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Sunday, April 11, 2010
Beth's Courage and Inspiration
Hi Betty, my name is Dove/Beth and I'd like to add to your efforts regarding Hep C Awareness. Thanks for doing what you are doing! :) I understand that you're looking for people's experiences with the treatment etc. I would like to participate with what help that I may give.
So here goes: To begin with -
I was diagnosed when I went to see a doctor for back pain and fatigue. I hadn't been to a doc in over twenty years except to give birth to my 2 kids, They are 26 and 17 now and no hep c thank the good lord. I did get yearly pap tests and mamo's because my mother had died at 41 with breast cancer, or perhaps I would have found out sooner. I had no symptoms as far as liver problems went or so I thought. I thought I was just getting older. I would go to work, come home make dinner and just fall into bed with the heating pad. I had no idea until when I finally at age 47 got insurance an had an actual complete physical that the "dragon" was working against me. Liver enzymes were elevated, More tests were ordered and all I wanted was for the constant tiredness and back pain would go away. The diagnosis just blew me away. At least I found out a reason. In truth it has actually saved my life to have found out about hep c because if I had not gone to the doc and kept drinking the way I was I would be probly way worse. Drinking is like pouring gas on a flame, little did I know that the virus thrived on my beer. My liver biopsy came back grade three and stage three which meant that I would be in cirrhosis soon.
I treated Geno 3a for six months and am most fortunate that I did as I am SVR today. I think it should be a routine test for everyone. A simple blood test. I've been thinking about the many risk factors. It is so important to be tested. Get check ups every year if possible. Not just for Hep C but routine stuff cuz it can save your life. I know many people don't like going to the doctor. Me included (They always find something wrong,lol) But to wait is way worse. The alternative is way way worse. We want to be here for our families. I love Janice and Friends. They are the best of best. Treatment is tough, but you are tougher. No one asks for this and no one deserves this. Today I am SVR after six months of tough duty but it has made me a stronger and more appreciative of all the small pleasures in life and a better person. Treatment definitely took me down a few nothches in the strength dept. I wouldn’t change a thing though. Today I live a healthy life. My back pain is slight ( I'm getting older) and I have much more energy. Its a new lease on life to be able to exercise. I never exercised till this ordeal happened. Now I am a firm believer in living right. So for me it was not just an excursion into the bizarre zone with the treatment (which it was) but a true life enlightening experience. I didn’t say that during treatment because it was day by day, but not until afterward. My advice to those in treatment: Keep on keeping on because you can do it! It is only temporary!!! It sure doesn’t feel temporary while you're doing it but it is. Yes it its tough duty and there may be days that you just don't want or can't.... but those are the days that you must be kind to yourself and allow yourself to just be. The rest will follow. You will feel better. Try not to put to much pressure on yourself. And always know you have friends at Janice and Friends (OUR LIFELINE!) Thanks for listening.
So here goes: To begin with -
I was diagnosed when I went to see a doctor for back pain and fatigue. I hadn't been to a doc in over twenty years except to give birth to my 2 kids, They are 26 and 17 now and no hep c thank the good lord. I did get yearly pap tests and mamo's because my mother had died at 41 with breast cancer, or perhaps I would have found out sooner. I had no symptoms as far as liver problems went or so I thought. I thought I was just getting older. I would go to work, come home make dinner and just fall into bed with the heating pad. I had no idea until when I finally at age 47 got insurance an had an actual complete physical that the "dragon" was working against me. Liver enzymes were elevated, More tests were ordered and all I wanted was for the constant tiredness and back pain would go away. The diagnosis just blew me away. At least I found out a reason. In truth it has actually saved my life to have found out about hep c because if I had not gone to the doc and kept drinking the way I was I would be probly way worse. Drinking is like pouring gas on a flame, little did I know that the virus thrived on my beer. My liver biopsy came back grade three and stage three which meant that I would be in cirrhosis soon.
