Guest guest Posted January 28, 2012 Report Share Posted January 28, 2012 Hi Marla,You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone).This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years. I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid.Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done.Love,Sheila To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 1:41 PM Subject: just beginning My name is Marla. Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. Tried other board but really am looking for something more personal with people that have actually been through all this. Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. Normal family environment, no tragedies and then this comes along. Go figure. I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2012 Report Share Posted January 28, 2012 Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!! Hang in there, hope things go easier for you than it seemed the last couple of times. > > Hi Marla, > > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone). > > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid. > > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done. > > Love, > Sheila > > > > ________________________________ > > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM > Subject: just beginning > > >  > My name is Marla. > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and " absorb " all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > Normal family environment, no tragedies and then this comes along. Go figure. > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age " . Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Marla, First of all I want to welcome you to our group. We are most of the time pretty active. We have members here who have been here for years. So we are not a inactive group. I am Janet, the original owner of this group. I'd like to introduce you to the other owners,Jackie, ,Sheena(she rescues baby possums who's mother have died) and anne aka Jokester aka Momma hen. You will find this group very helpful in that we have lots of varied members who have experience with all sorts of aspects of this disease. We have members who have had liver transplants, Some who have been through treatment many times and some who are going through treatment for the first time. We are here for everyone and will try to answer your questions as best as we can. I for one have been through treatment 3 times, and this last time, I was fully successful in beating the virus!! I am one hundred percent better and for 58 I am running circles around people younger than me. Hmmm must be because I have a new lease on life. *big smile* Let us know what we can do to help. Sincerely, 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 To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 12:41 PMSubject: just beginning My name is Marla.Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec.Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess.Tried other board but really am looking for something more personal with people that have actually been through all this. Married for 33 years ( he was tested negative). 2 kids, 5 grand kids.Normal family environment, no tragedies and then this comes along. Go figure.I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 I drank coffee the whole time I was on treatment. LOL Sometime was the only thing that I could drink in the morning. I did drink lots of water, husband put a water filter on the house so that helped. I didn't have to go and spend massive of amounts of money on bottled water. Water here in Texas, or at least my region of Texas is hard and full of minerals. Last treatment, I was in a clinical trial and I took the standard treatment and a protease inhibitor. I was successful and was a life saver for me. My liver enzymes are back to normal and life is well wonderful from my point of view. I am a Genotype 1a myself. Keep that positive attitude it does help during treatment. My manta was what doesn't kill me, makes me stronger. And my husband view point of my last treatment was "it almost killed her, but she is a storm trooper who wouldn't take no guff off a stupid virus". LOL I don't remember it being any different from the other treatments that I did. But he did say it was different. I just kept a atitude that I was going to beat this virus and that was it!! Good luck hon. We are here for 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 To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 9:42 PMSubject: Re: just beginning Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!!Hang in there, hope things go easier for you than it seemed the last couple of times.>> Hi Marla,> > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone).> > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid.> > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done.> > Love,> Sheila> > > > ________________________________> > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM> Subject: just beginning> > >  > My name is Marla.> Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec.> Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess.> Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids.> Normal family environment, no tragedies and then this comes along. Go figure.