Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Gloria,What Cheryl is up against is pretty normal here when you are dealing with an HMO such as Kaiser. Kaiser in particular is pretty awful about not letting you see a doctor that is not within their parameters. I have dealt with Kaiser on the back end, from the administration of benefits side and they are horrible. I had to fight them tooth and nail on behalf of our employees who only had them available. They are a HUGE HMO and they have very strict guidelines. I, myself, hear Kaiser and I run the other direction. Hugs,Teri From: Gloria <gadamscan@...> Sent: Sat, September 25, 2010 6:24:40 PMSubject: [ ] - Gloria CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Cheryl,I have lots of experience with Kaiser.. I hate them. I was a Benefits Administrator for a very large Insurance Company when I was diagnosed with Hep C. I did the insurance work for our own employees. Went to bat with them with the medical insurance companies.. Kaiser is by far the strictest of all of them and usually from what I saw, their care was substandard. If, when your husbands insurance comes up for renewal and you have open enrollment (it's usually around the fall every year) if you have a choice to opt out of Kaiser and get into a Blue Cross or anything but Kaiser, do it. What Kaiser is doing to you is perfectly legal and they do that within their system all the time. You have no choice of doctors, you get who they hire on when it comes to specialists. I know, it sucks... That's one of the reasons I run like hell when I hear about Kaiser Insurance Plans. Hugs,Teri From: "Honey1962@..." <Honey1962@...> Sent: Sat, September 25, 2010 6:41:01 PMSubject: Re: [ ] - Gloria Gloria, No I am not doing a clinical trial, Kaiser is my insurance through my husbands work. Last year when I was diagnosed, they didn't have a gastro doctor with kaiser to refer me to. So my primary care doctor, referred me to a gastro close to my home. I have been seeing him since last August. Then when it came time for my 4 week check on the tx, my referral was denied. They said that Kaiser has a gastro now and I cannot see the gastro I have been seeing for a year. I was so upset, I was so looking forward to seeing what my 4 week check would say. So I called my primary care doctor and told her she better get a referral for me to see him at week for or I was going to blow a gasket on her...lol Gotta love the Riba rage sometimes...lol So she was able to get me one more referral to see him which he had wonderful news for me. But now I have been calling them and she still hasn't gotten me in to see the new doctor yet. I am supposed to be seen again on week 8 or 9 of my tx and that would be the first or second week in Oct. That's where I stand right now, my sister said I should appeal it but honestly I don't have the strength some days to go through it. I just want to see my doctor when I am supposed to. Is that so much to ask??? I don't know what to do right now. But that's where I stand right now. If anyone has any experience with this, your input would be greatly appreciated. Huggssss Cheryl In a message dated 9/25/2010 7:24:52 P.M. Eastern Daylight Time, gadamscan@... writes: CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Cheryl,I have lots of experience with Kaiser.. I hate them. I was a Benefits Administrator for a very large Insurance Company when I was diagnosed with Hep C. I did the insurance work for our own employees. Went to bat with them with the medical insurance companies.. Kaiser is by far the strictest of all of them and usually from what I saw, their care was substandard. If, when your husbands insurance comes up for renewal and you have open enrollment (it's usually around the fall every year) if you have a choice to opt out of Kaiser and get into a Blue Cross or anything but Kaiser, do it. What Kaiser is doing to you is perfectly legal and they do that within their system all the time. You have no choice of doctors, you get who they hire on when it comes to specialists. I know, it sucks... That's one of the reasons I run like hell when I hear about Kaiser Insurance Plans. Hugs,Teri From: "Honey1962@..." <Honey1962@...> Sent: Sat, September 25, 2010 6:41:01 PMSubject: Re: [ ] - Gloria Gloria, No I am not doing a clinical trial, Kaiser is my insurance through my husbands work. Last year when I was diagnosed, they didn't have a gastro doctor with kaiser to refer me to. So my primary care doctor, referred me to a gastro close to my home. I have been seeing him since last August. Then when it came time for my 4 week check on the tx, my referral was denied. They said that Kaiser has a gastro now and I cannot see the gastro I have been seeing for a year. I was so upset, I was so looking forward to seeing what my 4 week check would say. So I called my primary care doctor and told her she better get a referral for me to see him at week for or I was going to blow a