Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 I am a 5 time non responder and after the 5th try the doctors know I can never treat again . I follow up with a hepatologist , and get ultrasounds every 6 months . Every 3 now that my tumor markers are elevated . But before that they were doing monthly meld scores to determine when to transplant but I opted out of the tp program . Now I see the doc only when I have a problem that my general practioner can't handle . Which type of doctor should be a gi or a hepatologist , and what care you get will be tailor made to your situation . Subject: Follow up care?To: Hepatitis_C_Central Date: Friday, December 10, 2010, 9:37 AM I am interested in those who did not reach SVR what you do for follow up care? What type of doctor monitors you? I am not so sure the Infectious Disease doctor is my best choice at this point. I do not plan on ever doing the treatment again. It was way to hard on me. I understand the consequences of that decision. I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good doctor in this area that I should go to for follow up care? I appreciate any advice. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Deborah, if you can get to Dr. Berkson in Las Cruces New Mexico, he'd be the one I'd see for follow up if you wont do treatment again,, just my 2 cents, hugs, jax Subject: Follow up care?To: Hepatitis_C_Central Date: Friday, December 10, 2010, 9:37 AM I am interested in those who did not reach SVR what you do for follow up care? What type of doctor monitors you? I am not so sure the Infectious Disease doctor is my best choice at this point. I do not plan on ever doing the treatment again. It was way to hard on me. I understand the consequences of that decision. I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good doctor in this area that I should go to for follow up care? I appreciate any advice. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Hi Deborah, I live down in Whitney, near Hillsboro Tx. I have not treated and do not plan to treat--my age and situation being major considerations. I'm 76and live alone.I have not found any doctors who do homeopathic treatments other than a doctor in Tyler who might help. Have not been to see him. I have been to see Dr Berkson in Las Cruses NM. I follow his protocol. My recent labs are mostly normal and my viral load is just over 1 million (considered low). I've had Hep C over 40 years. Hep C does not seem to affect my life or cause me pain. I was recently diagnosed with type 2 diabetes, but I believe that is primarily my own fault for not watching my diet. I know better!! Dr Berkson does NOT treat Hep C. He treats the liver and auto-immune diseases. His treatment is aimed at keeping the liver healthy and helping it heal in spite of having Hep C. If you are interested in Dr Berkson, I can send you direct a number of articles on him, his credentials, etc. You,also, can simply follow his protocol (which I can send you)without going to see him. His treatment has been successful for many people. They are continuing to live productive lives even tho they have Hep C. His supplements are over the counter and run about $50 to $100 a month. Let me know if you are interested and I'll get info to you. SuziQ > > I am interested in those who did not reach SVR what you do for follow up > care? What type of doctor monitors you? I am not so sure the Infectious > Disease doctor is my best choice at this point. I do not plan on ever > doing the treatment again. It was way to hard on me. I understand the > consequences of that decision. > > I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good > doctor in this area that I should go to for follow up care? > > I appreciate any advice. > > Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 Dear Suzi, I didn't know you lived in Texas!! We got a bunch of Texans in here. One of these days I am going to have to host a Texas branch of Hepatitis_C_Central BBQ at my house for all the members that live here. It is worth the drive because my son makes the best brisket and homemade sausage you have ever laid your lips around.Last night we had Chicken Polano Sausage that he made and stuffed himself. Aww delish. All you Texans speak up. We could do this in the Spring. Or maybe I can find a place that would be closer to everyone and we could have a great time. Maybe a camp out. What do you say??? Love Janet "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Saturday, December 11, 2010, 7:55 AM Hi Deborah,I live down in Whitney, near Hillsboro Tx. I have not treated and do not plan to treat--my age and situation being major considerations. I'm 76and live alone.I have not found any doctors who do homeopathic treatments other than a doctor in Tyler who might help. Have not been to see him. I have been to see Dr Berkson in Las Cruses NM. I follow his protocol. My recent labs are mostly normal and my viral load is just over 1 million (considered low). I've had Hep C over 40 years. Hep C does not seem to affect my life or cause me pain. I was