Hepatitis Community

Yeah- I posted looking for young people too! I am 29 and have been hep C positive since I was born from a blood transfusion. I found out my sophmore year in college 1998. It is a hard thing to tell people. it is something I do not tell very many. Reason being is that people truly do not understand it, it is hard when you want to go out drinking with your friends and I can't drink. But that is the way it is and I can't change it. I understand how u feel. I know it is hard. I know where ur at with life right now and it is hard... beyond hard...Good luck to you in your remission. I have tried the medicie 2 times with no luck

I'm curious. I'm 52 and I've had HCV for at least 23yrs, if not all my life. I found out 8 yrs ago of my infection...I've had two biopsy's over the course of the first 3yrs(of my knowledge) that showed no progression...very little inflamation and I'm not even on the charts for a stage... I chose twice not to treat.

You are so young in the course of this disease... Twice treated and no results at the age of 29. May I ask what your biopsy results were? What treatments(tx) did you endure? Have you tried any alternative medicine or adjusting your diet? A daily exercise as simple as walking can make such a big difference in your energy level.

I wish you the best,

peanut

No there is no easy way to tell people how you feel. I am a nurse and contracted hep-c from a patient. You think people in the medical field would understand what you are going threw. Not! Just as long as it is not them. I am still open to my patient as well, I have hep-c now and forever. No changing that. So hold your head up texasaggie2004. Everything will be ok. I tell myself the same thing every day when I feel bad. TC

Hi Peanut...sorry have not been on in a while I have been out of town

My liver biopsys (I have had 3) have all come back "normal" with no or very minimal disease. I did both interferon and co-pegusus and then(in 2001) and then a year later I did interferon and riboviran, but Geno type 1A which is hardest to treat. I have not tried any alternative meds, kinda scared to!! I use to exercise a lot. Yet that has changed with life, job, feeling crappy!! I need to make myself walk daily. I have put on a lot of weight too, which has been bad. After the 2nd treatment, it knocked out my thyroid. So now I am trying to manage that, get on the right dose of meds to get it going again. I just went to my hepatologist and he put me on the diet they ise with people who have NASH, no carb diet. Having a hard time with it so I am trying to slowly ween carbs out of my diet. So I am trying to do that. My labs came back the same as they always do, slightly elevated. I am just waiting for the next one. It is scary though, we really do not know what the long term effects of this medication is. But it is the only option right now. I have been having a hard time with it lately. I would have thought it would have gotten easier by the year, but it has not, now I am faced with a different set of challanges.... I just got married.... trying to balance life, husband and now whether to have a baby..... I am scared of that

Have u had luck with alternative and diet? My doc has turned his nose up to milk thistle... Any thoughts you can give would be great.

I have tried a few alternative ways over the years... from acupuncture, herbals and supplements; to what has come down to just plain eating healthy and staying physically and mentally active. I have heard indirectly of pp that have benefited greatly from milk thistle. Never take anything without first informing your doc and consulting with a specialist. Herbs are drugs and can be harmful when taken with prescription drugs.

My diet consist of mostly fresh veggies and fruits. I eat nuts and lean chicken and pork to get my protein. Yogurt and varies cheeses and crackers are staples. I try to stay away from red meats and anything fried. HCV thrives on iron, so don't take any supplement or eat anything that has been fortified with iron. It's the main reason I try not to eat red meat, plus it's hard on the digestive system. Fresh garlic is a big part of my diet too... I would like to say I keep to organic but it's hard.

Kids change your life... I have two sons that are the pride of my heart. Instinct tells me that if you are scared to have a child, than you aren't ready yet. Give your new marriage a chance to grow... you have some time to play with.

Best wishes,

peanut

Hi, I'm 21 (I'll be 22 in Feb) and I also found out that I had Hepatitis C (genotype 1a) when I was a senior in high school. My twin and I were 3 months premature and I had to have blood transfusions right after I was born and that's how we think that I contracted the hep (there is no other way I could have gotten it, and my twin doesn't have it). I don't live a lifestyle that would further damage my liver and my liver is in pretty good shape. However, my hepatologist (who used to have hep and had a liver transplant) is very adamant that I get treated while I'm young and healthy. I'm married and my husband and I (along with my parents) decided that I should be treated this upcoming year.

I haven't told every single person that I know that I have the hep or that I'm getting treated. But, because I will still be going to college next year while getting treated, I feel that I should tell my teachers and some friends at school because I might not feel very good and will need their support and understanding. I have no problem telling them or my close friends that I have the hep. Since I didn't get it by doing drugs or unprotected sex, I have nothing to feel ashamed about. And neither do you! The only reason that people are afraid of the hep is because they don't know anything about it. I imagine it is harder for you because to tell the story of how you got it because you'd have to get into the story of how your mom got it and you might be afraid that it might reflect badly on you. I don't think you should be afraid to tell people. The more of us out there that are open about it, the less vague and mysterious it will seem to everyone who doesn't have it. It also helps if when you're telling other people about the hep that you have your facts straight and make sure they know that you know what you're talking about. I usually try to emphasize that the only way for it to get transmitted is by blood to blood contact. For instance, the most common is sharing drug or IV needles and cocaine straws. Also by sharing a razor or toothbrush with someone who has it because of blood on the razor that cut you, or the blood barrier that is broken (through your gums) when you brush your teeth. And in your case you might have gotten it from your mom during childbirth if she delivered you vaginally. I don't feel sorry for myself when I tell people that I have it, I'm happy that I know all I can about it and that I can educate others and hopefully prevent others from getting it. And as far as you getting turned down for a job because you have the hep, I think that might be illegal. It might fall under Equal Rights and Opportunities and if not, their loss!

