Guest guest Report post Posted July 25, 2005 Welcome to the group.Sorry to hear treatment damaged your family.Did the treatment work? Gail http://deveauxkennels.tk mailto:gaila@... -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of danneSent: July 21, 2005 11:55 PMHepatitis CSupportGroupForDummies Subject: Re: Intro WELCOME TO THE GROUP!!! d Jen Kornegay <diegowench@...> wrote: I didn't stop the treatment. I did one year of Peg Intron. Just saying that there is no way I would or could ever do it again. It did a lot of damage to my family - damage that cannot be undone sadly enough. But I did stick through it... I actually was considering having another baby lol - so my son took me to Wal-Mart - that usually cures me of the baby-itis lol. JenPat McBride <pmcbride1@...> wrote: Welcome aboard Jen...Im Patty from Texas and have been through tx and Im now 1 yr posttreatment and back to work...Youve got your hands full..4 kiddos...my last just graduated from high school.... Why did you stop treatment? And how long were you on it?...Welcome once again!...Hugs, Patty Intro Hello all, Just wanted to introduce myself. My name is Jen, I have been dx'd for around 7 - 8 years. Already did one round with Peg Intron, and decided afterwards, that there is no way that I would ever do it again. It was pretty harsh as I am also bipolar... Anyways, I live in San Diego, CA, have four kids aged - 17, 13, 8 and 4. I work at a yacht sales brokerage - doing transaction coordination, listing coordination, closing coordination, web and graphic design and whatever else... lol - I love it. My husband is career Navy been in for 20 years. Sooo, I guess that is it. Jen Do you ? - Find what you need with new enhanced search. Learn more. __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 25, 2005 Yes, but my reaction was so extreme, that it almost ended my marriage.Gail Deveaux <gaila@...> wrote: Welcome to the group.Sorry to hear treatment damaged your family.Did the treatment work? Gail http://deveauxkennels.tk mailto:gaila@... -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of danneSent: July 21, 2005 11:55 PMHepatitis CSupportGroupForDummies Subject: Re: Intro WELCOME TO THE GROUP!!! d Jen Kornegay <diegowench@...> wrote: I didn't stop the treatment. I did one year of Peg Intron. Just saying that there is no way I would or could ever do it again. It did a lot of damage to my family - damage that cannot be undone sadly enough. But I did stick through it... I actually was considering having another baby lol - so my son took me to Wal-Mart - that usually cures me of the baby-itis lol. JenPat McBride <pmcbride1@...> wrote: Welcome aboard Jen...Im Patty from Texas and have been through tx and Im now 1 yr posttreatment and back to work...Youve got your hands full..4 kiddos...my last just graduated from high school.... Why did you stop treatment? And how long were you on it?...Welcome once again!...Hugs, Patty Intro Hello all, Just wanted to introduce myself. My name is Jen, I have been dx'd for around 7 - 8 years. Already did one round with Peg Intron, and decided afterwards, that there is no way that I would ever do it again. It was pretty harsh as I am also bipolar... Anyways, I live in San Diego, CA, have four kids aged - 17, 13, 8 and 4. I work at a yacht sales brokerage - doing transaction coordination, listing coordination, closing coordination, web and graphic design and whatever else... lol - I love it. My husband is career Navy been in for 20 years. Sooo, I guess that is it. Jen Do you ? - Find what you need with new enhanced search. Learn more. __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Hi, Di. Glad you found us. I’m a/k/a De, 48, single mom to 2 teens & 1 furkid in GA. Undetectable 6 months after treatment. What an idiot doc you had in 95. Sorry to hear that. “Measurable viral load” isn’t much info. You’ll need a liver biopsy to see how much damage there is. Has the new doc said anything about biopsy? Genotype? Treatment? We’re a big loving family here. We’ll help you understand it all and will shoot straight when you ask us anything. Hugs, De Intro Hi I am Di 52 yo " Mom " to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a " measurable viral load " (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love, Di May the most that you pray for be the least that you get. godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 No, she didn't say anything like that. I'm a Medicaid patient and so getting quality medical care is a REAL challenge and sometimes it's just not possible. As far as treatment goes she said, "Let's wait a few months and see what happens." Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Hello Di, Welcome. glad that your other doctor was wrong!!! I don't know anything about "viral load" as I am new here, learning my self. good luck, Ali Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 I've been reading the posts as they come in but there seem to be a lot of abbreviations, I guess I'll figure it out as we go along. What can you tell me about what to expect? Do you know of anything that I can be doing now to keep this from getting any worse? I just need ... what? ... what do I need? ... I need to know what comes next and I need to know how long I have. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Hi Di...Are you living in a motorhome for fun or nessecity??..I would love to travel and see the country side... Some of the abbreviations are as follows: Dx= diagnoises Bx=Biopsy Tx=treatment TP=transplant PTx=posttreatment PTP=Posttransplant Did you have a Bx back in 95 to find out what stage (degree of fibrosis), stage(degree of inflamation) When I was dx I was geno type 1, stage 1 grade 2...me and De are the same...and we have both done the 48 wks of combo tx...and are undetectable so far...Take some time and read all the info that group forwards and you will be surprised to how much you will learn about this condition, disease and the ups and down of it... I caught mine at a low viral load at the beginning..39,000...but during tx at 12 weeks it rocketed to 5 million and then way back down to <50 copies, this is low as it can be read so far to date ??if I make a booboo or incorrect info please correct me..., or anyone for that matter..K?..OK... You have had hepc for 15 yrs and you are 52 yrs old...without tx this isnt a good sign...it progresses not regresses with time... Also I hope you are not a drinker..I drank up to the time I was dx...beer, whiskey and vicadin put me over the edge... Glad you are here and ask any questions you need answered..someone will help...Hugs, PatMc Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Hi Di...Are you living in a motorhome for fun or nessecity??..I would love to travel and see the country side... Some of the abbreviations are as follows: Dx= diagnoises Bx=Biopsy Tx=treatment TP=transplant PTx=posttreatment PTP=Posttransplant Did you have a Bx back in 95 to find out what stage (degree of fibrosis), stage(degree of inflamation) When I was dx I was geno type 1, stage 1 grade 2...me and De are the same...and we have both done the 48 wks of combo tx...and are undetectable so far...Take some time and read all the info that group forwards and you will be surprised to how much you will learn about this condition, disease and the ups and down of it... I caught mine at a low viral load at the beginning..39,000...but during tx at 12 weeks it rocketed to 5 million and then way back down to <50 copies, this is low as it can be read so far to date ??if I make a booboo or incorrect info please correct me..., or anyone for that matter..K?..OK... You have had hepc for 15 yrs and you are 52 yrs old...without tx this isnt a good sign...it progresses not regresses with time... Also I hope you are not a drinker..I drank up to the time I was dx...beer, whiskey and vicadin put me over the edge... Glad you are here and ask any questions you need answered..someone will help...Hugs, PatMc Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Pat, thank you for this!! I live in the motorhome because I have no where else to live. My husband of 10 years walked out in March of this year (and moved in with another woman) and before you ask that's before I found out that I still have Hep C, so it couldn't be the reason. For the 10 years that Tom and I were together we lived all over the country, but mostly in the west. we lived in California, Nevada, Arizona, New Mexico, Texas, North Carolina, and Florida (most of them more than once). No, I didn't and still haven't had a biopsy. I read up on it on the net. It doesn't sound too bad, so I'm going to ask my doctor about it when I see her on the 21st. I don't understand how it could have been getting worse when my blood work in Las Cruces, New Mexico back in I think it was September of 2003 was negative for the virus although it did show the antibodies. I am a member of Narcotics Anonymous with 23 years 5 months and 2 days of recovery (since March 11, 1982), so I don't drink at all. From what I've heard Hep C is transmitted by blood, but can it be transmitted sexually? Do I need to contact me ex and tell him that he is at risk? He is under the impression that because my test in New Mexico was negative that God had healed me of it. But, if it can be transmitted sexually he probably has it after 10 years of frequent "relations". Love,DiGod may love you,but He favors me!