you have people in your life that do really care. Gee, they probably love you big time!!Hopefully, when you get the viral response taken (today?) maybe it will show that you are negative. Wouldn't it make you feel wonderful if you learn, after all the horrible tx you did manage to get, was a SVR. Then, you'd only have to be checked every few months to see if you remain negative.There are a whole lot of variations when it comes to how long anyone may have had the HepC before it is found. Then, there are a whole lot of variations on whether to treat or not treat. For instance, if for some reason, that last round of tx didn't work for me - I would not be looking or waiting for another new tx. First of all, the older I get, the harder it must be to do these meds.Don may want to think real hard about considering treatment. He already has compromised health and if his liver enzymes etc., stay close to normal - then likely he would die of something else before the liver got him.For me now, it's these damn tumours that I'm going to be battling.Anyway, good luck with the folks. My mom settled down after a long worry period when I first did treatment. Then of course, she flipped when the cancer showed up. However, she's pretty calm now with the new development.Gloria Hi Don,thanks so much.I tried to explain to Dad, that I am not planing to treat so there is no 911 rush, but he thinks I am dieing and that is why is is so upset, I tried to explain I will not die, but was too hard to connivence. I tried to explain that my body did not handle the interferon, and until they come up with tx without it I don't think that I can treat. His wife my step Mom just passed away from colon cancer, so I think that maybe this brings the urgency also my Mom is super freaked out. I told him how much money it would cost (I heard $10,000/month), but said he would figure something out.Part of the reason why I have such anxiety and rage, is everybody around me goes crazy, thinking I will die in a few months. Nobody listens to me when I say Hep C will not kill you, but if it does it could take 20 or 30 years. I know somebody on facebook says can't treat had HCV for 40 years.Thanks, not to worry I will always be around`-`Hugs,nyFrom: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Thu, November 11, 2010 8:33:00 PMSubject: [ ] Hi ny Hi ny I want you to know that we all love you, and are praying for your swift healing. When you move, you will have access to some of the best doctors. Please remember to say hi, because we will all be here waiting to hear from you. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hi SuziQ,Thanks so much for your message!Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying.Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them.If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much,nyFrom: SuziQ <ancientkron@...> Sent: Fri, November 12, 2010 2:53:33 PMSubject: [ ] Re: Hi ny Hi ny, I have had Hep C for over 44 years and feel pretty good for my 76 years. I didn't treat. If you want articles to send them, I'll look for some and send them to you. I, also, would be willing to talk to them if it would help. I think the hospital stay scared them. I do understand their pain and worry. If you read a recent post by me, I lost a son in a car accident out in the pineapple fields near Honolulu in 1984. Parents simply worry--it is part of being a parent and part of loving someone. Sometimes we even think we know more than our children do (It ain't necessarily so). Just know that their freaking out is because they love you and relax. It WILL work out with a little time. This is a shock--think of all the posts you have read of people freaking out when they are diagnosed. Even Don freaked out back then and he is generally pretty level headed. Enjoy the sunshine and RELAX. Hugs, SuziQ > > Hi Don, > thanks so much. > > I tried to explain to Dad, that I am not planing to treat so there is no 911 > rush, but he thinks I am dieing and that is why is is so upset, I tried to > explain I will not die, but was too hard to connivence. I tried to explain that > my body did not handle the interferon, and until they come up with tx without it > I don't think that I can treat. His wife my step Mom just passed away from colon > cancer, so I think that maybe this brings the urgency also my Mom is super > freaked out. I told him how much money it would cost (I heard $10,000/month), > but said he would figure something out. > > Part of the reason why I have such anxiety and rage, is everybody around me goes > crazy, thinking I will die in a few months. Nobody listens to me when I say Hep > C will not kill you, but if it does it could take 20 or 30 years. I know > somebody on facebook says can't treat had HCV for 40 years. > > Thanks, not to worry I will always be around`-` > Hugs, > ny > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 nySomething that just struck me!! Back in the 30's the wife of one of the founders of AA, just naturally started helping the other wives and family of the Alcoholics. Thus, many wives, children, mothers etc. have been helped to understand the behaviours of Alcoholics through Alanon. Eventually, NA was formed to deal with the addicts and where it was possible, so has a support group for the families.Well, here we are dealing with an epidemic in the world's society and each person that learns that they have somehow contracted this virus, touches no less that minimum 10 other people in their lives. As with alcoholics and addicts families, it is a great issue to suddenly realize that there is a family member that has a chronic illness at best and the possibility of a terminal illness at it's worst. I know that Don has already jumped on to your suggestion and I will do my best as well, to find information directly related to our family members. Personally, I have been very blessed that my own mother uses the computer likely as much as I do or even my son (her only grandson). Therefore, she know a very great deal about this illness. Right now, she has two of her five children affected by HepC.The only drawback to the fact that my mother researches, is that she also is extremely aware of my liver cancer and what can happen. So, I don't get the opportunity to hold something back so that she won't worry so much.Gloria Hi SuziQ,Thanks so much for your message!Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying.Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them.If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much,nyFrom: SuziQ <ancientkron@...> Sent: Fri, November 12, 2010 2:53:33 PMSubject: [ ] Re: Hi ny Hi ny, I have had Hep C for over 44 years and feel pretty good for my 76 years. I didn't treat. If you want articles to send them, I'll look for some and send them to you. I, also, would be willing to talk to them if it would help. I think the hospital stay scared them. I do understand their pain and worry. If you read a recent post by me, I lost a son in a car accident out in the pineapple fields near Honolulu in 1984. Parents simply worry--it is part of being a parent and part of loving someone. Sometimes we even think we know more than our children do (It ain't necessarily so). Just know that their freaking out is because they love you and relax. It WILL work out with a little time. This is a shock--think of all the posts you have read of people freaking out when they are diagnosed. Even Don freaked out back then and he is generally pretty level headed. Enjoy the sunshine and RELAX. Hugs, SuziQ > > Hi Don, > thanks so much. > > I tried to explain to Dad, that I am not planing to treat so there is no 911 > rush, but he thinks I am dieing and that is why is is so upset, I tried to > explain I will not die, but was too hard to connivence. I tried to explain that > my body did not handle the interferon, and until they come up with tx without it > I don't think that I can treat. His wife my step Mom just passed away from colon > cancer, so I think that maybe this brings the urgency also my Mom is super > freaked out. I told him how much money it would cost (I heard $10,000/month), > but said he would figure something out. > > Part of the reason why I have such anxiety and rage, is everybody around me goes > crazy, thinking I will die in a few months. Nobody listens to me when I say Hep > C will not kill you, but if it does it could take 20 or 30 years. I know > somebody on facebook says can't treat had HCV for 40 years. > > Thanks, not to worry I will always be around`-` > Hugs, > ny > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 nyPersonally, I believe that you do need to let your body regroup itself and get stronger. I also suspect that whoever was looking after you at that clinic, was not being extra cautious with your negative effects.However, with a whole lot more individual attention from a team and the support of loving family to see to your needs, you may yet be able to treat. However, don't even think of it, until you have had another viral test and you might as well as wait then for the new combo.I do personally know someone that is on the same Interferon for a particular Leukemia and has been very well in excess of 20 yrs. with this and several other chemos. To me it is unbelievable how he has managed to continue. Yet, other than the fatigue, it always appears that he has been able to enjoy a reasonable life.Gloria ny, I am stopping you right here... Your body was handling the Interferon quite well. It was doing it's job and killing the virus. What happened is that you weren't giving your body enough water and therefore the rest of the problems arose. Please do not write this drug off. Under the right circumstances, I am almost positive you could handle treatment again if need be. So everyone knows, if you are having a bad reaction to a drug, or allergic to a drug, your body will respond within a matter of HOURS. Not days, weeks or months. HOURS. The drugs used to treat Hep C are not weak drugs. These are very strong medications. This same combo of Ribavirin and Interferon is used as chemotherapy for some cancers. Maybe that can put it into perspective for you. You don't ever hear someone say what a piece of cake their chemo treatment was do you? Nope. This is the same thing. It's going to be hard but that doesn't mean your body can't take the drugs. Hugs,Teri On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote: Hi SuziQ,Thanks so much for your message! Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying. Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them. If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much, ny 1 New Links 67 Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Hi ny, I can see you are feeling pressured to make decisions, like moving, treatment, no treatment, etc, right now. Maybe the best thing you can do is simply sit still and get well. If you love the island, then relax and enjoy it. You may want to stay there. Don't make plans until YOU are ready. There will be time to decide how you feel about this whole experience down the road when you are feeling better. You've been thru a lot and re-living it in your head has to cause stress. Give yourself time to heal before making decisions. Try your best to live in today and take it one day at a time. Make ANY decisions based on what YOU think is best for YOU--when the time comes to make decisions. Now is the time for a little R & R. My thoughts are with you and I wish you a pleasant comfortable day relaxing and recuperating. Hugs, SuziQ > > > On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote: > > > >Hi