recently diagnosed with type 2 diabetes, but I believe that is primarily my own fault for not watching my diet. I know better!! Dr Berkson does NOT treat Hep C. He treats the liver and auto-immune diseases. His treatment is aimed at keeping the liver healthy and helping it heal in spite of having Hep C. If you are interested in Dr Berkson, I can send you direct a number of articles on him, his credentials, etc. You,also, can simply follow his protocol (which I can send you)without going to see him. His treatment has been successful for many people. They are continuing to live productive lives even tho they have Hep C. His supplements are over the counter and run about $50 to $100 a month. Let me know if you are interested and I'll get info to you.SuziQ >> I am interested in those who did not reach SVR what you do for follow up> care? What type of doctor monitors you? I am not so sure the Infectious> Disease doctor is my best choice at this point. I do not plan on ever> doing the treatment again. It was way to hard on me. I understand the> consequences of that decision.> > I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good> doctor in this area that I should go to for follow up care?> > I appreciate any advice.> > Deborah> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 I will go to the BBQ. I am hungry already. I live in Fort Worth!  Where do you live Janet?   Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 I live in Somerset, Texas, just right outside of San . I like this little town, close enough to go to San to go shopping, but when I leave all the hussle and bussle in SA, I go home to quiet little Somerset. We are about 15 mins from Lackland AFB, where my husband works. I used to work on Lackland but now I am in college and my college is right near his work. I would love to have Our Texas Branch of Hepatitis_C_Central to get together. Love Janet "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber Subject: Re: Re: Follow up care?To: Hepatitis_C_Central Date: Sunday, December 12, 2010, 11:29 AM I will go to the BBQ. I am hungry already. I live in Fort Worth! Where do you live Janet? Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 I live in Austin. The only thing is I don't have a car. I could take Greyhound to San or get a rental car. Dear Suzi, I didn't know you lived in Texas!! We got a bunch of Texans in here. One of these days I am going to have to host a Texas branch of Hepatitis_C_Central BBQ at my house for all the members that live here. It is worth the drive because my son makes the best brisket and homemade sausage you have ever laid your lips around.Last night we had Chicken Polano Sausage that he made and stuffed himself. Aww delish. All you Texans speak up. We could do this in the Spring. Or maybe I can find a place that would be closer to everyone and we could have a great time. Maybe a camp out. What do you say??? Love Janet "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber   Subject: Re: Follow up care? To: Hepatitis_C_Central Date: Saturday, December 11, 2010, 7:55 AM  Hi Deborah, I live down in Whitney, near Hillsboro Tx. I have not treated and do not plan to treat--my age and situation being major considerations. I'm 76and live alone.I have not found any doctors who do homeopathic treatments other than a doctor in Tyler who might help. Have not been to see him. I have been to see Dr Berkson in Las Cruses NM. I follow his protocol. My recent labs are mostly normal and my viral load is just over 1 million (considered low). I've had Hep C over 40 years. Hep C does not seem to affect my life or cause me pain. I was recently diagnosed with type 2 diabetes, but I believe that is primarily my own fault for not watching my diet. I know better!! Dr Berkson does NOT treat Hep C. He treats the liver and auto-immune diseases. His treatment is aimed at keeping the liver healthy and helping it heal in spite of having Hep C. If you are interested in Dr Berkson, I can send you direct a number of articles on him, his credentials, etc. You,also, can simply follow his protocol (which I can send you)without going to see him. His treatment has been successful for many people. They are continuing to live productive lives even tho they have Hep C. His supplements are over the counter and run about $50 to $100 a month. Let me know if you are interested and I'll get info to you. SuziQ > > I am interested in those who did not reach SVR what you do for follow up > care? What type of doctor monitors you? I am not so sure the Infectious > Disease doctor is my best choice at this point. I do not plan on ever > doing the treatment again. It was way to hard on me. I understand the > consequences of that decision. > > I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good > doctor in this area that I should go to for follow up care? > > I appreciate any advice. > > Deborah > -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 My sister lives in Lockhart Bill, Maybe we can arrange something. We will wait till the weather gets warmer hon. But would love