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 First of all, Congrats on being clean for so long..I was married for 29 yrs to mac that had hepc from the time he was about 21, his sister had it too(my best buddy)..The virus stayed dormant for all those yrs and then when they reached thier 50s they started having signs of it and began to be active...The percentage is very low to contract hepc, but its there...(hepB is very contagious sexually) ..mac and darlene were heroine addicts and mac quit using right after I met him...but continued to drink alcohol for many yrs...we all did....Yes, I would tell the ex about it...what a surprise to the new woman in his life...Just remember never feel guilty about this...shit happens!We are all victims here....and we have to deal with it the best we can and live day to day with hopes that tx will work Make sure you do not share toothbrushes, razors, nail clippers,tweezers...anything that can have even a small chance of blood to blood contact... Yes...You need a Bx.( its not bad,just uncomfortable for a little while)...and new blood labs, when you get them you get copies of all the results and keep track, it will help you understand it all. How long have you been with this doctor? Do you have insurance? I got all my tests and treatment through the university system here because my income is low... By the way...I was tested for hepc in 2000 after being married for ever..tested neg...and got sick in 2003(hospitalized)..one yr after mac and darlene died. So, it goes to show ya that all test are not correct...or I wouldnt have been stage 1 already...I think...(Im not a doctor either..heehee)...I had alot of dental work and a bladder lift after mac died too...so all I know is I contracted it and Thank God Im undetectable so far..... Drink alot of water, to keep your liver flushed, and stay away from the salt..try and not eat too much red meat its hard for the liver to break down...May I ask you your height and weight? Hope this has helped a little bit...its my version of what has happened to me....Hugs, PatMc Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 You sent me a LOT of good information here, and I thank you for it. I am 5'7" and currently weigh 140 having dropped 25 pounds since March 12th of this year (going from a size 16 to a size 8). I live alone (other than my dog and he doesn't use my toothbrush or razor and since he chews his nails that isn't a problem either). I've only been seeing her for about 6 weeks (I moved back to Porter, TX from Yuma, AZ after Tom left me and I didn't have a doctor there). I have Medicaid to cover medical expenses, but I'm not sure what the limits are on that and of course I get it because of a low income (SSI). I had Hep B back in '73, but I'm showing the antibodies for that and several doctors have told me that I'm now immune to it. When I see on the 21st I'm going to have a serious talk (I'm making a question list) with her about doing a biopsy and see what she says (do you know what a PAC is, that what it says on her card)? You said that Mac became symptomatic in his early 50's, I am 52. Mostly I eat cheeses and chicken, Banquet frozen dinners have a chicken finger dinner that comes with fries and a brownie for 88 cents and 570 calories I eat that a LOT. When you say a lot of water how much are you talking about? I know 8 - 8 oz glasses is recommended. I appreciate this more than I can say! Love,DiGod may love you,but He favors me!godsowndi@... Re: Intro First of all, Congrats on being clean for so long..I was married for 29 yrs to mac that had hepc from the time he was about 21, his sister had it too(my best buddy)..The virus stayed dormant for all those yrs and then when they reached thier 50s they started having signs of it and began to be active...The percentage is very low to contract hepc, but its there...(hepB is very contagious sexually) ..mac and darlene were heroine addicts and mac quit using right after I met him...but continued to drink alcohol for many yrs...we all did....Yes, I would tell the ex about it...what a surprise to the new woman in his life...Just remember never feel guilty about this...shit happens! We are all victims here....and we have to deal with it the best we can and live day to day with hopes that tx will work Make sure you do not share toothbrushes, razors, nail clippers,tweezers...anything that can have even a small chance of blood to blood contact... Yes...You need a Bx.( its not bad,just uncomfortable for a little while)...and new blood labs, when you get them you get copies of all the results and keep track, it will help you understand it all. How long have you been with this doctor? Do you have insurance? I got all my tests and treatment through the university system here because my income is low... By the way...I was tested for hepc in 2000 after being married forever..tested neg...and got sick in 2003(hospitalized)..one yr after mac and darlene died. So, it goes to show ya that all test are not correct...or I wouldnt have been stage 1 already...I think...