The following stories are submitted by the experts: actual people who had hep C, and slayed the sleeping dragon.
Give it away .... If you've cleared hep C - either through treatment or spontaneously (meaning it just went away - and hey, that does happen, albeit typically after ya cleaned up yer act), and you'd like to share your story with us, just slap it in an email and send it in by clicking on the little gold e ....
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Submitted: July 14, 2008
Thanks for the great site you have. I found it as I scoured the web for Hep C treatment information.
Well I am 2 weeks off of a year treatment and I am busy getting my sheet back together. I went negative after 3 months of treatment and am neg now and we'll see how things are in December. All in all I am glad I tried and even if I have a relapse, well, you can't win the lottery if you don't buy a ticket!
I'd had Hep C for over 20 years. Well it is time to give back to those who helped me. I'll look for yall next time you're in Daytona for I live near there. Anyway, I made it....my energy is coming back....but i won't cut my hair!! and my biker moustache has returned and i will be giving moustache rides with every pony ride for a lowwwwwwww down payment.
Attached is a pic of me and my latest scoot. Peace out and thanks again!!
-Mark R, Cocoa Beach, FL
Submitted: July 7, 2007
I am a 57-year old Viet-Nam veteran. I served 19 months in Country between November 1967 till June of 1969. While in Viet-Nam, there were times when I helped load some wounded and mangled, dead soldiers onto helicopters for transport to the rear. After coming home from the Nam, I engaged in risky behavior (drugs).
No one had ever heard of hep C then, and not till 20 years later did they finally call it hepatitis C, the “Silent Killer.” Never thought a thing about it, and life was going pretty well until in 2000. That’s when I took a quiz at the VA Medical Center. They said I was high risk, because I was in combat, so they screened me for hep C. ... and guess What? I had it.. I don’t know for sure where I got it. I did know one thing, though: I had hep C.
Not knowing any better, I just lived with it for a couple of years. Then I started getting tired, and my doctor sent me to the VA for a biopsy. Well, the biopsy showed that my liver was at stage 3, grade 4, so they considered treatment but delayed it because of poor diffusion in my lungs. Two years later I returned, and they said that the lung doctors had long enough and the nodules on my lungs were stable, so they started treatment in December of 2005.
Being that I was a genotype 1a, they said 48 weeks of treatment That was extended to 52 weeks. They said that if I was clear of the virus for 40 weeks, while on treatment, then I stood a good chance of staying clear. I cleared the virus at 10 weeks.
I had many side effects from treatment and really had a hard time. But I made it through with the help of people like Carol, Star and many others, who were there for me. I consider myself lucky to be on this earth, unlike so many others that have died from this disease. I thank God for that.
I did not realize how very sick I was. After 3 months off of treatment, I felt 300% better. My 6-month bloodwork just came back, and still no virus. I’ve gone SVR!!!
If you are one of those people with hepatitis C, you can beat it. It may be quite a battle, but it’s well worth it. I would encourage anyone with hepatitis C to seek medical advice and discuss all your options with your doctor, including biopsy, before starting treatment. In most people treatment is not easy, but can be rewarding, if ya clear the virus.
Skeeter Todd of Rolling Thunder Frames ... Dragon Slayer
This old-school, true biker's story offers a powerful message for those of us living with hep C.
Submitted: January 28, 2006
Hi, I would like to take a few minutes and share with fellow heppers the importance of "NOT" giving up!!! I found out I had this lovely disease about 2 years ago. I only knew some good friends of mine had it, and it killed 2 of them. For several more, the treatment did not work!!! So, as you all must know, that's not leaving much of a light at the end of the tunnel.
I started the treatment (Peg Interferon & Rebetrol) at the end of August, after Sturgis. I tell people it was the longest 33 months of my life. Actually it was only 11, but each month seemed like 3!!!
Anyhow, I came this close to quitting when my best friend – who also has Hep C – said, "Don't quit. I only wish I had as good of results as you have had". So thanks to him I stayed with it and found out last week that I had beaten it!!!