to have you!! Love. Janet "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Saturday, December 11, 2010, 7:55 AM Hi Deborah,I live down in Whitney, near Hillsboro Tx. I have not treated and do not plan to treat--my age and situation being major considerations. I'm 76and live alone.I have not found any doctors who do homeopathic treatments other than a doctor in Tyler who might help. Have not been to see him. I have been to see Dr Berkson in Las Cruses NM. I follow his protocol. My recent labs are mostly normal and my viral load is just over 1 million (considered low). I've had Hep C over 40 years. Hep C does not seem to affect my life or cause me pain. I was recently diagnosed with type 2 diabetes, but I believe that is primarily my own fault for not watching my diet. I know better!! Dr Berkson does NOT treat Hep C. He treats the liver and auto-immune diseases. His treatment is aimed at keeping the liver healthy and helping it heal in spite of having Hep C. If you are interested in Dr Berkson, I can send you direct a number of articles on him, his credentials, etc. You,also, can simply follow his protocol (which I can send you)without going to see him. His treatment has been successful for many people. They are continuing to live productive lives even tho they have Hep C. His supplements are over the counter and run about $50 to $100 a month. Let me know if you are interested and I'll get info to you.SuziQ >> I am interested in those who did not reach SVR what you do for follow up> care? What type of doctor monitors you? I am not so sure the Infectious> Disease doctor is my best choice at this point. I do not plan on ever> doing the treatment again. It was way to hard on me. I understand the> consequences of that decision.> > I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good> doctor in this area that I should go to for follow up care?> > I appreciate any advice.> > Deborah> -- Bill Eastmanwww.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 I'm always up for a good BBQ, I live in Onalaska Texas a block from Lake Lvingston, An Hour and half north of Houston and/or 30 minutes east of Huntsville...let me know Butch > > Dear Suzi, > I didn't know you lived in Texas!! > We got a bunch of Texans in here. One of these days I am going to have to host a Texas > branch of Hepatitis_C_Central BBQ at my house for all the members that live here. It is worth the drive because my son makes the best brisket and homemade sausage you have ever laid your lips around.Last night we had Chicken Polano Sausage that he made and stuffed himself. Aww delish. > All you Texans speak up. We could do this in the Spring. Or maybe I can find a place that would be closer to everyone and we could have a great time. Maybe a camp out. What do you say??? > Love > Janet > > > " There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go " > Frederick Faber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Hey, Butch, Long time no hear um! Guess you're doing o.k. if your ready for a big old Texas style BBQ! And, that's great news. I'm doing better and better, too, so it looks like we're both going to be here fighting for a bunch of years more. Good the hear from you. Rick > > > > Dear Suzi, > > I didn't know you lived in Texas!! > > We got a bunch of Texans in here. One of these days I am going to have to host a Texas > > branch of Hepatitis_C_Central BBQ at my house for all the members that live here. It is worth the drive because my son makes the best brisket and homemade sausage you have ever laid your lips around.Last night we had Chicken Polano Sausage that he made and stuffed himself. Aww delish. > > All you Texans speak up. We could do this in the Spring. Or maybe I can find a place that would be closer to everyone and we could have a great time. Maybe a camp out. What do you say??? > > Love > > Janet > > > > > > " There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go " > > Frederick Faber > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Sounds like a plan to me. Now we have to wait for some warmer weather so my son doesn't freeze his cojones off. LOL But I will make a announcement here in the group and please RSVP so that I can know how much Brisket to buy. Love Janet "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go" Frederick Faber Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Monday, December 13, 2010, 8:38 AM I'm always up for a good BBQ, I live in Onalaska Texas a block from Lake Lvingston, An Hour and half north of Houston and/or 30 minutes east of Huntsville...let me knowButch>> Dear Suzi,> I didn't know you lived in Texas!!> We got a bunch of Texans in here. One of these days I am going to have to host a Texas> branch of Hepatitis_C_Central BBQ at my house for all the members that live here. It is worth the drive because my son makes the best brisket and homemade sausage you have ever laid your lips around.Last night we had Chicken Polano Sausage that he made and stuffed himself. Aww delish. > All you Texans speak up. We could do this in the Spring. Or maybe I can find a place that would be closer to everyone and we could have a great time. Maybe a camp out. What do you say???