(Im not a doctor either..heehee)...I had alot of dental work and a bladder lift after mac died too...so all I know is I contracted it and Thank God Im undetectable so far..... Drink alot of water, to keep your liver flushed, and stay away from the salt..try and not eat too much red meat its hard for the liver to break down...May I ask you your height and weight? Hope this has helped a little bit...its my version of what has happened to me....Hugs, PatMc Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 13, 2005 Di it is rarely passed by sexual contact..And very seldom passed to unborn child.. I myself am a recovering addict for 30 years..Old Iv drug user here.. And you want to hear a kicker her?? I am a licensed Medication technician!!! Kick in the pants eh!! Pats right watch your food very carefully A damaged liver won't clean toxins out of your system very well.. And in the final stages not at all..Keep all on a even keel...My body knew what it needed before my transplant.. I stopped eating all meat (ammonia levels)..The smell and taste made me ill.. I craved fresh veggies and fruit all the time..Loads of teas and water.. Pat I recommended the "Hepatitis C A survivors guide" to her.. I think every one I know has read this book..Every passage and chapter has something new and informative in it..Also there are peoples comments and observations.. For me it was a god send Love ya Kathy Boo -- Re: Intro First of all, Congrats on being clean for so long..I was married for 29 yrs to mac that had hepc from the time he was about 21, his sister had it too(my best buddy)..The virus stayed dormant for all those yrs and then when they reached thier 50s they started having signs of it and began to be active...The percentage is very low to contract hepc, but its there...(hepB is very contagious sexually) ..mac and darlene were heroine addicts and mac quit using right after I met him...but continued to drink alcohol for many yrs...we all did....Yes, I would tell the ex about it...what a surprise to the new woman in his life...Just remember never feel guilty about this...shit happens!We are all victims here....and we have to deal with it the best we can and live day to day with hopes that tx will work Make sure you do not share toothbrushes, razors, nail clippers,tweezers...anything that can have even a small chance of blood to blood contact... Yes...You need a Bx.( its not bad,just uncomfortable for a little while)...and new blood labs, when you get them you get copies of all the results and keep track, it will help you understand it all. How long have you been with this doctor? Do you have insurance? I got all my tests and treatment through the university system here because my income is low... By the way...I was tested for hepc in 2000 after being married for ever..tested neg...and got sick in 2003(hospitalized)..one yr after mac and darlene died. So, it goes to show ya that all test are not correct...or I wouldnt have been stage 1 already...I think...(Im not a doctor either..heehee)...I had alot of dental work and a bladder lift after mac died too...so all I know is I contracted it and Thank God Im undetectable so far..... Drink alot of water, to keep your liver flushed, and stay away from the salt..try and not eat too much red meat its hard for the liver to break down...May I ask you your height and weight? Hope this has helped a little bit...its my version of what has happened to me....Hugs, PatMc Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 14, 2005 I plan to get the book, but it is going to have to wait until my Uncle Sugar money comes on the first of the month as the rest of the money I still have is already committed to necessities. For the first time in a very long time I slept through the night last night without waking up. Love,DiGod may love you,but He favors me!godsowndi@... Re: Intro First of all, Congrats on being clean for so long..I was married for 29 yrs to mac that had hepc from the time he was about 21, his sister had it too(my best buddy)..The virus stayed dormant for all those yrs and then when they reached thier 50s they started having signs of it and began to be active...The percentage is very low to contract hepc, but its there...