> I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Thanks Janet for the welcome. I am hoping to do this one time, that's all!!! I am just believing that with the new stuff now, I can beat it the first time. Where in TX? I am SE New Mex. I can relate to the yucky water thing. I am glad that I found this group and hope it will be a good venue when I start all this stuff. I saw the email about the new group for caretakers. Good idea. I will talk to my husband and he may be interested later. He doesn't do the online thing much. Glad to know that people do kick this and go on to be functional. I have 5 grand kids that I truly want to stay active with. We play golf together, ride bikes together, go fishing and anything else that comes up. My oldest keeps saying we will go to college together. He is thirteen now, see how long he sticks with that. I graduated in 2005 with AAS and said I would continue. He asked me to go to law school with him. I said " sure " !! Plan on doing something to that affect, at the very least, see him graduate and move on with his life. > > > > Hi Marla, > > > > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone). > > > > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid. > > > > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done. > > > > Love, > > Sheila > > > > > > > > ________________________________ > > From: ned2busy <ned2busy@> > > To: Hepatitis_C_Central > > Sent: Saturday, January 28, 2012 1:41 PM > > Subject: just beginning > > > > > >  > > My name is Marla. > > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > > I was told beginning of Jan to go home and " absorb " all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > > Tried other board but really am looking for something more personal with people that have actually been through all this. > > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > > Normal family environment, no tragedies and then this comes along. Go figure. > > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age " . Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Marla, My name is Penny and I had a liver transplant because of the Hep C damaging my liver. I did the standard treatment for 52 weeks and have been done with treatment for two years now. I was undetectable after six days on treatment. The treatment wasn't hard on me at all. I didn't get sick except at the very beginning. Otherwise, it was just that my hemoglobin dropped so I needed weekly shots to keep it up in normal range. Of course, I was very tired. Drinking LOTS of water is the key to getting through treatment without many side effects. I hope you decide to do the treatment. Take care. Penny > > My name is Marla. > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and " absorb " all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > Normal family environment, no tragedies and then this comes along. Go figure. > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age " . Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 I just looked at the box of Incivek and yes, it says telaprevir. Yes, put on the lifejacket and hang on (thanks for the smile). I really am amazed at how good I feel for as mentioned this is my third time on Ribovirin and interferon and I honestly think the liguid (64oz) and food intake are helping. I know last 2 times I didn't want to eat and really didn't care about drinking liquid but since I have to eat 20gms of fat with the incivek that is helping me keep my food intake and I am drinking a lot of Diet Twist Up from Walmart. I could not drink water (boring) and really haven't done that since starting the meds last Wednesday. But I can drink rootbeer, sprite, etc. I'm not working right now and sleeping quite a bit but I think that is helping me also. Too bad they didn't have a type of temporary disability for people like us to take care of the bills while on the medicine (I have a great husband who is working o/t to make up the difference). I take the incivek for 12 weeks, as long as my hep c is undetectable I continue the Ribavirin and Interferon for 36 weeks and I think I'm going to treat those two as the incivek...keep eating 20gms of fat and drink at least 64oz of non caffeine liquid (guess I better ask my doctor).I am getting a blood test once a week and will keep you guys informed on how things turn out there. My count was 6,861,930 to start.Have a good night ned2busy. Oh, remember, God does let everything happen whether we see it as positive or negative. I'm also an alcoholic (quit drinking in 2006 after 2 DUI's in a 10 month period). If it wasn't for the DUI's I would still be drinking and most likely be dead...always think positive for the outcome (whether it be 10 or 40 years from now) it will all make sense.One more thing (sorry about all the typing) but definitely take a happy pill (anti-depressant) for I really suffered mentally with the medicines and that is expected. Please don't wait and see how it affects you.Love,Sheila To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 10:42 PM Subject: Re: just beginning Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!! Hang in there, hope things go easier for you than it seemed the last couple of times. > > Hi Marla, > > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone). > > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid. > > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done. > > Love, > Sheila > > > > ________________________________ > > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM > Subject: just beginning > > >  > My name is Marla. > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > Normal family environment, no tragedies and then this comes along. Go