Friday, March 26, 2010

Karen's Personal Hep C Story

I found out I had Hepatitis C 2 weeks after I got married. I was 29. I went to get a wisdom tooth extracted and while I was knocked out- the nurse pricked her finger and they tested my blood. I havent thought about that in a long long time ( I am 39 now) but looking back I have to say- WOW. I cannot believe that random finger #### happened. I probably would never have known!

I was not at all surprised about the Hep C. I was a teenage runaway and junkie. I started heroin at age 16 and stopped for good at age 20. I actually felt relieved about Hep C because it wasnt HIV- which my brother, whom I had shared drugs needles with, had contracted a few years earlier. So, I hung up the phone and called a friend and told her I was too confused and didnt know what Hep C was but could she please look it up online and call me back. It didnt really seem like a big deal to me. (compared to HIV anyway) I felt embarrassed that I just got married to a very stable and very normal man who did know I had done drugs when I was a teen but probably didn’t know that I used them intravenously. Nine years had gone by and I was a totally different person- someone that didnt seem like theyd lived the way I had. Now all of this shame was back up again.

I went to the liver Dr. in Virginia. He was the top guy in the Wash, DC area. I joined Delphi forums. I was told I was a 3a genotype and did a biopsy that showed like a 2.5 grade or something. I started treatment. I was a newlywed and a new stepmother to a 10 year old girl. I was afraid of feeling sick and I was afraid of the emotional side effects of the ribovarin. In my family- I have lost my father and grandmother and uncle to suicide. I was afraid that I would become like them. So- after about 2 months on treatment, I started to miss pills. When I was told I was clear at 12 weeks or so- I stopped the pills and just did the shots. I was too young (emotionally) and just didn't care enough about myself to do the treatment.

That was 10 years ago. Since then, a lot has changed. My marriage ended up not working out after 5 years. I left the DC area and came to Los Angeles. I went to a liver guy and they told me that the Hep C was back. That wasn't a surprise. So- technically I am called a "relapser" but I really only did about 12 or 15 weeks on treatment or so. I got ready to do the meds again a few years ago. I lived by myself and got really down about "what is the point of life?" For many of us women- we hit that age where you have to decide- kids or no kids? I had four miscarriages with my husband and knew that getting pregnant would be hard if even possible and on the day I was to start meds - I called the treatment off. I couldn't bear to lose two years of potential babymaking time because of toxic chemicals in my system. I had to at least TRY. If it was in the master plan for me to be a Mom- then I would try till I was 40 and see what happened.

And we all know what happened next. I got pregnant. My Dr was shocked. I didn't even believe it until there was an actual person flailing around in front of me. I had a few moments in the deliver room where all I could see was blood and I was horrified that my Hep C blood was all over this place. Thats how Hep C is... you always have a little tiny monkey on your back. Here was the most beautiful moment of my life- and Im wretching inside that my blood is going to get all over my friends and family.

So here we are now. I am 2 months away from turning 40. My son is 2 years and 3 months. I started treatment 12 weeks ago and I take every pill and shot as directed. I had a huge viral load and I may possibly end up doing a year on tx even though Im a 3a.

This is not easy. I work from home and have had to take more work on to pay for the 1000$ a month co-pay. My child is home with me and he isn't talking yet but sure likes to scream really loud. I live with my sons father, as co-parents. I didn't think it was fair that we should split custody of such a young child so we decided to live together and its worked out pretty well. I am lucky to have someone to help me with my son. The WORST part of treatment for me is feeling like I dont have energy to give this guy the childhood he deserves. Zoo, park, train museum, Disney- all of those things take energy. But I do it. I've let Hep C take enough of MY life already ..I don't need it butting in on my little boys life.

Its been a long ten years with this. One fourth of my life has been spent with this little C-shaped skeleton clanking around in my closet. I have no idea what I will feel like when the meds are done. I have no idea what normal even is. I sure do hope to find out though!!

