Guest guest Posted January 13, 1999 Report Share Posted January 13, 1999 Hi Trinity, Welcome to the list. I'm a 51 year old mom, who was diagnosed just over two years ago with Hepatitis C. I gave blood for a knee operation and while I was recuperating in the hospital I got a letter from the Red Cross, informing me that I had tested positive for Hepatisi C. It took me a year before I got help because I didn't think it was that big a thing. Wrong. I know how you must be feeling. It's frightening when you're not sure what's going on. There are so many questions. There are great websites on Hepatitis C, including the Hepatitis Foundation, Internation, and the American Liver Foundation. They will send you info if you ask. The American Liver Foundation sends me updates on research or general info on Hep C. Do you think your specialist (gastroenterologist) will want to start you on treatment? Do you know how long you've had Hep C. I got it 20 years ago from a blood transfusion, before they had tests for Hep C. I was on interferon for about 9 months, and now I'm in remission. Check out some of the web sites, there are patient websites, and medical websties, support websites. If you have any specific questions or just want to talk, I'll be here. Good luck with your doctor appointment. Let me know how it goes. Marie At 10:06 PM 1/13/99 -0500, you wrote: >From: Trinity <phoenix@...> > >Hello. > > i was diagnosed positive today with Hep C... i'm a 47 yr old >single mom of 4 young children. the end of the month, i have an >appointment with a specialist... am ignorant of the disease, except how i >got it. > > thanks for having this list. > > Trinity > > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 1999 Report Share Posted January 13, 1999 Thanks for the info, Marie... i got the Hep C from a love sometime between May-July 98-- so am very early since exposure. will be checking out the web sites tomorrow and Friday... my head is spinning, although i had some warning from him... and all the info i've found since i began looking into it in July says rarely from sex... although i usually enjoy being " different " this is one time i would prefer to be ordinary... but thanks for your kind words... i'm doing my best to get educated somewhat before my appt the last week in January... Trinity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Hi again Trinity, Yes, it's rare to get Hep C through sex. I've been married 30 years, 20 of which I've had the Hep C. My husband and I have a pretty active sex life and he's been tested in the last year as negative. It's good you found this disease early. Usually there aren't any real symptoms for over 20 year. I still don't have any. They say depression and fatigue could be symptoms, but they only show up after you've had it a long time. So many people have it and never know about it until they've had it 25 or 30 years, when they start having symptoms, then it's not as easy to treat it. Happy web surfing, Marie At 11:05 PM 1/13/99 -0500, you wrote: >From: Trinity <phoenix@...> > >Thanks for the info, Marie... i got the Hep C from a love sometime between >May-July 98-- so am very early since exposure. will be checking out the >web sites tomorrow and Friday... my head is spinning, although i had some >warning from him... and all the info i've found since i began looking into >it in July says rarely from sex... although i usually enjoy being > " different " this is one time i would prefer to be ordinary... but thanks >for your kind words... i'm doing my best to get educated somewhat before my >appt the last week in January... > > Trinity > > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 --Trinity <phoenix@...> wrote: am ignorant of the disease, except how i > got it. > > Trinity-- I was diagnosed in Dec. of '97 with hep c--had the biopsy, etc. Have had the combo therapy for app. 6 months, but had to discontinue due to insurance problems. Hope to start again soon. I got mine from being a hippie in the '60's, and using needles--we had no idea what would happen. Ironically, now I have to treat a disease that I got from using needles by using needles again--- The hep c has caused me some major problems, but from what I understand, mine are pretty rare. Leave it to me! My cornea in my left eye has been melting away, and has required surgery, hourly application of drops, and twice-weekly visits to the dr. They're doing a case study on it, because it is such a rare condition, and the drs. are flying by the seat of their pants trying to treat it. If you ever want to talk, please feel free to e-mail me anytime. I'm on ICQ and pager, too. I'm home almost all the time, because I'm disabled, so I'm on the 'puter almost every day. I'm 46, have 3 kids, and 3 grandkids---stuff in common for us. Later-- Kathi == Visit my webpage at: http://members.tripod.com/~rdhd45vlcek/index.html and my support group at: http://clubs./clubs/parentingtroubledteens ICQ 22539187 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Hi Kathy, I was on the interferon for 9 months and had to get off because it was causing damage to my thyroid. It's one of those 1% of patients side effects. I had the usual side effects, but they got better after the first few months. I had to start taking thyroid medicine, because my throid was damaged. I don't think I'd want to get on the combination treatment. Besides being so expensive (even after insurance), I hear the side effects are worse. I've heard of the cornea problem. Good luck with your eye treatment. I have more tests (liver enzyme tests, and viral load tests) the beginning of March. Hopefully, I'll still be in remission. I didn't have a liver biopsy. The doctor didn't think it necessary, and my liver wasn't inflammed. Well, glad to have someone around to talk to. Take care, Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 >From: Kathi <rdhd45vlcek@...