figure. > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Good luck. As one who just successfully completed treatment (unless there is a relapse), I can say it is hard but worth it. Don't give up.This too will pass. Maurice To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Sunday, January 29, 2012 5:32 PM Subject: Re: Re: just beginning I just looked at the box of Incivek and yes, it says telaprevir. Yes, put on the lifejacket and hang on (thanks for the smile). I really am amazed at how good I feel for as mentioned this is my third time on Ribovirin and interferon and I honestly think the liguid (64oz) and food intake are helping. I know last 2 times I didn't want to eat and really didn't care about drinking liquid but since I have to eat 20gms of fat with the incivek that is helping me keep my food intake and I am drinking a lot of Diet Twist Up from Walmart. I could not drink water (boring) and really haven't done that since starting the meds last Wednesday. But I can drink rootbeer, sprite, etc. I'm not working right now and sleeping quite a bit but I think that is helping me also. Too bad they didn't have a type of temporary disability for people like us to take care of the bills while on the medicine (I have a great husband who is working o/t to make up the difference). I take the incivek for 12 weeks, as long as my hep c is undetectable I continue the Ribavirin and Interferon for 36 weeks and I think I'm going to treat those two as the incivek...keep eating 20gms of fat and drink at least 64oz of non caffeine liquid (guess I better ask my doctor).I am getting a blood test once a week and will keep you guys informed on how things turn out there. My count was 6,861,930 to start.Have a good night ned2busy. Oh, remember, God does let everything happen whether we see it as positive or negative. I'm also an alcoholic (quit drinking in 2006 after 2 DUI's in a 10 month period). If it wasn't for the DUI's I would still be drinking and most likely be dead...always think positive for the outcome (whether it be 10 or 40 years from now) it will all make sense.One more thing (sorry about all the typing) but definitely take a happy pill (anti-depressant) for I really suffered mentally with the medicines and that is expected. Please don't wait and see how it affects you.Love,Sheila To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 10:42 PM Subject: Re: just beginning Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!! Hang in there, hope things go easier for you than it seemed the last couple of times. > > Hi Marla, > > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone). > > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid. > > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done. > > Love, > Sheila > > > > ________________________________ > > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM > Subject: just beginning > > >  > My name is Marla. > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > Normal family environment, no tragedies and then this comes along. Go figure. > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Thank you for your information Janet and we are all very grateful that you and others started this website for those of us with the virus. As far as the coffee, it is better then nothing (that is a fact) but it does dehydrate and that is something we don't want to do if at all possible. Good for you that you drink water (for that is the best to drink since there are not additives) and thank God for you husband for he is a blessing.You are an angel Janet and that is just what we need in our family for we are all family! To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Sunday, January 29, 2012 9:50 AM Subject: Re: Re: just beginning I drank coffee the whole time I was on treatment. LOL Sometime was the only thing that I could drink in the morning. I did drink lots of water, husband put a water filter on the house so that helped. I didn't have to go and spend massive of amounts of money on bottled water. Water here in Texas, or at least my region of Texas is hard and full of minerals. Last treatment, I was in a clinical trial and I took the standard treatment and a protease inhibitor. I was successful and was a life saver for me. My liver enzymes are back to normal and life is well wonderful from my point of view. I am a Genotype 1a myself. Keep that positive attitude it does help during treatment. My manta was what doesn't kill me, makes me stronger. And my husband view point of my last treatment was "it almost killed her, but she is a storm trooper who wouldn't take no guff off a stupid virus". LOL I don't remember it being any different from the other treatments that I did. But he did say it was different. I just kept a atitude that I was going to beat this virus and that was it!! Good luck hon. We are here for 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 To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 9:42 PMSubject: Re: just beginning Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!!Hang in there, hope things go easier for you than it seemed the last couple of times.>> Hi Marla,> > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone).> > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid.> > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done.> > Love,> Sheila> > > > ________________________________> > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM> Subject: just beginning> > >  > My name is Marla.> Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec.> Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess.> Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids.> Normal family environment, no tragedies and then this comes along. Go figure.> I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hello Marla, Sorry to hear about your diagnosis. You might want to look at all the links I have on my webpage, www.ke5asu.com/links.html It gets updates from Medical News Today automatically on Hep C. I recommend "Dr. Palmer's Guide to Hepatitis & Liver Disease", available at Amazon.com and other bookstores. It really helped me as it explained everything. There are a couple of FREE books on my website. My brother died from Hep C & Cirrosis of the Liver two years ago. When he got diagnosed he already had Ciroosis of the Liver stage 4. He got it from a blood transfussion in 1977. He got diagnosed around 30 years after that. He went on Social Security Disability, and Medicare after the 18 month waiting period. He was on COBRA prior to Medicare. Since my brother has died, I don't update the page any more or look for information, but like I said above, it does get some updates automatically. Love, Bill My name is Marla. Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. Tried other board but really am looking for something more personal with people that have actually been through all this. Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. Normal family environment, no tragedies and then this comes along. Go figure. I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. -- Bill Eastman www.ke5asu.com/links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Thanks Maurice (I love saying your name...I pronounce it like mordese, lol),Thanks for the Good luck and with people like you around, I can make it! I love the say "This too will pass"Sheila To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Sunday, January 29, 2012 5:47 PM Subject: Re: Re: just beginning Good luck. As one who just successfully completed treatment (unless there is a relapse), I can say it is hard but worth it. Don't give up.This too will pass. Maurice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 I drank alot of diet ginger ale too. Especially on those days that I was nauseated. Drinking lots of liquids helps with the side effects so much. Sometimes the ginger ale didn't get it, so a glass ice water did the trick with a squeeze of lime or lemon. Good luck hon, you deserve it. 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 To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Sunday, January 29, 2012 4:32 PMSubject: Re: Re: just beginning I just looked at the box of Incivek and yes, it says telaprevir. Yes, put on the lifejacket and hang on (thanks for the smile). I really am amazed at how good I feel for as mentioned this is my third time on Ribovirin and interferon and I honestly think the liguid (64oz) and food intake are helping. I know last 2 times I didn't want to eat and really didn't care about drinking liquid but since I have to eat 20gms of fat with the incivek that is helping me keep my food intake and I am drinking a lot of Diet Twist Up from Walmart. I could not drink water (boring) and really haven't done that since starting the meds last Wednesday. But I can drink rootbeer, sprite, etc. I'm not working right now and sleeping quite a bit but I think that is helping me also. Too bad they didn't have a type of temporary disability for people like us to take care of the bills while on the medicine (I have a great husband who is working o/t to make up the difference). I take the incivek for 12 weeks, as long as my hep c is undetectable I continue the Ribavirin and Interferon for 36 weeks and I think I'm going to treat those two as the incivek...keep eating 20gms of fat and drink at least 64oz of non caffeine liquid (guess I better ask my doctor). I am getting a blood test once a week and will keep you guys informed on how things turn out there. My count was 6,861,930 to start. Have a good night ned2busy. Oh, remember, God does let everything happen whether we see it as positive or negative. I'm also an alcoholic (quit drinking in 2006 after 2 DUI's in a 10 month period). If it wasn't for the DUI's I would still be drinking and most likely be dead...always think positive for the outcome (whether it be 10 or 40 years from now) it will all make sense. One more thing (sorry about all the typing) but definitely take a happy pill (anti-depressant) for I really suffered mentally with the medicines and that is expected. Please don't wait and see how it affects you. Love, Sheila To: Hepatitis_C_Central Sent: Saturday, January 28, 2012 10:42 PMSubject: Re: just beginning Thanks Sheila, I am genotype 1a so that seems to be the challenge. I wasn't sure about the med you mentioned Incevik but I looked it up and know it as Telaprevir. Same thing I think. Sounds really fun to me!!! I am trying to keep some kind of positive attitude but the waiting and the unknown are kicking my rear. I am not worried about losing weight at this point trust me but no coffee...that is going to be a change although I could deal with decaf I believe. Having to drink a lot may be an issue, I am lucky I drink a bottle of water a week. I appreciate your reply. I am hoping to find an active group or at the very least some individuals that are in the same boat!! Put our lifejackets on and hang on for the ride huh!!Hang in there, hope things go easier for you than it seemed the last couple of times.