I treated Geno 3a for six months and am most fortunate that I did as I am SVR today. I think it should be a routine test for everyone. A simple blood test. I've been thinking about the many risk factors. It is so important to be tested. Get check ups every year if possible. Not just for Hep C but routine stuff cuz it can save your life. I know many people don't like going to the doctor. Me included (They always find something wrong,lol) But to wait is way worse. The alternative is way way worse. We want to be here for our families. I love Janice and Friends. They are the best of best. Treatment is tough, but you are tougher. No one asks for this and no one deserves this. Today I am SVR after six months of tough duty but it has made me a stronger and more appreciative of all the small pleasures in life and a better person. Treatment definitely took me down a few nothches in the strength dept. I wouldn’t change a thing though. Today I live a healthy life. My back pain is slight ( I'm getting older) and I have much more energy. Its a new lease on life to be able to exercise. I never exercised till this ordeal happened. Now I am a firm believer in living right. So for me it was not just an excursion into the bizarre zone with the treatment (which it was) but a true life enlightening experience. I didn’t say that during treatment because it was day by day, but not until afterward. My advice to those in treatment: Keep on keeping on because you can do it! It is only temporary!!! It sure doesn’t feel temporary while you're doing it but it is. Yes it its tough duty and there may be days that you just don't want or can't.... but those are the days that you must be kind to yourself and allow yourself to just be. The rest will follow. You will feel better. Try not to put to much pressure on yourself. And always know you have friends at Janice and Friends (OUR LIFELINE!) Thanks for listening.
Saturday, April 10, 2010
Diet and Hepatitis C Written by Jocelyn Rodriguez for
NATAP National AIDS Treatment Advocacy Project
NATAP National AIDS Treatment Advocacy Project
I Have Cirrhosis. Should I Eat A Special Diet? Written by Charles Daniel, former About.com Guide
Updated: July 14, 2009
Updated: July 14, 2009
Combo Survival Guide all information compiled by Trishamn, Lacey & Freyja
This information got me through all aspects of Side Effects from Hep C treatment
This information got me through all aspects of Side Effects from Hep C treatment
Shore to Shore for a Cure...
I'm fourty two years old and have HCV. I found out about four years ago……………
When I first found out I was HCV positive, I was devastated. I was sure that my life was going to end the next day and it terrified me not knowing what was happening. My original diagnosis came from a nurse practitioner and to say the least, she had no bed side manner. She proceeded to tell me I had Hepatitis B and that I could no longer be seen at that office. (This by the way was a misdiagnoses). So off I went, tail tucked between my legs, to see the specialist. If a health care provider could treat you like this how on earth was the rest of society going to treat you? Was a thought that I couldn't get out of my head. Thank god I did find a specialist who assured me I didn't have to worry about pushing daisies yet and the illness in fact was not a casually spread one.
Hepatitis can be a very manageable disease and yes there is treatment for it. My Dr assured me that you can live a very healthy life if you take care of yourself. There are support groups on the net that can lead you to resources and organizations that can help with medication and most off all education and awareness.
I have been searching and searching for information about this illness. The more I read the less I know. I dont understand why this disease isnt being taken as seriously as some of the other diseases. Maybe we just are not being loud enough to be heard. So for others like me who want everyone to here our voice, I am attempting to hike from NJ to CA. My progress will be very slow. But I will do anything I can to help spread the word. I cannot set up fund raisers and such but if anyone is out there who would like to use my effort to promote their drives, I will be posting on Facebook my daily progress. I'm going to survive this hike as natural as possible, and I don't mind catching rain, but a fresh bottle of water along the way and some high fives with other HCV sufferers would mean the world to be. Please follow me on my journey. http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455
I can sit home and feel sorry for my self because I have this illness or I can go out there a spread awareness . At this time do not qualify for assistance with the medication. So I have nothing but time on my hands. To much time to just sit here, and hopefully enough to receive treatment.
So this begins my journey. Shore to Shore for a cure...
I'm with you,
Betty Vega - keep us all posted
Just an update..So far I have a 190 plus fans on the HepC awareness page. You can view it here..http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455 I need all the help I can get..It is not a donation page..I do need your help voting for me on the prilosec sponsorship page. Im only asking for a little support and a place to rest my head along the way.
If any one can help coordinated things with other walks or fund raiser along the way please let me know. I WOULD LIKE TO MAP THE TRIP WITH THESE THINGS IN MIND.
Thanks again a reply now and would make my day..hint hint
Im' leaving on the 13th for my hike across The U.S. to tell as many as I can to get tested. Some of you know what I'm talking about and some of you might not. I would put the link to my page up but I have been blocked from another forum and think that might be why..But any way I hope to see some of you along the way..I am going to be in DC for the rally on the 19th. Then I'm heading south. I will be traveling down the east coast across the south and up to Cali..See you around
Theresa
You Go Girl...Betty
When I first found out I was HCV positive, I was devastated. I was sure that my life was going to end the next day and it terrified me not knowing what was happening. My original diagnosis came from a nurse practitioner and to say the least, she had no bed side manner. She proceeded to tell me I had Hepatitis B and that I could no longer be seen at that office. (This by the way was a misdiagnoses). So off I went, tail tucked between my legs, to see the specialist. If a health care provider could treat you like this how on earth was the rest of society going to treat you? Was a thought that I couldn't get out of my head. Thank god I did find a specialist who assured me I didn't have to worry about pushing daisies yet and the illness in fact was not a casually spread one.