Thanks guys for listening. It feels pretty good just to put this out there. :)

Connie's Hepatitis Story

Hi, my name is Connie and I have been living with hep c since 1988. I have tried and failed treatment 3 different times. My dr. recommended I receive a liver transplant last July and actually rec'd one in Oct. 09.

Still fighting with the hep c and on my 4th round of treatment, hoping to at least slow this puppy down enough to wait for the cure. I know it's coming, hopefully in my lifetime!!!!!

I believe public awareness is key and should be started with education of the children; they need to know how important the liver is and just what its functions are. How they should avoid medications and alcohol as much as possible.

I also believe that blood test for hep c should be given at least by the age of 30 unless otherwise indicated; it should be part of your physical just like mammograms, colonoscopies, etc.

Hopefully with people like you to help bring this out we will be able to stop this disease. God bless and good luck. Connie

A Story of Courage - David's Story

I really don’t know where to start here. Some of my journey has been a nightmare and other parts have been a blessing.

I guess I’ll start with my diagnosis of hepatitis c. Life history? I don’t think really matters so much except for the fact that I didn’t know disease’s such as aids or hepatitis existed. We’re young and do things. I lived with an out of the way crowd and I expect this is how I contracted hepatitis c. See, we were sitting around a table one night, drinking and decided we were going to tattoo each other, which we did. You have to realize, I’m now a 55 year old male and at the time I think I was maybe early 20’s First tattoo at 16. Anyway, 30 some years later…..I always worked hard to provide for my family and found myself getting seriously tired all the time, didn’t feel like eating and my concentration levels were wavering. Well, I had been throwing up in the mornings before work for months. Went to work, did my job, and things kept getting worse. Forgetting things, falling asleep at work at my desk (I never did that in my life). It got to the point where I couldn’t handle the throwing up every day. I was getting bloated, my stomach kept swelling. I would drive home on the highway for a distance of maybe 30 miles and started getting lost. A trip I’d done a million times. Something just wasn’t right. I think the big one for me was talking to my son one night in and I honestly couldn’t remember his name and I was jaundiced. My son and I talked all the time. How could I forget his name? Off to the doctors. I was sent for an endoscopy for the throwing up issue at first, (well I think my doc had other things on her mind also). After my procedure Mr. Doc comes out stating..”David” you’re a very sick boy…diagnosis..severe pylori infection and hepatitis c. I know enough about anatomy that I can say I was having liver pain but thought it was from beer…NOT…Gastroenterologist sent me to a hepatologist at the Cleveland Clinic where they did a multitude of tests. Long story short. My results came back with active hepatitis c and with the upper quadrant pain I was having they wanted to evict my gallbladder. I said do it and they did. At the same time they did a wedge biopsy of my liver which I’m glad for as it takes a bigger sample of the liver for Mr. Pathologist to look at. My results came back with genotype 1b with advanced cirrhosis and I need to start treatment as soon as possible. GREAT…..I seriously educated myself in a hurry about hepatitis c and the treatments. Oh Joy…Funny thing about all this is that I never got mad or really scared..Just..Let’s fix it. I also had cryoglobulinemia with my diagnosis which explained a lot about why my hands were freezing up outside in cooler weather an going back to normal when they warmed. God, this has been a while and I’m forgetting so much.

Starting Treatment:
Sticking needles in my stomach??? Okay, I did it and got used to it, I guess? First two months I had to have blood drawn every week because of the state my liver was in. Funny, Doctor told me to keep something close by me to drink all the time so I elected to drink pop…big, big mistake. It would have been nice if he had told me water. Anyway, I got sick…ended up with wooly cottonballs for my eyes…anemic . Depression? WOW……I’ve never had an issue with this in my life. Two months into treatment I was balling my eyes out barbecuing and I love to barbecue. Sleep? Forget it. It wasn’t happening. I was up for so many days and nights I was honestly hallucinating. My wife at the time told me I was having a conversation with my kid brother in the living room. She asked who I was talking to and I told her to go….herself. I don’t talk like that. Thing was, my brother I was conversing with in front of my face lives over 1000 miles away. Back to the doctors I go. There comes a time when you just have to realize you need help, no matter how stubborn you are. Had to see psychiatrist and gave me meds for depression..celexa, which I must say worked very well for me. I could cook again..yipppeee….my next issue was the sleeping. The doctors always said I was kind of a unique patient because they tried so many things on me that just didn’t work and were strong enough to knock out a horse. They tried everything, believe me. Toward the end I ended up taking 20mgs of ambien combined with 600mgs of neurontin just to get to sleep. That’s a lot of meds. Needless to say my life was, well I was, a walking or sitting zombie.