(hepB is very contagious sexually) ..mac and darlene were heroine addicts and mac quit using right after I met him...but continued to drink alcohol for many yrs...we all did....Yes, I would tell the ex about it...what a surprise to the new woman in his life...Just remember never feel guilty about this...shit happens!We are all victims here....and we have to deal with it the best we can and live day to day with hopes that tx will work Make sure you do not share toothbrushes, razors, nail clippers,tweezers...anything that can have even a small chance of blood to blood contact... Yes...You need a Bx.( its not bad,just uncomfortable for a little while)...and new blood labs, when you get them you get copies of all the results and keep track, it will help you understand it all. How long have you been with this doctor? Do you have insurance? I got all my tests and treatment through the university system here because my income is low... By the way...I was tested for hepc in 2000 after being married for ever..tested neg...and got sick in 2003(hospitalized)..one yr after mac and darlene died. So, it goes to show ya that all test are not correct...or I wouldnt have been stage 1 already...I think...(Im not a doctor either..heehee)...I had alot of dental work and a bladder lift after mac died too...so all I know is I contracted it and Thank God Im undetectable so far..... Drink alot of water, to keep your liver flushed, and stay away from the salt..try and not eat too much red meat its hard for the liver to break down...May I ask you your height and weight? Hope this has helped a little bit...its my version of what has happened to me....Hugs, PatMc Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 14, 2005 KathyBoo, Thanks for the heads up on the "Hepatitis C A survivors Guide" I hadn't read it . I just ordered in online. I love this place!!!! Thanks again Ali Re: Intro Di it is rarely passed by sexual contact..And very seldom passed to unborn child.. I myself am a recovering addict for 30 years..Old Iv drug user here.. And you want to hear a kicker her?? I am a licensed Medication technician!!! Kick in the pants eh!! Pats right watch your food very carefully A damaged liver won't clean toxins out of your system very well.. And in the final stages not at all..Keep all on a even keel...My body knew what it needed before my transplant.. I stopped eating all meat (ammonia levels)..The smell and taste made me ill.. I craved fresh veggies and fruit all the time..Loads of teas and water.. Pat I recommended the "Hepatitis C A survivors guide" to her.. I think every one I know has read this book..Every passage and chapter has something new and informative in it..Also there are peoples comments and observations.. For me it was a god send Love ya Kathy Boo Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 14, 2005 Hi Di I am Gail.I got my hep in the mid 60's when I had my son I needed a couple of transfusions.I wasn't diagnosed until 91.I am genotype 1 and had treatment in 98-99 for 52 wks of interferon at three shots a wk and riboveron,5 pills a day and within 3wks they reduced the riboveron to three pills a day.I am one of the fortunate ones where I have been undetectable since treatment.I will show positive for hep c,but no viral load which is as close as there is to a cure.Welcome to our group and we are all learning here so there are no silly questions. Gail http://deveauxkennels.tk mailto:gaila@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 14, 2005 I have been trying to figure out how I could have gotten this since I was first diagnosed. As best I can figure it either came from blood transfusions in '74 because of complications in childbirth (my youngest) or IV drug abuse '71 to '82. If it were sexually transmitted I would think that I could have gotten it from my 2nd husband who believed that fidelity meant no more than one woman per day and some of those women were the kind who hung out at crack houses and traded themselves for drugs. I have heard some real nightmare stories about Interferon, how bad is it? Love,DiGod may love you,but He favors me!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 Hi Di, I'm SuZie (I write it that way because we have 2 Suzies here, one with an s & one with a z, I'm the z) I live up here in the Great White North - Thunder Bay, Ontario, Canada with my little furbaby SpYke, (who is mostly Himalayan) you will hear more about him - he's the Galactic Overlord in Training, so far I'm all he's trained. I was diagnosed HCV+ in the early '90s - don't ask me to get any more specific than that - I live in a permanent fog, no short term memory at all. Been on tx twice, once interferon alone & once interferon & ribivirin but did not respond either time except for the world's worst side effects. I'm scheduled for a biopsy tomorrow to see if things have gotten any worse than they were the last time & to give my doc a base line for treatment