> Love> Janet> > > "There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"> Frederick Faber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 Hey Rick and all Like the song says " what a long strange trip it's been " . After a decade I finally got SSI and Medicaid then could not find a doctor too treat me. Turns out that having HepC and needing help with pain automatically makes you a no good lousy drug addict that needs a good talking to. Had 3 doctors refuse to treat me and one even kicked me out of his clinic,He walked me to the door while letting me know how he feels about us welfare bums that are just using the system...guess he don't mind cashing the checks he gets from treating us welfare bums. Then the other day completely out of the blue a miracle of biblical proportions happens. A clinic called me back so I could pick up my medical records and I told the girl I had to walk out because of how the doctor treated me. She said they had another real good doctor if I wanted to give him a try. WOW I am still in shock at how good this doctor is, He sat down and listened...realy listened and got excited about how he can help me,He is already sending me to 3 different specialists that he says are the best in there field and he only wants the best for me. He was adamant about getting my pain treated and knowing I still had over a weeks worth of pain meds left he gave me 90 more. He said he did not want me to suffer during the transition of going to new doctors and if I had any left just save em for a rainy day. What kind of doctor thinks like that anymore, He was not concerned about ethics,rules and profit. His only concern was me and what he could do for me. A full blown miracle I tell ya' A real live miracle. For the first time in many years I can start living, I have even caught myself being happy " for real " . Just one doctors visit dumped an 18 wheeler's worth of stress, I feel lighter and my thinking is so much clearer. I am living proof that good doctors are out there, Tough too find one but they are there and my Christmas to each and everyone of you is that you find one too. Maybe if we all start demanding this level of respect things may change. Doctors work for us, we don't work for them and it's about damn time they knew this. I am very glad too hear you are doing better Rick, Being here a bunch more years sounds good to me too...just gotta keep on fighting " you can do it " Wish everyone a fantastic Christmas and a compassionate doctor New Year Butch > > Hey, Butch, Long time no hear um! Guess you're doing o.k. if your ready for a big old Texas style BBQ! And, that's great news. I'm doing better and better, too, so it looks like we're both going to be here fighting for a bunch of years more. Good the hear from you. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 Wow! What a Merry Christmas indeed, Butch! I'm so happy for you. I've been much luckier than you. I've been on Xanax for 20 years and also on Oxycodone for the past 3 or so, with no problems at all. Now, I'm getting them through the VA for free! I had been on different anti-depressants off and on for many years, mainly during my 3 HCV treatments, but I stopped 6 months ago, and am doing ok. Without the pain meds and Xanax, I'd be a complete mess. And my wife will vouch for that! She can tell whenever I haven't taken my meds from my mood and behavior. One big kick in the arse, and I'm on my meds again! Great to hear that you're doing so well and that you finally received your Xmas present in the form of a Doctor. Re: Follow up care? Hey Rick and all Like the song says "what a long strange trip it's been". After a decade I finally got SSI and Medicaid then could not find a doctor too treat me. Turns out that having HepC and needing help with pain automatically makes you a no good lousy drug addict that needs a good talking to. Had 3 doctors refuse to treat me and one even kicked me out of his clinic,He walked me to the door while letting me know how he feels about us welfare bums that are just using the system...guess he don't mind cashing the checks he gets from treating us welfare bums. Then the other day completely out of the blue a miracle of biblical proportions happens. A clinic called me back so I could pick up my medical records and I told the girl I had to walk out because of how the doctor treated me. She said they had another real good doctor if I wanted to give him a try. WOW I am still in shock at how good this doctor is, He sat down and listened...realy listened and got excited about how he can help me,He is already sending me to 3 different specialists that he says are the best in there field and he only wants the best for me. He was adamant about getting my pain treated and knowing I still had over a weeks worth of pain meds left he gave me 90 more. He said he did not want me to suffer during the transition of going to new doctors and if I had any left just save em for a