gasket on her...lol Gotta love the Riba rage sometimes...lol So she was able to get me one more referral to see him which he had wonderful news for me. But now I have been calling them and she still hasn't gotten me in to see the new doctor yet. I am supposed to be seen again on week 8 or 9 of my tx and that would be the first or second week in Oct. That's where I stand right now, my sister said I should appeal it but honestly I don't have the strength some days to go through it. I just want to see my doctor when I am supposed to. Is that so much to ask??? I don't know what to do right now. But that's where I stand right now. If anyone has any experience with this, your input would be greatly appreciated. Huggssss Cheryl In a message dated 9/25/2010 7:24:52 P.M. Eastern Daylight Time, gadamscan@... writes: CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Oh CherylOf course you do not have the energy to fight such a stupid system. Geez, I know that one of the most important things, going into tx, is to have a secure feeling about the Gastro!!Even on a clinical trial, I did not see my actual Gastro every time I was over to the city. Instead, I was seen by a clinician. However, every scrap of paper on my trial was overseen by the Gastro. But, as you know, I'd been through tx before and knew some of the drill. However, being on a trial, I was not allowed to know my viral count at any particular time until about the 36th week. What I was aware of though, was that I would not be allowed to continue on the clinical, if my vl wasn't what should be expected. That's why I was allowed to know, after week 36!! After all, I knew it must be working.Also, I was told at that point about my negative RNA, probably so I would understand better, why they wanted me to complete, even though they were pretty sure that I had the cancer.Gloria Gloria, No I am not doing a clinical trial, Kaiser is my insurance through my husbands work. Last year when I was diagnosed, they didn't have a gastro doctor with kaiser to refer me to. So my primary care doctor, referred me to a gastro close to my home. I have been seeing him since last August. Then when it came time for my 4 week check on the tx, my referral was denied. They said that Kaiser has a gastro now and I cannot see the gastro I have been seeing for a year. I was so upset, I was so looking forward to seeing what my 4 week check would say. So I called my primary care doctor and told her she better get a referral for me to see him at week for or I was going to blow a gasket on her...lol Gotta love the Riba rage sometimes...lol So she was able to get me one more referral to see him which he had wonderful news for me. But now I have been calling them and she still hasn't gotten me in to see the new doctor yet. I am supposed to be seen again on week 8 or 9 of my tx and that would be the first or second week in Oct. That's where I stand right now, my sister said I should appeal it but honestly I don't have the strength some days to go through it. I just want to see my doctor when I am supposed to. Is that so much to ask??? I don't know what to do right now. But that's where I stand right now. If anyone has any experience with this, your input would be greatly appreciated. Huggssss Cheryl In a message dated 9/25/2010 7:24:52 P.M. Eastern Daylight Time, gadamscan@... writes: CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 LOLWell, as I've said before, our medical and prescription drugs are overseen by the provincial governments. In order to fill their parameters, the HepC patient has to have 3 bad readings of their liver enzymes. Then, you move onto the next step which is, the biopsy. Even as bad as the results of that biopsy were, my Dr did comment on the fact that it might have been a little sticky for me to be accepted, except of course, the biopsy said it all.A lot of folks think that's crazy here and that they should be able to start treatment, literally as soon as they are diagnosed. Truthfully, I don't have an answer on that one, except that as we all say here - the sooner one learns about their infection, the greater is the chance to clear it.Gloria Gloria,What Cheryl is up against is pretty normal here when you are dealing with an HMO such as Kaiser. Kaiser in particular is pretty awful about not letting you see a doctor that is not within their parameters. I have dealt with Kaiser on the back end, from the administration of benefits side and they are horrible. I had to fight them tooth and nail on behalf of our employees who only had them available. They are a HUGE HMO and they have very strict guidelines. I, myself, hear Kaiser and I run the other direction. Hugs,Teri From: Gloria <gadamscan@...