again. Last bx(biopsy) said I have cirrhosis . As far as how much time you have - when I was first dx'd(diagnosed) I asked my Gastro that very question & he said he couldn't guess. Hep C isn't like cancer, it can flare up & calm down. My Gastro told me that if it didn't flare up I could live a normal lifespan, if it did flare up, I could be dead in 6 months or I could walk out of his office, get hit by a bus & die on my way to the E R, there's no way to predict it. Well, he was right, I'm still here & he isn't. He was 46 & the father of 2 small boys. He developed an auto-immune disorder & was dead within six months. Who knows what's going to happen tomorrow? The only thing you can do is take good care of yourself - no drugs or booze, eat right, make sure you get enough sleep & no stress. If your doc thinks you should do tx, do it I'll be doing it for the third time as soon as I get my biopsy results. A biopsy gives the most accurate picture of what's going on in your liver, ask your doc if he thinks you should have one. Anyways, welcome to the family, we're a nutty bunch but very supportive.SuZie & SpYke Di <godsowndi@...> wrote: I've been reading the posts as they come in but there seem to be a lot of abbreviations, I guess I'll figure it out as we go along. What can you tell me about what to expect? Do you know of anything that I can be doing now to keep this from getting any worse? I just need ... what? ... what do I need? ... I need to know what comes next and I need to know how long I have. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 Hi Di, I'm SuZie (I write it that way because we have 2 Suzies here, one with an s & one with a z, I'm the z) I live up here in the Great White North - Thunder Bay, Ontario, Canada with my little furbaby SpYke, (who is mostly Himalayan) you will hear more about him - he's the Galactic Overlord in Training, so far I'm all he's trained. I was diagnosed HCV+ in the early '90s - don't ask me to get any more specific than that - I live in a permanent fog, no short term memory at all. Been on tx twice, once interferon alone & once interferon & ribivirin but did not respond either time except for the world's worst side effects. I'm scheduled for a biopsy tomorrow to see if things have gotten any worse than they were the last time & to give my doc a base line for treatment again. Last bx(biopsy) said I have cirrhosis . As far as how much time you have - when I was first dx'd(diagnosed) I asked my Gastro that very question & he said he couldn't guess. Hep C isn't like cancer, it can flare up & calm down. My Gastro told me that if it didn't flare up I could live a normal lifespan, if it did flare up, I could be dead in 6 months or I could walk out of his office, get hit by a bus & die on my way to the E R, there's no way to predict it. Well, he was right, I'm still here & he isn't. He was 46 & the father of 2 small boys. He developed an auto-immune disorder & was dead within six months. Who knows what's going to happen tomorrow? The only thing you can do is take good care of yourself - no drugs or booze, eat right, make sure you get enough sleep & no stress. If your doc thinks you should do tx, do it I'll be doing it for the third time as soon as I get my biopsy results. A biopsy gives the most accurate picture of what's going on in your liver, ask your doc if he thinks you should have one. Anyways, welcome to the family, we're a nutty bunch but very supportive.SuZie & SpYke Di <godsowndi@...> wrote: I've been reading the posts as they come in but there seem to be a lot of abbreviations, I guess I'll figure it out as we go along. What can you tell me about what to expect? Do you know of anything that I can be doing now to keep this from getting any worse? I just need ... what? ... what do I need? ... I need to know what comes next and I need to know how long I have. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 Thanks SuZie! I appreciate that. I am going to get the lady that I've been seeing to refer me to MD as I feel that I can get better care there from their doctors and such than from a Physician's Assistant working for the county. Either way I am going to push for a bx and based on that result push for getting on tx asap. Win, lose, or draw I want to fight the "good fight". I refuse to just lay down and concede defeat. Someone once did one of those readings on me and said that I was fated to kill the dragon, so now I sally forth as a Dragon Slayer! I love being here and over time I will get to know everyone, I look forward to that! Does this group have a policy on sig tags? Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 Keep that attitude Di.Yes you will have bad days and when that heppens slow down and give your body a rest.Take good care of yourself and fight this dragon all the way.It worked for me Gail http://deveauxkennels.tk mailto:gaila@... -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of DiSent: August 18, 2005 3:05 PMHepatitis CSupportGroupForDummies Subject: Re: Intro Thanks SuZie! I appreciate that. I am going to get the lady that I've been seeing to refer me to MD as I feel that I can get better care there from their doctors and such than from a Physician's Assistant working for the county. Either way I am going to push for a bx and based on that result push for getting on tx asap. Win, lose, or draw I want to fight the "good fight". I refuse to just lay down and concede defeat. Someone once did one of those readings on me and said that I was fated to kill the dragon, so now I sally forth as a Dragon Slayer! I love being here and over time I will get to know everyone, I look forward to that! Does this group have a policy on sig tags? Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 Keep that attitude Di.Yes you will have bad days and when that heppens slow down and give your body a rest.Take good care of yourself and fight this dragon all the way.It worked for me Gail http://deveauxkennels.tk mailto:gaila@... -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of DiSent: August 18, 2005 3:05 PMHepatitis CSupportGroupForDummies Subject: Re: Intro Thanks SuZie! I appreciate that. I am going to get the lady that I've been seeing to refer me to MD as I feel that I can get better care there from their doctors and such than from a Physician's Assistant working for the county. Either way I am going to push for a bx and based on that result push for getting on tx asap. Win, lose, or draw I want to fight the "good fight". I refuse to just lay down and concede defeat. Someone once did one of those readings on me and said that I was fated to kill the dragon, so now I sally forth as a Dragon Slayer! I love being here and over time I will get to know everyone, I look forward to that! Does this group have a policy on sig tags? Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 I got phone numbers for the CDC and several liver institutes. I will be calling all of them tomorrow to see if they can help me to find competent care in this area. Once I find out where I can go I will be calling the Medicaid office to find out about signing up for rides. As I said I am NOT going to let this thing walk on me. Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2005 I got phone numbers for the CDC and several liver institutes. I will be calling all of them tomorrow to see if they can help me to find competent care in this area. Once I find out where I can go I will be calling the Medicaid office to find out about signing up for rides. As I said I am NOT going to let this thing walk on me. Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 19, 2005 Go for it girl.You have the right attitude. Gail http://deveauxkennels.tk mailto:gaila@... -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of DiSent: August 18, 2005 11:23 PMHepatitis CSupportGroupForDummies Subject: Re: Intro I got phone numbers for the CDC and several liver institutes. I will be calling all of them tomorrow to see if they can help me to find competent care in this area. Once I find out where I can go I will be calling the Medicaid office to find out about signing up for rides. As I said I am NOT going to let this thing walk on me. Love,Di I'm not where I want to be,but I'm well on my way!godsowndi@... Intro Hi I am Di 52 yo "Mom" to my furkid, Shadow (black lab mix). We are currently living in my motorhome in Porter, Tx which is about 35 miles north of Houston up US 59. I was originally diagnosed in March of 1995 and was told that there was nothing that could be done and that I would be dead within 3 years. Obviously he was wrong. My new doctor is now saying that I'm carrying a "measurable viral load" (you probably understand that), so I'm trying to find out what I should/need/can do at this point. Love,DiMay the most that you pray forbe the least that you get.godsowndi@... Next time I'm coming back as a cat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 9, 2005 Hello Benita Welcome to the list. I am Theresa and I have adopted 3 children all with different emotional needs. Our last daughter that we adopted this year is also asperger's. I am a home school mom as well and know it can be hard sometimes. I have found that has no patience with others, And drives me nuts at times with her pacing..LOL Blessings To You,Theresa Are you a Home School Parent to Special needs Child.Check out !!!LearningtoCopeHomeEducation/ Quote Share this post Link to post Share on other sites