At this point I need to mention and feel this was a life saver for me. Doing my research on this disease, I came across support forums for people like myself so looked into it. I was an outdoor guy, knew nothing about computers let alone type? Got to be kidding me. My wife at the time was actually a good support system in the beginning and typed for me when I went into chat rooms at Janis and Friends. I am going to say this. If it wasn’t for Janis and Friends Hepatitis C support forum I would likely be taking a dirt nap now. Not a plug but a fact. God, this could be a long story.

Okay, I’m sleeping now, depression’s under control, now I become anemic. I dropped from a hemoglobin level of 17+ to below 10 in real short order. PROCRIT…another weekly injection. No big deal really because it kept me where I needed to be. Pegasys in my tummy and procrit in my thigh, for 44 weeks.

I know I’m leaving a lot out of this story as I have just forgotten. I used to have a journal but it left home. The whole emotional aspects of this disease and what it’s done to me personally? Hard for me (treatment story isn’t over yet) to really say. In a lot of ways I’m glad I got sick as it woke me up, changed me. Gave me the desire to help people, love and care. I wish I could convey to people what this has really done to me and for me. I use to care just about Dave. Now Dave doesn’t care about him but about the people he can help. Funny story here and I might as well share as I seem to be on a mission?. God, my Grandmother was from and always use to tell me (with my hand in hers) David…some day you’ll be of help to people and find who you are. I never believed this but find that I now want nothing more than to help people. Did having hepatitis c change me? OH YES!!!

I devote my time to helping people when I can. Cleveland Clinic had me do a television interview about hepatitis c hosted by Regis Philbins wife Joy. I’ve talked at schools yet I will never be able to do enough and now find I just don’t have the energy or funds to do so.

Back to my treatment journey…Half way through treatment my throat started acting up. I got hoarse and was at first diagnosed with oral thrush. Fixed that and it came back. Still was talking like a mafia dude after that was cured. Okay Dave, you have a cold. Six months into this nonsense they diagnosed me with cancer in my larynx. Fun never ends. Had surgery for this and never missed one shot of my interferon treatment. Someone had to be watching over me. I had also acquired hypothyroidism during this escapade. 56 weeks of interferon, diagnosed with genotype 1b with advanced cirrhosis I’m still alive and doing quite well. Yes, I have issues with ascities, other things, but…I do not have hepatitis c:-)

Another short story…Dang, I could go on all night. I had a gastro once that asked me to teach him about hepatitis c. He is now the head of diabetes for the clinic. He didn’t know enough about hep c? Please educate yourself about this disease and teach others. Doesn’t matter who they or you are. You can never stop learning.

How am I today???? I’m going to be truly honest here. I no longer have hepatits c but I didn’t listen to my body. Well, I guess I did and was just too naive or stubborn to deal with it. I now deal with issues like, insomnia ,have dealt with cancer again ..I live in chronic pain and there are a lot of nights I wish I could just go to sleep and never wake up again. Thing is…what I deal with now has nothing to do with my having hepatitis c, (well the emotional caring part does), or the treatment I took to rid myself of hepatitis c. I get comfort out of doing research about hepatitis and helping those that are so lost coming into this. I feel so bad and wish in my heart I could take everyone’s pain away.

I could add so much more to this but it’s already getting lengthy. More than welcome to email me at