rainy day. What kind of doctor thinks like that anymore, He was not concerned about ethics,rules and profit. His only concern was me and what he could do for me. A full blown miracle I tell ya' A real live miracle. For the first time in many years I can start living, I have even caught myself being happy "for real". Just one doctors visit dumped an 18 wheeler's worth of stress, I feel lighter and my thinking is so much clearer. I am living proof that good doctors are out there, Tough too find one but they are there and my Christmas to each and everyone of you is that you find one too. Maybe if we all start demanding this level of respect things may change. Doctors work for us, we don't work for them and it's about damn time they knew this. I am very glad too hear you are doing better Rick, Being here a bunch more years sounds good to me too...just gotta keep on fighting "you can do it" Wish everyone a fantastic Christmas and a compassionate doctor New Year Butch > > Hey, Butch, Long time no hear um! Guess you're doing o.k. if your ready for a big old Texas style BBQ! And, that's great news. I'm doing better and better, too, so it looks like we're both going to be here fighting for a bunch of years more. Good the hear from you. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 Butch, you probably don't know who I am, but reading the happiness and lightness of heart in your message is wonderful. NOW to beat the dragon and get on with life. The very best to you, including a Merry Christmas and Happy New Year!!!! Sharon in NW WA, another hepper in SVR. Re: Follow up care? Hey Rick and allLike the song says "what a long strange trip it's been". After a decade I finally got SSI and Medicaid then could not find a doctor too treat me. Turns out that having HepC and needing help with pain automatically makes you a no good lousy drug addict that needs a good talking to. Had 3 doctors refuse to treat me and one even kicked me out of his clinic,He walked me to the door while letting me know how he feels about us welfare bums that are just using the system...guess he don't mind cashing the checks he gets from treating us welfare bums. Then the other day completely out of the blue a miracle of biblical proportions happens. A clinic called me back so I could pick up my medical records and I told the girl I had to walk out because of how the doctor treated me. She said they had another real good doctor if I wanted to give him a try. WOW I am still in shock at how good this doctor is, He sat down and listened...realy listened and got excited about how he can help me,He is already sending me to 3 different specialists that he says are the best in there field and he only wants the best for me. He was adamant about getting my pain treated and knowing I still had over a weeks worth of pain meds left he gave me 90 more. He said he did not want me to suffer during the transition of going to new doctors and if I had any left just save em for a rainy day. What kind of doctor thinks like that anymore, He was not concerned about ethics,rules and profit. His only concern was me and what he could do for me. A full blown miracle I tell ya' A real live miracle. For the first time in many years I can start living, I have even caught myself being happy "for real". Just one doctors visit dumped an 18 wheeler's worth of stress, I feel lighter and my thinking is so much clearer. I am living proof that good doctors are out there, Tough too find one but they are there and my Christmas to each and everyone of you is that you find one too. Maybe if we all start demanding this level of respect things may change. Doctors work for us, we don't work for them and it's about damn time they knew this. I am very glad too hear you are doing better Rick, Being here a bunch more years sounds good to me too...just gotta keep on fighting "you can do it" Wish everyone a fantastic Christmas and a compassionate doctor New YearButch>> Hey, Butch, Long time no hear um! Guess you're doing o.k. if your ready for a big old Texas style BBQ! And, that's great news. I'm doing better and better, too, so it looks like we're both going to be here fighting for a bunch of years more. Good the hear from you. Rick------------------------------------It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2010 Report Share Posted December 17, 2010 I did not clear the virus after a year of shots. I am also not a candidate to do it again so they are monitoring me for a transplant. why did you opt out? I am going for it. I have contacted 5 hospitals. There are 2 with meld score requirments of 13 and 15. That would be so great. In California its almost impossible to get a liver and you have to be a 20 to even get on the list. I feel good. I dont drink or even take advil. I have put on 50 lbs since I stopped treatment last October. Some fluid some depression eating. They are trying to get it off me. Your BMI plays a part and I am overweight. I hope everyone has a nice holiday. I do try to stay positive. My boyfriend says that at times I can get "dark" and he