SuziQ, > > > > > >Thanks so much for your message! > > > > > >Yes, the hospital and the complications from the treatment scared them, they no > >longer think that I can take care of myself. My father also says I have to deal > >with the fact that if I don't kill the Hep C I will die, he wants me to create a > >will and give him power of attorney to make medical decisions for me when I > >can't. I tried to explain, it is not like that at all I am not diing nor will I > >anytime soon. But it is hard to connivence them, especially when they are > >crying. > > > > > >Moving back there to treat if I decide too, as I did not get the proper care > >here, and having a support team like family to help you makes sense, but I > >don't see the 911 in moving back there in a few days. I am planning to in time > >for a while as I will still need to see doctors for the issues relating to the > >treatment. I did explain to him, my body does not handle the interferon, which > >is why I had to stop so until they come up with a treatment without interferon, > >the same thing might happen to me, and no doctor can fix that. I do hope they > >come out with different options for people who just don't handle the interferon. > >I asked him do do research, and I send him so many links and pdf articles about > >Hep C and the treatment, I don't think that he read them. > > > > > >If you have any links for " parents of Hep C patients " that might help. > > > > > >I am sorry to hear that you lost your son in the car accident. > >thanks so much, > >ny > >. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 thanks Teri,I am sorry. I think that you are right about the water.Hugs,nyFrom: Theresa Gottlieb <theresagottlieb@...> < >Sent: Sat, November 13, 2010 2:21:29 AMSubject: Re: [ ] Re: Hi ny ny, I am stopping you right here... Your body was handling the Interferon quite well. It was doing it's job and killing the virus. What happened is that you weren't giving your body enough water and therefore the rest of the problems arose. Please do not write this drug off. Under the right circumstances, I am almost positive you could handle treatment again if need be. So everyone knows, if you are having a bad reaction to a drug, or allergic to a drug, your body will respond within a matter of HOURS. Not days, weeks or months. HOURS. The drugs used to treat Hep C are not weak drugs. These are very strong medications. This same combo of Ribavirin and Interferon is used as chemotherapy for some cancers. Maybe that can put it into perspective for you. You don't ever hear someone say what a piece of cake their chemo treatment was do you? Nope. This is the same thing. It's going to be hard but that doesn't mean your body can't take the drugs. Hugs,Teri On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote: Hi SuziQ,Thanks so much for your message! Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying. Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them. If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much, ny 1 New Links 67 Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Hi Gloria,thanks so much.yeah I think that they are worried because I am effected by Hep C and they think that the worse will happen. Even if all goes well I still have Hep C, and problems because of the treatment, whatever caused it. This all started to get bad when I had to stop, during treatment they did not insist that I move back, so i think that now they think the worse.Thanks so much for your message,nyFrom: Gloria <gadamscan@...> Sent: Sun, November 14, 2010 2:36:30 PMSubject: Re: [ ] Re: Hi ny nySomething that just struck me!! Back in the 30's the wife of one of the founders of AA, just naturally started helping the other wives and family of the Alcoholics. Thus, many wives, children, mothers etc. have been helped to understand the behaviours of Alcoholics through Alanon. Eventually, NA was formed to deal with the addicts and where it was possible, so has a support group for the families.Well, here we are dealing with an epidemic in the world's society and each person that learns that they have somehow contracted this virus, touches no less that minimum 10 other people in their lives. As with alcoholics and addicts families, it is a great issue to suddenly realize that there is a family member that has a chronic illness at best and the possibility of a terminal illness at it's worst. I know that Don has already jumped on to your suggestion and I will do my best as well, to find information directly related to our family members. Personally, I have been very blessed that my own mother uses the computer likely as much as I do or even my son (her only grandson). Therefore, she know a very great deal about this illness. Right now, she has two of her five children affected by HepC.The only drawback to the fact that my mother researches, is that she also is extremely aware of my liver cancer and what can happen. So, I don't get the opportunity to hold something back so that she won't worry so much.Gloria Hi SuziQ,Thanks so much for your message!Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying.Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them.If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much,nyFrom: SuziQ <ancientkron@...