> >Trinity-- >I was diagnosed in Dec. of '97 with hep c--had the biopsy, etc. Have >had the combo therapy for app. 6 months, but had to discontinue due to >insurance problems. Hope to start again soon. I got mine from being >a hippie in the '60's, and using needles--we had no idea what would >happen. Kathy, and others, thanks for your stories and your information... i'm still in shock that i even have it... all the literature says sexual transmission is rare... well, damned if i didn't beat the " system! " ... today, as my work day ended, i could feel the weepies coming on... yesterday, my head was spinning, and i slipped into intellectual mode... today am more " scared out of my wits " ... have had the queasies lately, with a touch of diarrhea, so am attributing it to that... but am smack in the middle of menopause, so who knows??? spent the day on phone with pharmacist to inquire about whether to remain on my medications (for depression-- along time battle), the Meridia for weight loss, and the hormones for menopause... and have discovered the joy of No Information... LOL but the specialist will be able to inform me in 2 weeks... thank you all... i appreciate all the support... Feisty by Nature, HCV by Diagnosis. Trinity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Welcome to the club Shelia. I can relate. I am only 23 and I have no energy. I am always tired and I have so much weight to get off of me. I am on synthroid and that helped me stop gaining weight but I still have the other symptoms. Tyra who is the founder of this list posted passages from a book called the Thyroid Solution and unfortunately the symptoms don't go away even if your levels are regulated which my doctor did not tell me. I think you will find this club useful. Hope to chat and get to know you and just know that you aren't alone. <br>Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Hi shelia<br>I too am from Michigan, which town do you live in?<br>I am from Saginaw, I also just found out about my thyroid in March, it is a hard disease to get under control I have been on medication since April, and am just now starting to feel a little better I have my good days and my bad days.<br>Sorry to hear about your other illiness, how long hae you had Lupus? I don't know much about that <br>disease. <br>I too have had bouts of depression, fatigue, and just feeling sick, for me I had every symptom you could possibly have for hypothyroidism, I had to ask my doctors to test me and when my results came back they were surprised to see me walking around they said my levels were over 100! I have felt bad for several years but never had I ever thought I had this disease, I gained 30 lbs in a few months and just now am beginning to take it off, I have recently lost 12 lbs.<br>I wish you the best of luck and I realy don;'t know of any other web sites for hypothyroidism, and your right at least you don;t have little ones to chase around I have a 7 year old and a 1 year old, but I hear teenagers are alot of work too!!!<br>feel free to email me if you want to chat sometime ......sunflower_413@....<br>I do know there is a support group somewhere in Detroit if your intrested let me know I could find the information for you..<br>good luck..<br>sunflower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Hi Sheila,<br><br>Welcome to the wacky world of thyroid disease!<br><br>Were you diagnosed with hypothyroidism, or Hashimoto's Thyroiditis? I wondered about Hashimoto's, after you said you also have Lupus. Both are autoimmune diseases...and if you have one autoimmune disease, you're then prone to developing others. The only way to diagnose Hashi's is by having an antibodies test done...so if that test wasn't done, you might want to suggest that it BE done!<br><br>I belong to a couple of other thyroid forums besides this one; both are on Delphi, and both have a LOT of useful information. One is Woodstock's Thyroid Disease Forum (where I'm a chat moderator) and the other is the About.com Thyroid Forum. On the Webpage of WTDF, there's a link to a thyroid disease support group in Michigan; I think it meets in the Detroit area. From what I've read about it at WTDF, it's grown tremendously...and it's only a few months old. I believe my friend there says there's about 75 members, now.<br><br>IMO, you are doing the right thing, by gathering info on TD over the 'net. I wish I'd done so, sooner! ~_~ Knowledge is POWER!<br><br>To all: If you're interested, I'm building a website on my thyroid disease...visit it at: <a href=http://members.delphi.com/jwthompson target=new>http://members.delphi.com/jwthompson</a> ...and sign my guestbook, so I'll know you came calling!<br><br>(((((hugs))))) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi Irene ..welcome to the group~ So, how did you find out you had hepatitis? what was it that led you to be checked out? How is your health otherwise? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi Irene ..welcome to the group~ So, how did you find out you had hepatitis? what was it that led you to be checked out? How is your health otherwise? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi, my name is Irene. People call me Pebbles. I have Stage 2 liver disease from Hep C. I have had Hep C for around 30 years now, I suppose as I look back at my history. The specialist, is it a hepatologist, said my liver biopsy came out as Stage 2 with pre- cirrhosis? This scares me greatly! I am 45 years old and have lost my family in a car accident; my only sibling died last year of a massive heart attack at age 45. I feel so alone and am hoping that this group will be a good support system for me. Again, my name is Irene; if you'd like to call me Pebbles, that's my nickname from birth because I wear my blonde hair up in a pebbles pony tail! A little bit about me. I live now in California, just moved here from Long Island, NY. I've got to find the right specialists to help me. Can anyone tell me who that would be. Not a general practioner, right? Thank you very much for allowing me on site. I look foward to some help you might provide me. I also would like to meet the woman / man who started this group, as I think it is fantastic that is it here for us folks who are suffering from this mind-blowing virus! Love, Pebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi, my name is Irene. People call me Pebbles. I have Stage 2 liver disease from Hep C. I have had Hep C for around 30 years now, I suppose as I look back at my history. The specialist, is it a hepatologist, said my liver biopsy came out as Stage 2 with pre- cirrhosis? This scares me greatly! I am 45 years old and have lost my family in a car accident; my only sibling died last year of a massive heart attack at age 45. I feel so alone and am hoping that this group will be a good support system for me. Again, my name is Irene; if you'd like to call me Pebbles, that's my nickname from birth because I wear my blonde hair up in a pebbles pony tail! A little bit about me. I live now in California, just moved here from Long Island, NY. I've got to find the right specialists to help me. Can anyone tell me who that would be. Not a general practioner, right? Thank you very much for allowing me on site. I look foward to some help you might provide me. I also would like to meet the woman / man who started this group, as I think it is fantastic that is it here for us folks who are suffering from this mind-blowing virus! Love, Pebs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hello April. I was diagnosed in May 1995 by a very reputable Recovery Addiction physician. I knew something was wrong--I was always sick to my stomach. People would tell me my face looked yellow and gray. I was sooo sick in the morning. I thought I was pregnant, but there was no way I could be. I keep celibate every since I lost a love. I never thought to be checked out. When I was 5150'd (a legal 72 hour hold by the police in a psych hospital!) and sent to Sister Recovery Center in Orange, Calif., they automatically come take your blood the very next morning when you don't even want to be there because you know you are going to get very ill (from kicking dope). When I left in 1995, I lived in a sober home and was told to go to the Sister's Center right away; it was terribly important. And so I found out! April, in those days from 1994 until today, I do feel like myself. Especially the earlier years. These days are not so bad, I must say. Sometimes I FORGET I have Hep C but I am always reminded because I wear a MED ALERT bracelet. As I posted earlier, my liver enzymes in those days were in the 500s. Today they are in the 30's. I live a very clean, clean life. I just figure Hep C is a REAL LIVE wreakage of my past which ALWAYS reminds me: 1) not to drink; 2) not to drug; 3) be extremely careful with mate; 4) and look at my liver belly!!! Thanks for writing. If you'd like, tell me a bit about yourself. You have such an adorable screen name. I love cupcakes, especially with sprinkles on top! Love ya, Pebbles Aprilcupcake@... wrote: Hi Irene ..welcome to the group~ So, how did you find out you had hepatitis? what was it that led you to be checked out? How is your health otherwise? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hello April. I was diagnosed in May 1995 by a very reputable Recovery Addiction physician. I knew something was wrong--I was always sick to my stomach. People would tell me my face looked yellow and gray. I was sooo sick in the morning. I thought I was pregnant, but there was no way I could be. I keep celibate every since I lost a love. I never thought to be checked out. When I was 5150'd (a legal 72 hour hold by the police in a psych hospital!) and sent to Sister Recovery Center in Orange, Calif., they automatically come take your blood the very next morning when you don't even want to be there because you know you are going to get very ill (from kicking dope). When I left in 1995, I lived in a sober home and was told to go to the Sister's Center right away; it was terribly important. And so I found out! April, in those days from 1994 until today, I do feel like myself. Especially the earlier years. These days are not so bad, I must say. Sometimes I FORGET I have Hep C but I am always reminded because I wear a MED ALERT bracelet. As I posted earlier, my liver enzymes in those days were in the 500s. Today they are in the 30's. I live a very clean, clean life. I just figure Hep C is a REAL LIVE wreakage of my past which ALWAYS reminds me: 1) not to drink; 2) not to drug; 3) be extremely careful with mate; 4) and look at my liver belly!!! Thanks for writing. If you'd like, tell me a bit about yourself. You have such an adorable screen name. I love cupcakes, especially with sprinkles on top! Love ya, Pebbles Aprilcupcake@... wrote: Hi Irene ..welcome to the group~ So, how did you find out you had hepatitis? what was it that led you to be checked out? How is your health otherwise? Quote Link to comment Share on other sites More sharing options...
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