is right. It can be a challange just not knowing. I do love reading about where you all are. Sometimes I dont write because I am just plain overwhelmed. I have a 13 year old, a company I run and at least 2-3 doctor appts a week. Thank god I have great doctors. Anyway..........you all hang in there. xx from CA Subject: Follow up care?To: Hepatitis_C_Central Date: Friday, December 10, 2010, 9:37 AM I am interested in those who did not reach SVR what you do for follow up care? What type of doctor monitors you? I am not so sure the Infectious Disease doctor is my best choice at this point. I do not plan on ever doing the treatment again. It was way to hard on me. I understand the consequences of that decision. I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good doctor in this area that I should go to for follow up care? I appreciate any advice. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2010 Report Share Posted December 17, 2010 Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol Subject: Follow up care?To: Hepatitis_C_Central Date: Friday, December 10, 2010, 9:37 AM I am interested in those who did not reach SVR what you do for follow up care? What type of doctor monitors you? I am not so sure the Infectious Disease doctor is my best choice at this point. I do not plan on ever doing the treatment again. It was way to hard on me. I understand the consequences of that decision. I live in the DFW area of Texas, closer to Fort Worth, TX. Is there a good doctor in this area that I should go to for follow up care? I appreciate any advice. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2010 Report Share Posted December 18, 2010 Dear . While I agree and support your personal decisions, I did want to clear one thing up for others in the group. Regarding treatment again after transplant, my Doctors have told me NOT to go through tx again. They know the additional damage treatment would do to an already depleted body. However, they also know that my newish 2+ year old liver is doing quite well, and since I am no longer abusing it with drugs and alcohol, that I will probably live many years more without treatment. Hell, it took 30 or 40 years to need the first transplant, and that was with major abuse of a 60's jerk! So, though I still and always will have HCV, my MELD and all other liver functions are in range. I know that Penney went through tx after tp, but not all of us have to do this. I only bring this up so as not to scare folks away from transplant, fearing future tx's. Each of our situations is different, and we each have to make our own informed decisions, which you and I have done. You are taking care of the problems that pose the greatest risk to you at this time, and that is because you are wise beyond your time, young lady! Keep up your battles, and we pray for you daily. btw, you sound wonderful! > > > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even > started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2010 Report Share Posted December 18, 2010 Oh thank you so much Rick , I have never heard of someone not tx after tp . That is awesome and does offer hope for allot of peope who's livers where to damaged to treat prior to the tp . And you sound so wonderful , the last thing I remember about you was your post transplant hospitalization . I am so happy you are doing well and it's so nice to hear from you . Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Saturday, December 18, 2010, 8:56 AM Dear . While I agree and support your personal decisions, I did want to clear one thing up for others in the group. Regarding treatment again after transplant, my Doctors have told me NOT to go through tx again. They know the additional damage treatment would do to an already depleted body. However, they also know that my newish 2+ year old liver is doing quite well, and since I am no longer abusing it with drugs and alcohol, that I will probably live many years more without treatment. Hell, it took 30 or 40 years to need the first transplant, and that was with major abuse of a 60's jerk! So, though I still and always will have HCV, my MELD and all other liver functions are in range. I know that Penney went through tx after tp, but not all of us have to do this. I only bring this up so as not to scare folks away from transplant, fearing future tx's. Each of our situations is different, and we each have to make our own informed decisions, which you and I have done. You are taking care of the problems that pose the greatest risk to you at this time, and that is because you are wise beyond your time, young lady! Keep up your battles, and we pray for you daily. btw, you sound wonderful!>> > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even> started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 My doctors also say they do not expect me to have to treat after transplant. That we will work on keeping me and my new liver healthy. > > > > > > > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even > > started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 Hi guys, I really appreciate any feedback on the transplant issue. I am trying to have a really positive attitude. I appreciate for her honesty and for both you and Rick. I was told I "might have to treat again". I dont drink of course or do drugs so maybe I can keep it up with healthy living. I am more concerned with the pills after the fact. Penny are you out there?? I love the hospital you went through. Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Monday, December 20, 2010, 2:38 AM My doctors also say they do not expect me to have to treat after transplant. That we will work on keeping me and my new liver healthy.> >> > > > > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even> > started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 I'm assuming you'll need to take the anti-rejection drugs for the rest of your life, but at least no more of the Hep C treatment drugs. My doctors also say they do not expect me to have to treat after transplant. That we will work on keeping me and my new liver healthy. Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 You are right on the money! The problem is that the anti-rejection drugs (typically "Prograf") is terribly expensive. I had been taking 60mg per day, and even with insurance, it cost around $1150.00 per month, I believe. Plus, I was also on Valcite, which was another very expensive drug. Unbelievable. Finally, after my brain started working again, I remembered that I was a veteran, went to them, signed up and now receive all my meds absolutely free. This includes the above drugs, plus my Oxycodone (expensive), prednisone, xanax, blood pressure stuff, etc, etc. This gave me a huge pay raise, as I'm still unable to work (too weak, generally). I can do chores for 2 hours max, then I have to stretch out. This I can handle with ease, as the surgeon told me after the transplant that I would have died within 2 months otherwise. I am very blessed and fortunate, and try to give my thanks daily. I hope I will never whine again about how I feel, as it could always be worse, as it was. The only good thing is that when I was at my lowest point, my brain did not function properly, and I totally forget all the weeks of pain, IV's, near death declarations by the Docs and so on. I do believe, as you posted fairly recently, that your brother was not cognizant of his condition, and was not feeling the pain that you and his other loved ones were feeling. That is something that you must hold onto with strength, to ease your lifelong awareness of your brother's problems. I read all your posts with pain and with the joy that you seem to understand the process of the life cycle we all are in. Re: Re: Follow up care? I'm assuming you'll need to take the anti-rejection drugs for the rest of your life, but at least no more of the Hep C treatment drugs. My doctors also say they do not expect me to have to treat after transplant. That we will work on keeping me and my new liver healthy. Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 Have you applied for Social Security Disability? You could then have Medicare and I believe they cover the drugs too. I am in the VA healthcare system, but I also have insurance at work. The VA doesn't cover all meds. I tried to get Alegria from them, but they don't. I found www.rxoutreach.com while looking for something for my brother, and saw that I qualify (based on family size and income...a single person can make a little over $30,000.00 per year and still qualify. So I get my meds from the best sources{ Linispril 40 mg 180 days supply = $20 = Rxoutreach Allegria = rxoutreach flonaise = rxoutreach Metformin ER = Target $10 for 3 months Naproxis = Target $10 for 3 months The problem I have with the VA is they are in South Austin, and I live in North Austin. It'll take around 2 hours there and 2 hours back, so basically a day off work. Depending on what the insurance goes up to in June, I might drop it and do the VA. I wish the VA would let you use your own doctor instead of theirs. I don't get any prescriptions using my insurance from work because there are cheaper alternatives. You are right on the money! The problem is that the anti-rejection drugs (typically "Prograf") is terribly expensive. I had been taking 60mg per day, and even with insurance, it cost around $1150.00 per month, I believe. Plus, I was also on Valcite, which was another very expensive drug. Unbelievable. Finally, after my brain started working again, I remembered that I was a veteran, went to them, signed up and now receive all my meds absolutely free. This includes the above drugs, plus my Oxycodone (expensive), prednisone, xanax, blood pressure stuff, etc, etc. This gave me a huge pay raise, as I'm still unable to work (too weak, generally). I can do chores for 2 hours max, then I have to stretch out. This I can handle with ease, as the surgeon told me after the transplant that I would have died within 2 months otherwise. I am very blessed and fortunate, and try to give my thanks daily. I hope I will never whine again