Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 HI DEBBIE AND WELCOME TO THE GROUP, THINGS ARE ALITTLE SLOW IN HERE TODAY ,BUT HANG AROUND, EVERYONE WILL BE THRILLED TO WELCOME YOU. FIRST DO YOU HAVE A GASTO.? IF YOU DO YOU NEED TO INSIST ON A BYOPSY,IT WILL TELL YOU WEATHER OR NOT YOU HAVE CIROHSIS FROM THE HEP.,HAVE YOU HAD BLLOD WORK DONE?? WHAT WAS YOUR LIVER NUMBERS? MY HUSBAND IS 48 YRS. OLS AND HAS END STAGE LIVER DISEASE FROM HIS HEP. C.WE DONT KNOW HOW HE GOT IT, BUT IT DONE ITS DAMAGE BEFORE WE EVER KNEW ABOUT IT.SO PLEASE GET THAT BYOPSY, ARE THEY WANTING TO TREAT THE HEP. WHAT ARE THEY DOING??? YOU ARE GONNA HAVE TO STAY ON YOUR DR. TO GET THE RESULTS YOU WANT. YOU WILL BE IN MY THOUGHTS AND PRAYERS DEBBIE, PLEASE CALL THE OFFICE AND REQUEST THE BYOPSY ,MUCH LOVE BARBY > > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 oops sorry about the caps lol i wasnt yellin, just forget they were on,barby--- In livercirrhosissupport , " drgonflyblue " wrote: > > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 /debbie, I believe that this is the most caring group that I have ever had the prividledge of being in........everyone truly cares.......Welcome. Lots of hugs and kisses to everyone. Lyncia Subject: New to group... To: livercirrhosissupport Date: Tuesday, March 10, 2009, 7:02 AM Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi Debbie, Welcome to the group. I'm Penny. I have Hepaitis C and had a liver transplant on January 6, 2008. I never did conventional treatment before my transplant, and never wanted to do it. The transplant team said I would have to do the treatment after my transplant, and that is what I am doing now. I was scared to death of the side effects, and that is why I never did treatment. The side effects for me are little to none...just fatigue, low red blood cell counts, slight depression, and thyroid out of whack a little bit. The Hep C virus has been undetectable since 6 days after starting treatment. When I first got sick in 1983 with an acute case that felt like a flu I couldn't shake off, the doctors thought I had Hepatitis B because they didn't know about Hepatitis C yet. In 1991, they found out it was Hepatitic C. You should get a liver biopsy so you can find out what shape your liver is in. Penny > > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Welcome Debbie! Ditto what Lyncia said. I was caregiver to my mom until her death in Feb 08. These peeps here gave me tons of information, loved me and helped me care for my mom. Hang in there!! Hugs & Prayers! Pamela From: drgonflyblue <pita54meyahoo (DOT) com> Subject: New to group... To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, March 10, 2009, 7:02 AM Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Welcome Debbie - I am 65, was diagnosed with cirrhosis about 7 years ago I think. I had a second biopsy 2 years ago and the damage to my liver is 4 out of 4. I have other health problems too. I am not a candidate for transplant here in Arizona where I live because of my age and other medical problems. When I was first diagnosed, I was told I had 2 to 3 years to live. Needless to say, that wasn't fact. Now I say I have 3 years to live, said the same last year, will probably say the same next year. That gives me long enough in the future to live my life in the present but also a reminder that it may not be too long, so I should lead it right. The cause of my cirrhosis is unknown, so I don't know too much about hep c or b. But anytime someone is told they have either, they should find a doctor who specializes in liver and/or transplant issues. My pcp told me it would be dangerous to leave for a one month trip while my diagnosis was being made. They just don't have the experience to make statements like that, but they will make them. I think he was more influenced by the fact that one of his office workers had been diagnosed with cirrhosis shortly before and when they did the transplant, they found she was more advanced than her outward physical condition and the biopsy had shown. So, when he is presented with another liver patient, he rather panicked. As everybody has said, this is great group, for the most part very upbeat, but serious about helping ourselves and each other to live our fullest with this disease. Sometimes it is nice to just have a place where we can vent our frustrations too. Jan H > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out > last week that I also have Hep B. I have never had a liver biopsy ( it has > never been recommended to me ) and have no idea whether I have cirrhosis or > not. I have almost constant liver pain and had an incident recently where my > spleen was enlarged and hurt.My kidneys have started hurting as well. I > suffer the most from FATIGUE and digestion problems. I've been reading the > posts about endoscopies. I had 2 of them while wide awake. I was given > Versed but have a high tolerance to any kind of sedative and it didn't phase > me. Both times were unpleasant but not at all painful and were over in a > matter of about 7 min. The last endoscope I had I was put under with General > Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I > have to say I would much rather have been awake as I had been the first 2 > times. I tried telling them to just do it with me awake and I don't think > they believed that I had been awake during the first 2. The first 2 times > were done by a surgeon and the last one was done by a gastrointerologist. > Anyway, I hope I've come to the right group but not sure seeing as how I > don't know if I have cirrhosis or not. I've been in Hep C groups but felt > out of place as I have not done nor will ever do conventional tx.~~~Debbie > > > -- Jan H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi i like that name ...dragonfly....nice to meet you...my husband had esld too. we are currently finalizing the requirement in order for insurance to give there final approval for the transplant. i have all the last little tidbits gathered as soon as we get the dental clearance we will be placed on the list. My husband doesn't communicate with the group but he respects my doing so and he also bragged one day about the group. i feel like i have friends here. love sandra ________________________________ To: livercirrhosissupport Sent: Tuesday, March 10, 2009 8:02:52 AM Subject: New to group... Hi, I'm 55 and was diagnosed 2 yrs.. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi, Debbie, and welcome to our group. My name is Bobby. I am 46 and have end stage liver disease from alcoholism. I am approaching 2 and a half years sober on the 15th. I am trying to push to get a liver transplant, but my MELD hovers around 7-8-9, etc. I hope you are able to get good care from a competent hepatologist, who will take a biopsy when it is appropriate, as this seems to be a often repeated complaint with newcomers to this group, and was in fact my personal experience. I unknowingly trusted the care of my liver to my PCP and she botched the beginning of my disease badly. I had to educate myself, ( not by choice but necessity), and learned some hard lessons. I know that you have come to the right place, and hope that you find this group as fulfilling as I have. We have many files for you to view, including a mini course from NC state on liver diseases. We have a nice photo album, and a database you can add your self to if you want. It helps us keep track of each other's progress. Love, and welcome to you and any and all other new comers, Bobby, moderator. long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Tuesday, March 10, 2009 6:02:52 AM Subject: New to group... Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Thank you Bobby and congratulations on your sobriety. I wish I could be just 1/10 as brave as many of you are!~~~Debbie > > Hi, Debbie, and welcome to our group. My name is Bobby. I am 46 and have end stage liver disease from alcoholism. I am approaching 2 and a half years sober on the 15th. I am trying to push to get a liver transplant, but my MELD hovers around 7-8-9, etc. I hope you are able to get good care from a competent hepatologist, who will take a biopsy when it is appropriate, as this seems to be a often repeated complaint with newcomers to this group, and was in fact my personal experience. I unknowingly trusted the care of my liver to my PCP and she botched the beginning of my disease badly. I had to educate myself, ( not by choice but necessity), and learned some hard lessons. I know that you have come to the right place, and hope that you find this group as fulfilling as I have. We have many files for you to view, including a mini course from NC state on liver diseases. We have a nice photo album, and a database you can add your self to if you want. It helps us > keep track of each other's progress. Love, and welcome to you and any and all other new comers, Bobby, moderator. > > long life, old age, everything good-Apache prayer > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Tuesday, March 10, 2009 6:02:52 AM > Subject: New to group... > > > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think > they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 HUH?? I am a big ol chicken! But thank you just the same. Love, Bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Thursday, March 12, 2009 7:21:33 AM Subject: Re: New to group... Thank you Bobby and congratulations on your sobriety. I wish I could be just 1/10 as brave as many of you are!~~~Debbie- -- In livercirrhosissuppo rtyahoogroups (DOT) com, Bob Aragon <robwalkingeagle@ ...> wrote: > > Hi, Debbie, and welcome to our group. My name is Bobby. I am 46 and have end stage liver disease from alcoholism. I am approaching 2 and a half years sober on the 15th. I am trying to push to get a liver transplant, but my MELD hovers around 7-8-9, etc. I hope you are able to get good care from a competent hepatologist, who will take a biopsy when it is appropriate, as this seems to be a often repeated complaint with newcomers to this group, and was in fact my personal experience. I unknowingly trusted the care of my liver to my PCP and she botched the beginning of my disease badly. I had to educate myself, ( not by choice but necessity), and learned some hard lessons. I know that you have come to the right place, and hope that you find this group as fulfilling as I have. We have many files for you to view, including a mini course from NC state on liver diseases. We have a nice photo album, and a database you can add your self to if you want. It helps us > keep track of each other's progress. Love, and welcome to you and any and all other new comers, Bobby, moderator. > > long life, old age, everything good-Apache prayer > > > > > ____________ _________ _________ __ > From: drgonflyblue <pita54me@.. .> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, March 10, 2009 6:02:52 AM > Subject: New to group... > > > Hi, I'm 55 and was diagnosed 2 yrs. ago with Hep C. I just found out last week that I also have Hep B. I have never had a liver biopsy ( it has never been recommended to me ) and have no idea whether I have cirrhosis or not. I have almost constant liver pain and had an incident recently where my spleen was enlarged and hurt.My kidneys have started hurting as well. I suffer the most from FATIGUE and digestion problems. I've been reading the posts about endoscopies. I had 2 of them while wide awake. I was given Versed but have a high tolerance to any kind of sedative and it didn't phase me. Both times were unpleasant but not at all painful and were over in a matter of about 7 min. The last endoscope I had I was put under with General Anesthesia. I was put on monitors, had breathing treatments, IV's etc. and I have to say I would much rather have been awake as I had been the first 2 times. I tried telling them to just do it with me awake and I don't think > they believed that I had been awake during the first 2. The first 2 times were done by a surgeon and the last one was done by a gastrointerologist. Anyway, I hope I've come to the right group but not sure seeing as how I don't know if I have cirrhosis or not. I've been in Hep C groups but felt out of place as I have not done nor will ever do conventional tx.~~~Debbie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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