> Sent: Sat, September 25, 2010 6:24:40 PMSubject: [ ] - Gloria CherylThat is actually mind-blowing to me!! Were you doing a clinical trial with Kaiser? Or, what do they have to do with which Gastro you see? I've never heard anything like this before!!You vent on me anytime you like!!! But, I'm not going to bore you with my continual woes. I'm looking all over this little trailer for my big girls panties again and then I'd be ready to tackle all that is going on around me.Let me know about this crap though.Luv Gloria Hi Gloria, I am doing well, I had a set back last week when I slacked off on the water and couldn't lift my head for 3 days. Then on the 4th day, I got a stomach thing and that had me down for 2 days. Friday I felt good and wore myself out trying to play catch up. So this week I drank myself silly with water and feel decent today after taking my shot last night. Kaiser won't let me see my gastro because they now have one on staff and I can't get in right away and am so pissed. I don't know what to do, I think its unfair that they won't allow me to continue seeing the doctor I have been seeing for a year and right in the beginnings of tx I have to switch. I am supposed to be seen and do blood work the 1st or 2nd week of October that will be week 8 & 9 for me and I still can't get in? I don't know what to do, I guess just be thankful I have insurance and that my sides are minimal, but I just want to know my blood work is good. Is that so much to ask?? LOL that's a lot, sorry to vent on you!! Thanks so much for checking in on me!! How is everything going for you lately? Hope you are having a fabulous weekend... Cheryl xoxoxoxo In a message dated 9/25/2010 1:04:46 A.M. Eastern Daylight Time, gadamscan@... writes: CherylHow are you doing?? Still getting through pretty easily? I will tell you why Don, because you are a good person and good things happen to good people. You always cheer me on, I feel bad sending updates about my progress sometimes because they keep telling you not to start yet. But deep down I know you are cheering me on and want to hear how those of us on tx are doing. You are a dear friend to all!!! Love always!! Cheryl In a message dated 9/24/2010 4:21:40 P.M. Eastern Daylight Time, ludichrist2000@... writes: Thank you Cheryl I think somebody likes me or I wouldnt have made it this far. Beats me why tho. LOL :-) love don in ks From: Honey1962@... <Honey1962@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010  I have my doctors email all my lab results so I can print them for my records. Also I emailed with any questions or concerns, it's much easier for them to respond. I know I go crazy waiting and they should understand your anxiety. Pam Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 PamI know that I wish that could me the normal method, especially since anyone on treatment are anxious to know asap what the results are. However, you must have a real 21st century doctor. I sure haven't found a Dr. yet, that would do that.But, where I live is really not a very large community. Therefore, it was easy to just go back to the lab and get my results, while I was on treatment the first time.However, on the 2nd round which was a clinical, I had to go over to the city so often that getting a copy was never a problem. Yet, I would turn around and make sure my local Dr. had some of the information and even would e-mail results to the HepC nurses.Gloria  I have my doctors email all my lab results so I can print them for my records. Also I emailed with any questions or concerns, it's much easier for them to respond. I know I go crazy waiting and they should understand your anxiety. Pam Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 The doctor's office that I am using has the ability to get lab results over the internet, e-mail the doctor directly with questions or concerns and get prescriptions refilled by just requesting them online. It's the coolest thing I've ever used. They should all have this.. it makes life so much easier. I think the cost involved in the start up is enormous so it's going to be the bigger hospital systems that use it first. Hugs,TeriFrom: Gloria <gadamscan@...> Sent: Sat, September 25, 2010 9:54:45 PMSubject: Re: [ ] - Gloria PamI know that I wish that could me the normal method, especially since anyone on treatment are anxious to know asap what the results are. However, you must have a real 21st century doctor. I sure haven't found a Dr. yet, that would do that.But, where I live is really not a very large community. Therefore, it was easy to just go back to the lab and get my results, while I was on treatment the first time.However, on the 2nd round which was a clinical, I had to go over to the city so often that getting a copy was never a problem. Yet, I would turn around and make sure my local Dr. had some of the information and even would e-mail results to the HepC nurses.Gloria  I have my doctors email all my lab results so I can print them for my records. Also I emailed with any questions or concerns, it's much easier for them to respond. I know I go crazy waiting and they should understand your anxiety. Pam Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.