about how I feel, as it could always be worse, as it was. The only good thing is that when I was at my lowest point, my brain did not function properly, and I totally forget all the weeks of pain, IV's, near death declarations by the Docs and so on. I do believe, as you posted fairly recently, that your brother was not cognizant of his condition, and was not feeling the pain that you and his other loved ones were feeling. That is something that you must hold onto with strength, to ease your lifelong awareness of your brother's problems. I read all your posts with pain and with the joy that you seem to understand the process of the life cycle we all are in. -----Original Message----- From: Bill Eastman Sent: Dec 20, 2010 6:27 PM To: Hepatitis_C_Central Subject: Re: Re: Follow up care?  I'm assuming you'll need to take the anti-rejection drugs for the rest of your life, but at least no more of the Hep C treatment drugs. My doctors also say they do not expect me to have to treat after transplant. That we will work on keeping me and my new liver healthy. Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 To : I'm so sad to hear of your decision not to have a transplant, but I understand. I'm jealous that you got to swim with the dolphins at Sea World. I just got back from Orlando and it was cold when we were there, but swimming with the dolphins at Sea World was just too expensive for me anyway. I'm so glad that you don't have to do treatment after the transplant, Rick. The Hep C came back to me immediately after transplant. It is encouraging to people that not all people need to do the treatment after transplant. I'm doing really well and am still undetected after a year of finishing treatment. Penny > > > > > > > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even > > started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now I try eat well see my doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 Dear Bill; Yes, I'm on SS Disability and have been for 3 years. The VA encourages you to use your own Doctors! I have a Word doc that has all my medications, dosages and when taken each day. Attached are a list of all my Docs, with addresses, phone, fax and email addresses. Plus, a list of emergency contacts and a page of my life's pertinent medical issues, beginning with tonsillectomy at age 7. When I first saw the assigned VA Doc, he simply read everything over, and prescribed exactly everything that I was taking! There was one med, Zocor, that they do not yet supply, so that is the only one I have to purchase privately. I have to see him every 3-4 months. All my meds I can order online, with the exception of Xanax and Ocycodone, which I have to call in monthly. I reorder about 2 weeks before running out, and then every med is mailed to me. It was so simple that I was shocked. I haven't seen any other Doctor at the VA for anything at all, and my assigned Doc seems to respect all that my private Docs are doing and prescribing. I have never come close to running out of a med. The biggest chore is keeping a proper log so that I know exactly when to reorder. If you're spending even $100 per month, I would consider taking a day off for the trip. Then explain to the Doc your travel dilemma to see if you can schedule your appointments further apart. The costs of meds I discussed in my earlier post were WITH Medicare! I hit that " doughnut " hole within 2-3 months, where the price goes through the roof. Now it's all free. Your costs may be low enough to not bother with the VA, but if you prepare everything in a Word doc (or OpenOffice.com doc), they'll probably accept what you put down as gospel. Hey, it works for me wonderfully, but I only have to drive 15 minutes, so your situation is quite different. Just some more things to ponder! > > Have you applied for Social Security Disability? You could then have > Medicare and I believe they cover the drugs too. > > I am in the VA healthcare system, but I also have insurance at work. > The VA doesn't cover all meds. I tried to get Alegria from them, but > they don't. I found www.rxoutreach.com while looking for something for > my brother, and saw that I qualify (based on family size and income...a > single person can make a little over $30,000.00 per year and still > qualify. So I get my meds from the best sources{ > > Linispril 40 mg 180 days supply = $20 = Rxoutreach > Allegria = rxoutreach > flonaise = rxoutreach > Metformin ER = Target $10 for 3 months > Naproxis = Target $10 for 3 months > > The problem I have with the VA is they are in South Austin, and I live > in North Austin. It'll take around 2 hours there and 2 hours back, so > basically a day off work. > > Depending on what the insurance goes up to in June, I might drop it and > do the VA. I wish the VA would let you use your own doctor instead of > theirs. > I don't get any prescriptions using my insurance from work because there > are cheaper alternatives. Quote Link to comment Share on other sites More sharing options...
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