>> Hi Marla,> > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone).> > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid.> > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done.> > Love,> Sheila> > > > ________________________________> > To: Hepatitis_C_Central > Sent: Saturday, January 28, 2012 1:41 PM> Subject: just beginning> > >  > My name is Marla.> Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec.> Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess.> Tried other board but really am looking for something more personal with people that have actually been through all this. > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids.> Normal family environment, no tragedies and then this comes along. Go figure.> I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 I live in a small town just southwest of San .Only 15 miles from Lackland AFB. Husband works at Lackland AFB, and I work way up on the Northwest side of San , right by I-10. Can see I-10 from my desk at work. LOL I forgot to tell you that I reached 0 within 12 days of starting this last treatment and it is going on 2 years since the end of treatment and I still remain 0. Yeah that is great. I am a college addict, I love going to school. I am thinking of going to Incarnate Word University here in San ,or going to University of Texas in Austin for Pharmacy. I finished in August a pharmacy tech course here, Before that I was a nurse for 20 plus years. All that while I was taking courses in college, hoping to earn a degree in Psychology. But Hep C intervended and changed my course of life.Like I said I am a nut that like to study, so Pharmacy is my love for now. LOL Right now I work for Medco Health Solutions and I love it. Good luck hon, we are here for you, right there beside you holding your hand. We are there in spirit. 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 To: Hepatitis_C_Central Sent: Sunday, January 29, 2012 3:32 PMSubject: Re: just beginning Thanks Janet for the welcome. I am hoping to do this one time, that's all!!! I am just believing that with the new stuff now, I can beat it the first time. Where in TX? I am SE New Mex. I can relate to the yucky water thing. I am glad that I found this group and hope it will be a good venue when I start all this stuff. I saw the email about the new group for caretakers. Good idea. I will talk to my husband and he may be interested later. He doesn't do the online thing much. Glad to know that people do kick this and go on to be functional. I have 5 grand kids that I truly want to stay active with. We play golf together, ride bikes together, go fishing and anything else that comes up. My oldest keeps saying we will go to college together. He is thirteen now, see how long he sticks with that. I graduated in 2005 with AAS and said I would continue. He asked me to go to law school with him. I said "sure"!! Plan on doing something to that affect, at the very least, see him graduate and move on with his life.> >> > Hi Marla,> > > > You and I are in the same boat (maybe we were 30 years ago,lol). I got my virus from sharing needles in my early 20's and I myself am also 51 years old. I am at stage 2 1/2 but that is after 30 years and they say it is a silent killer (which means most are not aware they have it and it does take a long time to kill someone).> > > > This is my third time on the medicine but I was only on ribaviran and peginterferon the first two times around and now include incivik which is made for genotype 1 patients, which is what I have. Including the Incivik, it has a 85% of ridding the disease in my body. If this does not rid my body, there is no more treatment for me and I will live out the disease and most likely get cirrhosis. But honestly, I know that will take many years and probably by then, it will be my time anyway. I laugh for at age 51 parts of my body hurt (many people feel the same way and they don't have hep C) so I can only imagine how I will feel in 20 years.  > > > > > > I have been married for almost 26 years and my husband doesn't carry the disease either. Look at it this way Marla, you can't change what happened, don't blame anyone (even yourself) for it is done and all really does happen for a reason. > > > > > > Taking the incivek this time I have to eat 20grams of fat 3 times a day and liguid is the most important thing. The last 2 times I have taken the medicine I think my biggest problem was dehydration. Since I have to keep track of my fat eaten (I write everything down now) I also write down how many oz of liquid I drink. Whether you take incivek or the other meds available today, drink liquid and that doesn't mean cola, coffee, etc. Since those have caffeine that dehydrates you. I've been told to drink at least 64 oz of liquid a day and if I drank cola or coffee, I would have to drink a non caffeine drink to make up for that and still drink 64oz daily. > > > > > > I am on day 4, do my shot on Wednesdays @ 8:00 pm and I did feel like pooh pooh that night but other then that, I really feel good and I'm giving credit to the liquid.> > > > Any questions or comments, please feel free to ask. What I have been through, go for the medicine for the sooner you start the sooner you will be done.> > > > Love,> > Sheila> > > > > > > > ________________________________> > From: ned2busy <ned2busy@>> > To: Hepatitis_C_Central > > Sent: Saturday, January 28, 2012 1:41 PM> > Subject: just beginning> > > > > >  > > My name is Marla.> > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec.> > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > > I was told beginning of Jan to go home and "absorb" all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess.> > Tried other board but really am looking for something more personal with people that have actually been through all this. > > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids.> > Normal family environment, no tragedies and then this comes along. Go figure.> > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age". Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 And without people like you Janet, we wouldn't make it. Someone else mentioned Ginger Ale also and maybe I need to stop drinking all of Walmarts diet twist up and try ginger ale....it has been around forever! Love ALWAYS,Sheila To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Tuesday, January 31, 2012 4:20 PM Subject: Re: Re: just beginning I drank alot of diet ginger ale too. Especially on those days that I was nauseated. Drinking lots of liquids helps with the side effects so much. Sometimes the ginger ale didn't get it, so a glass ice water did the trick with a squeeze of lime or lemon. Good luck hon, you deserve it. 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 January 31, 2012 Report Share Posted January 31, 2012 I drank 's Frosty and Mexican Coke for the whole treatment. The key to the highway! Maurice To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Tuesday, January 31, 2012 5:33 PM Subject: Re: Re: just beginning And without people like you Janet, we wouldn't make it. Someone else mentioned Ginger Ale also and maybe I need to stop drinking all of Walmarts diet twist up and try ginger ale....it has been around forever! Love ALWAYS,Sheila From: Janet To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Tuesday, January 31, 2012 4:20 PM Subject: Re: Re: just beginning I drank alot of diet ginger ale too. Especially on those days that I was nauseated. Drinking lots of liquids helps with the side effects so much. Sometimes the ginger ale didn't get it, so a glass ice water did the trick with a squeeze of lime or lemon. Good luck hon, you deserve it. 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 February 1, 2012 Report Share Posted February 1, 2012 Thanks for the note Bill and the info. I will go look at your site and see what I can find. Do I take you don't have hep but as a family member you still are greatly affected by this disease? That is the thing...I do worry how this will affect my family at some point. Hopefully we will be able to get through this fairly easy as we are pretty close so I don't want to upset them anymore that necessary. I appreciate your response. Anything that I can get at this point to help educate myself will be a plus. Have a good day! > > My name is Marla. > > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > > I was told beginning of Jan to go home and " absorb " all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > > Tried other board but really am looking for something more personal with people that have actually been through all this. > > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > > Normal family environment, no tragedies and then this comes along. Go figure. > > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age " . Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > > > > > -- > Bill Eastman > www.ke5asu.com/links.html <http://www.ke5asu.com/links.html> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 That is so funny because when we were kids that is what we drank when we go sick. My mom was a nurse so every time we got the flu we would get saltines and ginger ale. I gave that to my kids also. Will probably end up with a case or more of that at some point. Lot's of fizz and that always helps to me! > > And without people like you Janet, we wouldn't make it. Someone else mentioned Ginger Ale also and maybe I need to stop drinking all of Walmarts diet twist up and try ginger ale....it has been around forever! > > > Love ALWAYS, > Sheila > > > > ________________________________ > > To: " Hepatitis_C_Central " <Hepatitis_C_Central > > Sent: Tuesday, January 31, 2012 4:20 PM > Subject: Re: Re: just beginning > > > > I drank alot of diet ginger ale too. Especially on those days that I was nauseated. Drinking lots of liquids helps with the side effects so much. Sometimes the ginger ale didn't get it, so a glass ice water did the trick with a squeeze of lime or lemon. > Good luck hon, you deserve it. > 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 February 1, 2012 Report Share Posted February 1, 2012 Wow, thanks Penny, glad to hear that you can go through this treatment fairy easily. I am expecting that for now. I really want to continue working and right now my schedule isn't conducive to being sick and not being able to do my job. I know that as long as I am working there won't be any convenient time but I figure I may as well start treatment now while I am otherwise fairly healthy and my liver still has a chance to recover some. I do worry about my high viral load at this point as it rose so quickly but since I don't know the norm I guess my chances are as good as any. Glad you are all better now. I definitely don't want to wait so long that I end up having to do the transplant thing. I think that has to be much worse for anyone. Have a good day and thanks for your thoughts. > > > > My name is Marla. > > Diagnosed last year...found out by donating blood