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Readers Respond: What It's Like to Live with Hepatitis

Responses: 9

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Updated October 01, 2009

From the article: Living With Hepatitis
What's it like to live with hepatitis? For people with the disease and without, it's important to know how people experience hepatitis. If you could tell people one thing about what it is like to live with hepatitis, what would you say?

Living with Hep C

I've really felt alone in the past 6 mos. after reading these I know I'm not. I'm not involved in a support group because the nearest one is 35 miles away. I think it's true what Charles wrote, a lot of people with Hep. feel sorry for themselves, I do at times. I was diagnosed in 1991 w Stage 2 in 1998 I was 3+ I was on treatment for 8 yrs. 6 mos. ago my Dr. said if I need a transplant I should get it before I'm 60, I was 56. People don't understand, to look at me I look healthy, they must think I'm lazy, but thats their problem. I try & go to the YMCA when I can, the RA in my shoulders has caused me to drop my yoga & pilates classes, in turn this has depression. I just started taking vita. B 12, I just read above about the shots. I'd like to find out more about injections. On treatment I had to get close to God & right now I know I need to. Stress kills me so I try to eat right & keep stress at bay! Hopefully I can get on another treatment soon. God bless...
—david831

HEP.C

I DONT KNOW HOW LONG I HAVE HAD HEP.C. I HAVE 2B THE 6 MONTH TREATMENT& I WAS TAKING INJ.&PILLS FOR MY HEP.C FOR 5 MONTHS HAD TO STOP MY MEDS BECAUSE MY LIVER COUNT WAS VERY HI. FOR THE PEOPLE WITH HEP C. JUST DONT LET THIS GET THE BEST OF YOU. THEIR IS A LOT OF SELF PITTY WITH HAVING HEP C? I LIVE WITH SO MUCH FATUIGE ITS REALY HARD TO BELEAVE THAT IT COULD GET WORSE. MOURNINGS ARE HELL FOR ME. IT TAKES 3-4 HOURS BEFORE I CAN EVEN LEAVE THE HOUSE,I HAVE TO WAIT FOR MY MEDS. TO KICK IN , AND I CAN NOT MAKE PLANS BECAUSE I DONT KNOW HOW I AM GOING TO FEEL. JUST GOING TO TOWN FOR A COUPLE HOURS IS VERY TOUGH FOR ME AND MY LIVER COUNT IS GOOD,I GET VERY TIRED IT WEARS ME OUT,ITS LIKE POURING 200 YRDS OF CONCRETE. BE YOUR SELF AND TAKE A NAP WHEN YOU FELL LIKE IT. MY GOD WITH US
—Guest GARY WILSON

hepatitis b and c

I too stay tired, have genotype 1b. at 62 it very hard on me/
—Guest andy

Living, Living, Living

Apparently Hep C entered my life 30+ years ago. I was diagnosed in 2002 after a routine blood test. It didn't dawn on me that my first husbands illness might be related. I wasn't sure what he had exactly. I had known he had had Hep B when we met in '75 but didn't really know what that meant. When I got pregnant, I remember asking the doctor if his hepatitis would have any affect on the baby and was told it wouldn't. I never worried about it again. In '82 I was diagnosed with Hep A from handling raw oysters along with the manager of the restaurant I worked at. My family doctor said I could no longer donate blood, all was well after 6 weeks. In '90 I was diagnosed w/RA, OA, I felt like I had the flu all of the time. I was treated with steroids, the RA went into remission and I felt better just all of my joints hurt. After Hep C treatment, I had good & bad days all pain related. 3 weeks ago a pre-op blood test showed the Hep C was active again. Hopefully treat it again, keep stress away :
—snook8

HEP.C

DONT NO HOW LONG I HAVE IT I GET DEPRESSION SOME TIME BECAUSE I HAVE A LOT MUSCLE AND JOINT PAIN .I HAVE BULGING DISCS IN NECK MID BACK LOWER BACK,AND ALOT OF FATIGUE,I DONT CARE WHAT OTHER PEOPLE THINK IF THEY DO THEIR VERY SHALLOW,BE STRONG WITHIN YOUR SELF,DONT BEAT YOURSELF ,TRY TO STAY ACTIVE AS MUCH AS YOU CAN,IF YOU GET TIRED GO TAKE A NAPYOU WILL FELL BETTER WHEN YOU WAKE,STAY STRONG DONT WORRY TAKE A NAP IT WORKS FOR ME.
—Guest GARY WILSON

a bummer

i found out 5 years ago i had hep c and it took me that long to own up to it and to try treatment, which i am currently in a medical study for, you have to face it and take it by the horns and don't let it ruin you, do everything you can and live your life, and for people who don't understand it and give you a hard time don't waste your energy on them,you can't cure some peoples ignorance and thats worse then having hep c lol.
—Guest angrymama

Living with Hepatitis C

I was diagnosed with Hep C in 2004 gastro told me b4 I could treat I had to quite drinking 4 a yr. which I did. I tx'd in 2005 (am 2b Grade 2 Stage 4 with fibrosis & cirrhosis) relapsed than tx'd again in 2006 relapsed again. Have been on maintenance for 2 yrs but will stop soon due to financial situation (this seems 2 b the norm). I have extreme fatigue which I try 2 improve with B12 shots every 3 mths. I also take quite the regime of vit's, + milk thistle. During treatment & after my R/A has really advanced I take Celebrex + sulfasalazine but it doesn't seem 2 help. My stomach is very sensative now so I take zofran for that. I try to eat healthy & rest whenever my body needs it but with extreme fatigue I find I spend a lot of time sleeping. I don't mean 2 b so doom & gloom I am sure other's that have hit SVR do not have as many complications as I do. Main thing is to keep yourself in an upbeat mood, keep your diet simple but nutritious & NO alcohol. Thanks Coreen
—Guest Coreen

Living with Hepatitis

I also have cirrhosis, so I am very tired and have no energy quite often. I found this out about 2 years ago. I do a lot of on-line research, but don't look at other people's blogs because I found out it can just get you confused and afraid. Everyone is different. I listen to my doctor, take good care of myself by being careful not to do anything to cause bleeding, and eat right. I always carry bandaids and surgical gloves in case something happens. I believe we should be afraid, but with a healthy fear, respecting how we need to live. I don't dwell on the fact that I am sick, but just go about life as usual, with some adjustments. I take advantage of good days and rest on the not-so-good days. I was in the hospital twice in 2008, but none in 2009. Don't take life for granted. And remember there is always someone worse off than you.
—pbloomer

living with Hepatitis

It's scarey. The first ones I worried about were my kids (they are grown), and my boyfriend. I didn't want to have spread it to them. They say I have had this for 20 to 25 years. I just found out 1 1/2 years ago. I take it day by day, get depressed quite a bit. But I do not worry about comments from other people. It does change the way you look at life. Not knowing how long I have is the worst part. So live everyday as if it is the last one.
—ronily
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