I hope that helped you a little. I'm really glad to know that I'm not the only young person out there who has the hep.

Do you have any suggestions or tips about treatment? I have to do a shot of Interferon a week and 5 Ribavirin pills a day for 11 months. I'm very scared.

Texasaggie2004.. What your e-mail address.. i would love to talk to you i'am 23 yrs old and I have Chronic Hep C i have been treated as well.

your truly,

Georganna

well i 29 years old, i found out i have hep c about 2 years ago . i had a liver biopsy and it was a low stage 1 so we decided not to treat right now. i am now 18 weeks pregnant and they did some blood work and said my liver enzymes were increased to 300 , it was 107 at the time of the biopsy. does this mean my hep c is progressing faster ?? im really upset about this i have little to no education on this. and everything i read people live long lives with hep c is this true or do i need to worry ! some one please help!!!!!

yes i am 27 and still getting a firm grip on my diagnosis.

I along with you are wishing the same thing. There is such a negative connotation associated with this disease.

It was hard for me to join this group, because I thought if I joined a support group in person, that other people would see me and it would get back to my job and the people I work with as well.

I have 13year old son, and I am praying that he did not contract it from me. I was diagnosed 6 years ago, after I had my son, but I have had the disease since I was 2yrs old, due to an open heart surgery I had where I needed transfusions of blood. At that time, they weren't testing blood products for the disease like they are now.

It is good that you have a fiance and he is supportive to you I wouldn;t know how to begin to tell someone that i Have this disease.

Hello! I'm so glad I found this site! Wow, it's amazing to find people who are my age and have this. It is so hard to tell people, though the people that I have told have only ever given me their love and support.

I am 23 and have been diagnosed since I was 16. The assumption is that I contracted HCV from a blood transfusion at birth. I am currently pursuing a class action lawsuit for it. Anyone who received a transfusion Pre 1986 / Post 1990 in Canada (I am not sure elsewhere) should definitely look into this as they are changing the rules soon. I believe (according to my lawyer) that after June 2010 you cannot apply for compensation unless you have known about your disease for a year or less.

I was devastated when I found out, but I have gone through the stages of denial, anger and acceptance. I can only live the life that I have been given. I do not allow HCV to rule my life or how I am going to live. It does not control me, it is simply a part of me. I try and stay as positive as I can, however, some days it's just difficult to even get out of bed.

I am not sure what my geno-type or liver enzyme count is, though I can look it up in my files. I attempted treatment at 18 and my enzymes actually became elevated and so my doctor felt it was better to stop treatment. Unfortunately, in the last four years my liver has gone from stage 2 damage to cirrhosis. For now I am not exhibiting any of the signs that I will need a transplant, but I get blood test and contrast ultrasounds every 6 months to make sure. I am hoping that I will be able to retry treatment soon, as my doctor has told me I will need a transplant within the next 5-10 years. It seems like a while, but at 23 its no time at all.

Everyone who I have met (doctors and lawyers etc) say I am the most positive young person that they know dealing with this. I try and live as normal a life that I can, that is all you can do. Take time when you know you are not feeling well, don't over burden yourself and understand that you will be tired and lack energy. There are times when I sleep for 2 days straight because I am feeling so awful. If you go to University, contact your Disabilities program there and inform them, that way concessions are made for time missed in school and extensions are given if needed. I have survived University because of the kindness and understanding that I have been given. Know that it may take you longer (I can only take three courses a semester at best) but you can do anything you set your mind to!!!

To leave off, I have not told everyone in my life, but those who are important to me have given me nothing but support. They may not understand what you are going through, but I have never had someone shun me because of it. And if that ever occurs, that is not someone I want in my life. While there is so much negative stigmatism associated with the disease, people are willing to try and understand YOU with it, not IT with you. It's sad to say that some people will assume they can catch it from touching you, you need to inform yourself and them that it is only passed through blood to blood. Keep your head up!!

A little side note, I suffer from extreme itching to the point where I have lesions on my skin. Most are now confined to my legs, acupuncture has done wonders, but I have never found anything that has helped to take it away. This is really inconvenient as I always have to wear pants (I don't like people seeing) and I suffer from body issues from it. Has anyone ever experienced this and/or found something that helps? As I said it's getting better, but I am pretty sure I am stuck with it because of the state of my liver. I have reached the point where I don't care if my body is covered in scars, I simply want the lesions gone.

I am 22 years old and I was just diagnosed a couple days ago. I have known that something serious was wrong with me but I never wanted to find out because I was scared. I am married to a wonderful man who has made my life complete, and I have a two year old son. I have had almost all of the symptoms for a while now, the itching, tiredness, yellowish tone skin, nausea, etc and I never said anything. My husband & I are both having trouble coping with this. We are both angry, scared, it's hard. I have no friends because I've never had anyone in my life worth getting close to but now I wish I had someone to talk to. I havent told anyone, not my family, I'm ashamed, I feel diseased, and I really hope my husband doesn't have it. He doesn't deserve it. But he's got it in his mind that he is going to get it from me even if he doesn't have it already. I feel so bad and I'm really struggling with this.

I'm glad to hear about some teens around my age or in that ballpark at least. I'm 27 and found out since April that I have HepC. I just started my treatment 3 months after I found out that I got it. The tiredness is the toughest for me to deal with. I do get some exercise by walking my dog so it helps some. I have told my family members and one of my friends so it helps deal with the emotional stuff from the treatments. I do get little red bumps when I'm stressed around my left eye but they always go away after a few days.

The stigma associated from this disease is annoying but I never was doing that kind of stuff and I never share anything with anyone so I have nothing to worry about on that.