Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 Hello and welcome to the group. We're here for you and will try to help you in any way we can. We suggest that everyone get copies of everything, labs, biopsy, other scans and keep them in a file folder at home. That way when you have a question at 10 pm on a fri night, we can get you to get your labs and maybe we can help you answer the questions,,,Im Jax, one of the co-owners and moderators here. I treated my hep 6 years ago and am SVR now 5 years since I finised tx. I am geno 1a and had it 23 years before I was diagnosed so I had a lot of damage.. anyway, welcome!JackieFrom: i will tell when it is needed Subject: HelloTo: Hepatitis_C_Central Date: Friday, July 18, 2008, 11:58 AM Hi everyone, just joined the group and will be starting treatment within the next week.Just had a liver biopsy Wednesday 7/16 & had a few minor complications but doin ok now,thank god only had to be in the hospital one night.Have a great day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 First let me say, how thankful I am to have a found a group where I can express my fears and anxieties about what is happening to me. I am 54 years old and African-American, I was diagnosed with hcv in 2006. At the time I had no idea that it was there I didn't even know what hep c was until I researched it on internet, but now I am beginning to experience some symptoms. Such as a slight discomfort in my right side. At my age forgetfulness could be attributed to the change of life also, os I easily dismissed my forgetfulness. Anywho, my numbers are very low and I have been taking milk thistle, liver-rite and a few vitamin twice a day. My husband was diagnosed the same year and tried taking the interferon/ribaviran shot once a week and he became so sick and lost weight, I am now afraid to take the shot myself. Can anyone help I don't know what to do, I go back to see the GI next month. I am hoping for some kind of positive news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hello and Welcome, I've posted several things to new members today, so I won't repeat those things. Read those posts for that general info. Did you get a biopsy when you were diagnosed? Did you find out your genotype? Are you having lab work done regularly? Taking supplements and vitamins does help. Have you looked at Dr. Berkson protocol on the internet ? If you don't know how well you are doing with your disease, then it is hard to make a decision about treatment. I am 74, had Hep C 40+ years and have not treated. I cannot tell you how difficult treatment is or is not. And without another biopsy, I don't know how my liver is doing, so I really have no idea if I made the right or wrong decision about treatment. My enzymes are just slightly elevated, but that DOES NOT indicate the real amount of liver damage. I am on Berkson's protocol and trying some new supplements, but will wait and see before I say " wonderful " . Did your husband complete his treatment? Stay with us, read what everyone has to offer and keep us posted. Again, welcome. SuziQ > > First let me say, how thankful I am to have a found a group where I can > express my fears and anxieties about what is happening to me. > > I am 54 years old and African-American, I was diagnosed with hcv in > 2006. At the time I had no idea that it was there I didn't even know > what hep c was until I researched it on internet, but now I am > beginning to experience some symptoms. Such as a slight discomfort in > my right side. At my age forgetfulness could be attributed to the > change of life also, os I easily dismissed my forgetfulness. Anywho, > my numbers are very low and I have been taking milk thistle, liver- rite > and a few vitamin twice a day. My husband was diagnosed the same year > and tried taking the interferon/ribaviran shot once a week and he > became so sick and lost weight, I am now afraid to take the shot > myself. Can anyone help I don't know what to do, I go back to see the > GI next month. I am hoping for some kind of positive news. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 hi and welcome! yes, treatment can be very difficult but if you have a doc who is willing to treat the side effects, its really very doable.. but if you dont have a doc who will treat all the sides, well then I wouldnt start tx until you find one who is,, its very important.. one never knows how its going to be for you.. but I can tell you that the anticipation of doing treatment was far worse than the treatment was... once it got going, I did fine and really began to be hopeful of reaching SVR,, and I did,, just had my 5 1/2 year post treatment pcr and Im still clear of virus... with a geno 1a and stage 3-4 with early cirrhosis.. but thinking about starting the treatment was far worse than the actual treatment ever was...Jackie Subject: HelloTo: Hepatitis_C_Central Date: Sunday, September 21, 2008, 7:09 AM First let me say, how thankful I am to have a found a group where I can express my fears and anxieties about what is happening to me. I am 54 years old and African-American, I was diagnosed with hcv in 2006. At the time I had no idea that it was there I didn't even know what hep c was until I researched it on internet, but now I am beginning to experience some symptoms. Such as a slight discomfort in my right side. At my age forgetfulness could be attributed to the change of life also, os I easily dismissed my forgetfulness. Anywho, my numbers are very low and I have been taking milk