for the very first time. I turned 51 this past summer. > > Had vl of 8 mil last Dec and 24+mil in August. Had biopsy and ct scan in Nov/Dec. > > Stage 1-2 inflammation and stage 2 fibrosis with cyst on liver and node on right lung (that was thrown in for extra I guess??) > > I was told beginning of Jan to go home and " absorb " all this and then around the end of Feb my GI will be starting a treatment with 4 patients...I can be one of them if I choos. > > For the most part have been very healthy over the years. I live a pretty clean lifestyle with the exception of margarita nights with the girls or wine periodically. Never really had an addictive personality so didn't really overdo anything. > > I was a florist for 20 years (cuts pricks and pokes). We wondered of that could have been a culprit as well as minor surgery and dental but really...I suspect that the couple of times that I tried IV(shared needle) when I was in early 20's led to this mess. > > Tried other board but really am looking for something more personal with people that have actually been through all this. > > Married for 33 years ( he was tested negative). 2 kids, 5 grand kids. > > Normal family environment, no tragedies and then this comes along. Go figure. > > I don't really discuss any details except the facts but with everything I have read over the last year, I actually don't want to scare my husband or my family. They have no clue how hard this might get. I don't either really. > > I have put on a ton of weight...35+ lbs- stress, liver function down, fear, all the above, who knows. > > I am so tired and I hurt all the time. I have had bouts of vertigo in the last few years and some seizure things that may have been signs of this but not sure. I am at a point where " how do I know what is hep and what is old age " . Was diagnosed as full blown menopause aug/sep so am on a patch and that has helped the tears. Was given an antidepressant but it is still in the cabinet as I wanted to see if hormones helped and they did. > > I have been through an identity crisis this year really. Everything that was normal for me has changed. Finished school so changed careers (hate this one really) the weight (was always thinner) tired ( was always active-riding 8 miles on my bike just 2 years ago- on the floor with my grand kids playing) can barely lift my self off the floor now. Heck of a deal. Let go of all my social ties, even church. > > I am now trying to recoup the social a bit. I am trying to fit better in my job. Have not discussed this at work as I am going to try to fake it for as long as possible. I don't really want to lose this job but not sure yet what to expect. Am dealing with the weight and it has stabilized a bit. > > We did pay off all debt except house and what medical bill deductibles I have accumulated so far. Saved all HSA from last year to meet deductible/out of pocket this year if need be. > > Now just looking forward to moving ahead with the treatment stuff and am still doubtful on that. > > Long story short, would like to read through your posts and your stories and try to get reassurance without being so afraid of what I might read and may have to face myself. Thanks for any support in advance cause right now, with the exception of my immediate family and a couple of friends. NO ONE KNOWS. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Sheila, That just gave me a chuckle...ha ha. I said it the way you spelled it and that cracked me up. Maurice, I am glad you are done with your treatment. You will NOT have a relapse...We just have to believe that for everyone!!! Me to! > > Thanks Maurice (I love saying your name...I pronounce it like mordese, lol), > > Thanks for the Good luck and with people like you around, I can make it! I love the say " This too will pass " > > Sheila > > > ________________________________ > > To: " Hepatitis_C_Central " <Hepatitis_C_Central > > Sent: Sunday, January 29, 2012 5:47 PM > Subject: Re: Re: just beginning > > > > Good luck. As one who just successfully completed treatment (unless there is a relapse), I can say it is hard but worth it. Don't give up. > This too will pass. > > Maurice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Hey Mordese! I myself have been through week one of 48 weeks so I only have 47 weeks to go, lol. I do my shot on Wednesday's @ 8:00pm and did feel pretty miserable last week so I took some Ibuprofen and slept ok that night and will do the same tonight. Goodnight to all and sweet dreams friends! To: Hepatitis_C_Central Sent: Wednesday, February 1, 2012 8:01 AM Subject: Re: just beginning Sheila, That just gave me a chuckle...ha ha. I said it the way you spelled it and that cracked me up. Maurice, I am glad you are done with your treatment. You will NOT have a relapse...We just have to believe that for everyone!!! Me to! > > Thanks Maurice (I love saying your name...I pronounce it like mordese, lol), > > Thanks for the Good luck and with people like you around, I can make it! I love the say "This too will pass" > > Sheila > > > ________________________________ > > To: "Hepatitis_C_Central " <Hepatitis_C_Central > > Sent: Sunday, January 29, 2012 5:47 PM > Subject: Re: Re: just beginning > > > > Good luck. As one who just successfully completed treatment (unless there is a relapse), I can say it is hard but worth it. Don't give up. > This too will pass. > > Maurice > Quote Link to comment Share on other sites More sharing options...
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