> Sent: Fri, November 12, 2010 2:53:33 PMSubject: [ ] Re: Hi ny Hi ny, I have had Hep C for over 44 years and feel pretty good for my 76 years. I didn't treat. If you want articles to send them, I'll look for some and send them to you. I, also, would be willing to talk to them if it would help. I think the hospital stay scared them. I do understand their pain and worry. If you read a recent post by me, I lost a son in a car accident out in the pineapple fields near Honolulu in 1984. Parents simply worry--it is part of being a parent and part of loving someone. Sometimes we even think we know more than our children do (It ain't necessarily so). Just know that their freaking out is because they love you and relax. It WILL work out with a little time. This is a shock--think of all the posts you have read of people freaking out when they are diagnosed. Even Don freaked out back then and he is generally pretty level headed. Enjoy the sunshine and RELAX. Hugs, SuziQ > > Hi Don, > thanks so much. > > I tried to explain to Dad, that I am not planing to treat so there is no 911 > rush, but he thinks I am dieing and that is why is is so upset, I tried to > explain I will not die, but was too hard to connivence. I tried to explain that > my body did not handle the interferon, and until they come up with tx without it > I don't think that I can treat. His wife my step Mom just passed away from colon > cancer, so I think that maybe this brings the urgency also my Mom is super > freaked out. I told him how much money it would cost (I heard $10,000/month), > but said he would figure something out. > > Part of the reason why I have such anxiety and rage, is everybody around me goes > crazy, thinking I will die in a few months. Nobody listens to me when I say Hep > C will not kill you, but if it does it could take 20 or 30 years. I know > somebody on facebook says can't treat had HCV for 40 years. > > Thanks, not to worry I will always be around`-` > Hugs, > ny > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Hi Gloria,thanks!Yes I agree that I need to rest and recoop, no I don't feel the people at the clinic was looking after me good, as I told them about the side effects always and told them I felt bloated for months, but they never seem to take any notice. I am hoping that the virus is gone and for good so I don't have to treat again as to tell you the truth I would be scared to treat again after what I went though, maybe when some of these new drugs come out, and I have a team that actually looks after you, then maybe.I knew somebody with aids in San Francisco, he seemed fine most of the time, just got tired alot he said, but he told me that the treatment was tough. For the most part I thought he was amazing to deal with it so well, he seemed happy when I did see him.thanks,Hugs,nyFrom: Gloria <gadamscan@...> Sent: Sun, November 14, 2010 2:59:22 PMSubject: Re: [ ] Re: Hi ny nyPersonally, I believe that you do need to let your body regroup itself and get stronger. I also suspect that whoever was looking after you at that clinic, was not being extra cautious with your negative effects.However, with a whole lot more individual attention from a team and the support of loving family to see to your needs, you may yet be able to treat. However, don't even think of it, until you have had another viral test and you might as well as wait then for the new combo.I do personally know someone that is on the same Interferon for a particular Leukemia and has been very well in excess of 20 yrs. with this and several other chemos. To me it is unbelievable how he has managed to continue. Yet, other than the fatigue, it always appears that he has been able to enjoy a reasonable life.Gloria ny, I am stopping you right here... Your body was handling the Interferon quite well. It was doing it's job and killing the virus. What happened is that you weren't giving your body enough water and therefore the rest of the problems arose. Please do not write this drug off. Under the right circumstances, I am almost positive you could handle treatment again if need be. So everyone knows, if you are having a bad reaction to a drug, or allergic to a drug, your body will respond within a matter of HOURS. Not days, weeks or months. HOURS. The drugs used to treat Hep C are not weak drugs. These are very strong medications. This same combo of Ribavirin and Interferon is used as chemotherapy for some cancers. Maybe that can put it into perspective for you. You don't ever hear someone say what a piece of cake their chemo treatment was do you? Nope. This is the same thing. It's going to be hard but that doesn't mean your body can't take the drugs. Hugs,Teri On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote: Hi SuziQ,Thanks so much for your message! Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying. Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them. If you have any links for "parents of Hep C patients" that might help.I am sorry to hear that you lost your son in the car accident.thanks so much, ny 1 New Links 67 Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Hi SuziQ,thanks!Yes this has always been my life story being pressured and giving in to make others happy. If you ask me, I want to move back to the North Shore by pipeline I love it there. Yes I will need to think "What is best for me for once". I am thinking about going to a visit for the holidays to ease their fears.My good friend Lai told me something too today, live for right now, because that is all we have, it made me think it is true yesterday & tomorrow does not matter just right now. I wish I could just shut off my brain sometimes, it is loud with all these voices. I did too start just thinking about right now.thanks so much for your message,Hugs,nyFrom: SuziQ <ancientkron@...