thistle, liver-rite and a few vitamin twice a day. My husband was diagnosed the same year and tried taking the interferon/ribavira n shot once a week and he became so sick and lost weight, I am now afraid to take the shot myself. Can anyone help I don't know what to do, I go back to see the GI next month. I am hoping for some kind of positive news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi : I think I am going to do the treatment, after the first of the year. I had a biopsy about a year ago and the doctor said, I had mild to moderate liver scarring and my numbers are very low. I just had some blood tests and the primary care physician said that it shows mild abnormal liver function, so I am waiting to see my GI to find out what is going on. My husband did not complete his meds, he took them for about 3 months and the doctor told him to stop because it wasnt working. They wanted him to take the daily meds but he refused. He had some rough times, which has truly scared the heebeejeebies out of me and I know there is a lower success rate for African Americans. One of the things I am worried about is not being able to go to work, I have a very demanding job I can't afford to be off from work for 6 months.And not being able to go to church, I love going so much and I sing in 2 choirs. After hearing about Cole being hospitalized, it has hit home about how this medicine can affect me. [Hepatitis_C_ Central] HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Sunday, September 21, 2008, 7:09 AM First let me say, how thankful I am to have a found a group where I can express my fears and anxieties about what is happening to me. I am 54 years old and African-American, I was diagnosed with hcv in 2006. At the time I had no idea that it was there I didn't even know what hep c was until I researched it on internet, but now I am beginning to experience some symptoms. Such as a slight discomfort in my right side. At my age forgetfulness could be attributed to the change of life also, os I easily dismissed my forgetfulness. Anywho, my numbers are very low and I have been taking milk thistle, liver-rite and a few vitamin twice a day. My husband was diagnosed the same year and tried taking the interferon/ribavira n shot once a week and he became so sick and lost weight, I am now afraid to take the shot myself. Can anyone help I don't know what to do, I go back to see the GI next month. I am hoping for some kind of positive news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi Vicki Well you have to remember that you are saving your life,, so you need to have the attitude that you will do whatever it takes in order to finish your tx, otherwise don't start because when you stop and start, the virus mutates and its much harder to kill it after it mutates.. Just remember that its NOT forever and you are trying to save your life honey.. and we will be here for you all the way! hugsJackie From: jusmemrsv <jusmemrsvyahoo (DOT) com>Subject: [Hepatitis_C_ Central] HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Sunday, September 21, 2008, 7:09 AM First let me say, how thankful I am to have a found a group where I can express my fears and anxieties about what is happening to me. I am 54 years old and African-American, I was diagnosed with hcv in 2006. At the time I had no idea that it was there I didn't even know what hep c was until I researched it on internet, but now I am beginning to experience some symptoms. Such as a slight discomfort in my right side. At my age forgetfulness could be attributed to the change of life also, os I easily dismissed my forgetfulness. Anywho, my numbers are very low and I have been taking milk thistle, liver-rite and a few vitamin twice a day. My husband was diagnosed the same year and tried taking the interferon/ribavira n shot once a week and he became so sick and lost weight, I am now afraid to take the shot myself. Can anyone help I don't know what to do, I go back to see the GI next month. I am hoping for some kind of positive news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Is there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------------------------------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi again Debbie and Amber don here in kansas. I hope no one minds if I just lurk and listen. Im a newbie to hep C [3 months ago found out]. Havent started tx yet. Kinda hoping there was a grp in salina kansas I could get with. Maybe find a good doctor that way. Havent done a biopsy yet, but have begun to change my diet. Anyways hi. Thanks for being here. love don Subject: Re: Re: HelloTo: Hepatitis_C_Central Date: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------------------------------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi amber, I dont think we have an actual folder for the acronyms but please feel free to ask any questions you have.. Here are some of the ones I can think of right this min,, TX= treatment Bx= biopsy Rx= prescription medication INF= Interferon Riba= Ribavirin LFT's= Liver function tests encephalophy occurs in those of us with hcv when we cannot break down proteins well enough. When we can break it down, it causes ammonia in our blood to rise and ammonia in our brain tissues causes the encephalopathy. Encephalopathy is a condition that as you know can be caused by many different problems but refers to confusion caused by swelling or toxins, lack of oxygen etc,, here is what wikipedia says about it: Hepatic encephalopathy (sometimes hepatoencephalopathy) is a potentially-reversible neuropsychiatric abnormality in the setting of liver failure, whether chronic (as in cirrhosis), or acutely. It can be diagnosed only after exclusion of other neurological, psychiatric, infectious, and metabolic etiologies. With severe liver impairment, toxic substances normally removed by the liver accumulate in the blood and impair the function of brain cells. If there is also portal hypertension, and subsequent bypassing of the liver filtration system of blood flowing in from the intestines, these toxic substances can travel directly to the brain, without being modified or purified. Signs can include impaired cognition, a flapping tremor (asterixis), and a decreased level of consciousness including coma (hepatic coma or coma hepaticum), cerebral edema, and, ultimately, death. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Don, you can read anything we post and ask questions too,, remember, you're a member here too!Jackie From: amberkesterson@ rocketmail. com <amberkesterson@ rocketmail. com>Subject: Re: [Hepatitis_C_ Central] Re: HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - [Hepatitis_C_ Central] Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------ --------- --------- ------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups. yahoo.com/ group/Hepatitis_ C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 ty Jackie love don From: amberkesterson@ rocketmail. com <amberkesterson@ rocketmail. com>Subject: Re: [Hepatitis_C_ Central] Re: HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - [Hepatitis_C_ Central] Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------ --------- --------- ------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups. yahoo.com/ group/Hepatitis_ C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 you're very welcome Don,,Jackie From: amberkesterson@ rocketmail. com <amberkesterson@ rocketmail. com>Subject: Re: [Hepatitis_C_ Central] Re: HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - [Hepatitis_C_ Central] Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------ --------- --------- ------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups. yahoo.com/ group/Hepatitis_ C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I do have a question. Does anyone know of a group centered in or around salina kansas, and is there a good doctor nr salina I could go to? love don From: amberkesterson@ rocketmail. com <amberkesterson@ rocketmail. com>Subject: Re: [Hepatitis_C_ Central] Re: HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - [Hepatitis_C_ Central] Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------ --------- --------- ------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups. yahoo.com/ group/Hepatitis_ C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi Amber, Static encephelapathy is not the same as hepatic encephelapathy. Just type in static encephelapathy children on your web search line and there is some information there. I am sure if you look there will be info you will find useful. Hope this helps. SuziQ > > Is there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. > Thanks! Amber > > > > > ------------------------------------ > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ > > Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I dont but maybe someone here might,, lets see what happensJackie From: amberkesterson@ rocketmail. com <amberkesterson@ rocketmail. com>Subject: Re: [Hepatitis_C_ Central] Re: HelloTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, September 26, 2008, 3:06 PMIs there a folder with all the acronyms that are used. Also can someone explain encephelapathy has to do with this? My children have a dx of static encephelapathy. Thanks! Amber - [Hepatitis_C_ Central] Re: Hello Wanted to say welcome to the new people. I am really sorry to hear about your diagnosis –but you have found your way here. This is a great place for information, answers, support, anything, everything. Just ask. The most important thing I learned at first was to breathe. I take a few times out each day to just breathe. Along with the other suggestions make sure to get enough sleep. Your liver needs sleep to heal. And what I seem to be working on all the time is getting the stress out of my life. What's important now is you and your health. Family, friends, etc. will follow but you need to take care of yourself first. Well welcome again. This is also a place to just hang out and see/feel you not alone. Oh and thanks to all who take so much time to answer our questions and do so much research (if your not a newbie are you an oldie?) Debbie ------------ --------- --------- ------ It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups. yahoo.com/ group/Hepatitis_ C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 hi sydney! welcome to the group, it is nice too meet you here. im carolyn age (almost) 48 and i live in ontario canada with my husband and our two pre-teen sons. what dvds do you especially like? we are looking forward to hearing about them! :*carolyn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 hi sydney! welcome to the group, it is nice too meet you here. im carolyn age (almost) 48 and i live in ontario canada with my husband and our two pre-teen sons. what dvds do you especially like? we are looking forward to hearing about them! :*carolyn. Quote Link to comment Share on other sites More sharing options...
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