Hepatitis can be a very manageable disease and yes there is treatment for it. My Dr assured me that you can live a very healthy life if you take care of yourself. There are support groups on the net that can lead you to resources and organizations that can help with medication and most off all education and awareness.
I have been searching and searching for information about this illness. The more I read the less I know. I dont understand why this disease isnt being taken as seriously as some of the other diseases. Maybe we just are not being loud enough to be heard. So for others like me who want everyone to here our voice, I am attempting to hike from NJ to CA. My progress will be very slow. But I will do anything I can to help spread the word. I cannot set up fund raisers and such but if anyone is out there who would like to use my effort to promote their drives, I will be posting on Facebook my daily progress. I'm going to survive this hike as natural as possible, and I don't mind catching rain, but a fresh bottle of water along the way and some high fives with other HCV sufferers would mean the world to be. Please follow me on my journey. http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455
I can sit home and feel sorry for my self because I have this illness or I can go out there a spread awareness . At this time do not qualify for assistance with the medication. So I have nothing but time on my hands. To much time to just sit here, and hopefully enough to receive treatment.
So this begins my journey. Shore to Shore for a cure...
I'm with you,
Betty Vega - keep us all posted
Just an update..So far I have a 190 plus fans on the HepC awareness page. You can view it here..http://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455 I need all the help I can get..It is not a donation page..I do need your help voting for me on the prilosec sponsorship page. Im only asking for a little support and a place to rest my head along the way.
If any one can help coordinated things with other walks or fund raiser along the way please let me know. I WOULD LIKE TO MAP THE TRIP WITH THESE THINGS IN MIND.
Thanks again a reply now and would make my day..hint hint
Im' leaving on the 13th for my hike across The U.S. to tell as many as I can to get tested. Some of you know what I'm talking about and some of you might not. I would put the link to my page up but I have been blocked from another forum and think that might be why..But any way I hope to see some of you along the way..I am going to be in DC for the rally on the 19th. Then I'm heading south. I will be traveling down the east coast across the south and up to Cali..See you around
Theresa
You Go Girl...Betty
Albina's Hep C Story
My name is Albina,I am 34 years, I have never done drugs, never had a blood transfusion, never shared needles. Just a difficult labour 8 years ago, with forceps, some dental procedures during these years, but no blood transfusion.
I was diagnosed on September 2009. Just by coincidence, routine test, although I had a long time feeling tired and almost the first to catch the flu. Almost every month just like menstruating.
When I heard about the virus I remained completely indifferent, I didn't know anything about it.
Now I know a lot of things.I am genotype 1; low viral load, 256.000, fibrosis test 0.20.
I thank god, and I hope to continue doing well.
Yes I am tired, Yes I still catch the flu, but at least my lab tests are good.
I have not done the biopsy, and I do not know when I will have one. I had an US and CT Scan because of a hemangioma on my liver to check for tumor. I am having another US on May, since doctor wants to keep me under surveillance. But I am happy! I have two kids, who are negative. My husband who is negative. They love me.
I have a family that loves me, parents, brother ,sister, and I feel happy.
The virus is not gonna beat me! I have promised in silence to my family and to myself!
I was diagnosed on September 2009. Just by coincidence, routine test, although I had a long time feeling tired and almost the first to catch the flu. Almost every month just like menstruating.
When I heard about the virus I remained completely indifferent, I didn't know anything about it.
Now I know a lot of things.I am genotype 1; low viral load, 256.000, fibrosis test 0.20.
I thank god, and I hope to continue doing well.
Yes I am tired, Yes I still catch the flu, but at least my lab tests are good.
I have not done the biopsy, and I do not know when I will have one. I had an US and CT Scan because of a hemangioma on my liver to check for tumor. I am having another US on May, since doctor wants to keep me under surveillance. But I am happy! I have two kids, who are negative. My husband who is negative. They love me.
I have a family that loves me, parents, brother ,sister, and I feel happy.
The virus is not gonna beat me! I have promised in silence to my family and to myself!
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