> Sent: Sun, November 14, 2010 6:20:57 PMSubject: [ ] Re: Hi ny Hi ny, I can see you are feeling pressured to make decisions, like moving, treatment, no treatment, etc, right now. Maybe the best thing you can do is simply sit still and get well. If you love the island, then relax and enjoy it. You may want to stay there. Don't make plans until YOU are ready. There will be time to decide how you feel about this whole experience down the road when you are feeling better. You've been thru a lot and re-living it in your head has to cause stress. Give yourself time to heal before making decisions. Try your best to live in today and take it one day at a time. Make ANY decisions based on what YOU think is best for YOU--when the time comes to make decisions. Now is the time for a little R & R. My thoughts are with you and I wish you a pleasant comfortable day relaxing and recuperating. Hugs, SuziQ > > > On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote: > > > >Hi SuziQ, > > > > > >Thanks so much for your message! > > > > > >Yes, the hospital and the complications from the treatment scared them, they no > >longer think that I can take care of myself. My father also says I have to deal > >with the fact that if I don't kill the Hep C I will die, he wants me to create a > >will and give him power of attorney to make medical decisions for me when I > >can't. I tried to explain, it is not like that at all I am not diing nor will I > >anytime soon. But it is hard to connivence them, especially when they are > >crying. > > > > > >Moving back there to treat if I decide too, as I did not get the proper care > >here, and having a support team like family to help you makes sense, but I > >don't see the 911 in moving back there in a few days. I am planning to in time > >for a while as I will still need to see doctors for the issues relating to the > >treatment. I did explain to him, my body does not handle the interferon, which > >is why I had to stop so until they come up with a treatment without interferon, > >the same thing might happen to me, and no doctor can fix that. I do hope they > >come out with different options for people who just don't handle the interferon. > >I asked him do do research, and I send him so many links and pdf articles about > >Hep C and the treatment, I don't think that he read them. > > > > > >If you have any links for "parents of Hep C patients" that might help. > > > > > >I am sorry to hear that you lost your son in the car accident. > >thanks so much, > >ny > >. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 ny,No apology needed... I just want you to understand what happened...  You CAN handle the Interferon and Ribavirin.. you were doing it and your body was responding positively to it as well.  I HONESTLY think, if you let your body heal and then get connected with a GOOD Liver Specialist, you can get thru this treatment and clear.  Especially with the new drugs that are on target to come out next year.  Your body will need plenty of time to heal from this round and as time goes by your mindset toward treatment will change..  I know it did for me and Steve and a lot of other people.  We all said NEVER AGAIN while we were doing it and right after... Now we are all pretty much willing to jump in again if the need ever arises.  Time tends to heal all wounds.  And yep.. pretty sure it was the water.. or lack thereof.  Just give it time.. sounds like you have some good docs now..  they will get you fixed up. Hugs,Teri On Tue, Nov 16, 2010 at 5:38 AM, Barrett <barrjohnm@...> wrote:  thanks Teri,I am sorry. I think that you are right about the water. Hugs,ny From: Theresa Gottlieb <theresagottlieb@...> < > Sent: Sat, November 13, 2010 2:21:29 AMSubject: Re: [ ] Re: Hi ny  ny, I am stopping you right here...  Your body was handling the Interferon quite well.  It was doing it's job and killing the virus.  What happened is that you weren't giving your body enough water and therefore the rest of the problems arose.  Please do not write this drug off.  Under the right circumstances, I am almost positive you could handle treatment again if need be.  So everyone knows, if you are having a bad reaction to a drug, or allergic to a drug, your body will respond within a matter of HOURS.  Not days, weeks or months.  HOURS.  The drugs used to treat Hep C are not weak drugs.  These are very strong medications.  This same combo of Ribavirin and Interferon is used as chemotherapy for some cancers.  Maybe that can put it into perspective for you.  You don't ever hear someone say what a piece of cake their chemo treatment was do you?  Nope.  This is the same thing.  It's going to be hard but that doesn't mean your body can't take the drugs.  Hugs,Teri On Sat, Nov 13, 2010 at 3:46 AM, Barrett <barrjohnm@...> wrote:  Hi SuziQ,Thanks so much for your message! Yes, the hospital and the complications from the treatment scared them, they no longer think that I can take care of myself. My father also says I have to deal with the fact that if I don't kill the Hep C I will die, he wants me to create a will and give him power of attorney to make medical decisions for me when I can't. I tried to explain, it is not like that at all I am not diing nor will I anytime soon. But it is hard to connivence them, especially when they are crying. Moving back there to treat if I decide too, as I did not get the proper care here, and having a support team like family to help you makes sense, but I don't see the 911 in moving back there in a few days. I am planning to in time for a while as I will still need to see doctors for the issues relating to the treatment. I did explain to him, my body does not handle the interferon, which is why I had to stop so until they come up with a treatment without interferon, the same thing might happen to me, and no doctor can fix that. I do hope they come out with different options for people who just don't handle the interferon. I asked him do do research, and I send him so many links and pdf articles about Hep C and the treatment, I don't think that he read them. If you have any links for " parents of Hep C patients " that might help.I am sorry to hear that you lost your son in the car accident.thanks so much, ny 1 New Links 67 Visit Your Group Quote Link to comment Share on other sites More sharing options...
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