So there is hope for all of us, AND PLEASE
Submitted: November 3, 2006
My name is Frank, and I typically post under the pen name treecutter, that’s what I do for a living. I was an IV drug user for approximately 30 years. I was diagnosed with Hep C around '93. At the time I was told that "it was an innocuous disease.” I was also told at the time that I would probably die of old age or something else before my liver failed as a result of hep C. I believed them. I also continued to drink and drug until 2001. During which time the AMA (American Medical Association) came to learn more about the disease. I came to understand that many many people had the disease, but it was undiagnosed. I have had many friends die of the disease. I knew of a friend who treated his hep C with a Chinese Herbal treatment. But while using I couldn't care less whether I lived or died.
In 2001, I went into recovery and entered into the Narcotics Anonymous fellowship. While in NA I came to hear and know several ex-addicts that tried Hep C treatment. Most were successful. One friend of mine in NA – 18 years clean – died of liver cancer. After a year and a half in recovery, I decided to try the treatment. I was diagnosed with genotype 2, and had a viral count of just over 7,000,000. I was started on the 3 shot a week regimen of interferon, coupled with ribavirin. This proved to be unsuccessful. I only made it 8 or 9 weeks. I reacted so severely that I was hospitalized for 6 days. I was diagnose as allergic to the ribavirin. I discontinued treatment. Looking back I am convinced that the reaction was due to many reasons. I am further convinced that it was mostly a psychotic reaction that I suffered. Most of the fault lies with a very fucked up M.d. The doctor didn't do any monitoring or follow up with me. I didn't know this at the time. I stayed with the idea that I would remain untreatable until a new med could be developed.
Two years ago I did a tree job for an oncologist. Upon learning that a worker of mine was diagnosed with throat cancer and was traveling from our local rural area to a university hospital 30 miles away for his chemo and radiation treatment on a daily basis, he offered to take over the treatment and do without regard to whether or not his office took his insurance. He was offering to do this for free if need be. I was impressed! So last year when I had finally gotten a health insurance policy, I called the Doctor and asked if he could/would treat me. He said yes. I had some other health issues (a rotary cuff tear) that might need surgery, so we waited until April of this year to start. He was of the opinion that I was not untreatable. He was the one who discovered that my earlier problem with doing hep C treatment was a psychotic reaction – a symptom of taking interferon & ribavirin. I hadn't been eating well or resting enough and was not drinking enough water.
In April of 2006 he started me on just the shots, but this time it was peginterferon. I took the shot once a week , and did only the shot for a month. This, he felt, would allow us to see how I tolerated the shot. When we were convinced that there was no severe reactions, just the normal aches and pains, and slight emotional stuff, he then started me with the pills. I was closely monitored for two months with 2-3 office visits a week and that many blood tests per week. After a month on both treatments I switched to once a week. At this point I have to say it was very rough at times. I mostly was always irritable and always tired.
From the start of my office treatments I said that I would only do this if it DID NOT stop me from riding. It did and didn't! I found that if I drank a lot of water and took alleve and rested a few hours a day, I could go riding every day. I even took my shot on Thursday so that I would feel shitty on Friday and be better by Saturday. You see with me it was 24 or so hours AFTER I took the shot that I would suffer the most. This usually lasted for 24 hours, after which I would not be too fucked up. It was not always easy. There were times that I went on an 80-mile trip, and when I got to my destination if I stayed too long I could barely get home. I eventually would move my shot towards the weekend and if I wanted to go on a long trip (200-300 miles), I would move the shot to Sunday morning so that when I was coming home it wouldn't kick in till that night. I found that full days of riding (8-19 hours) were always hard on me regardless of what day it was. There were days that at 11 pm I could only ride at 35 miles an hour after riding all day. It made the return trips very slow!
After two months on both meds my hep C converted. I was tested and the viral load was undetectable, and all live functions were normal. However I suffered a bad case of food poisoning at 5 months. It was misdiagnosed and I had an abdominal surgery. I therefore had to suspend the treatments. It has been two months, and I am still virus free. In the surgery notes, the surgeon described my liver as being unremarkable (which is good – it’s not all rotted out, or cirrhotic – editor’s 2 cents). Today I resumed the treatments. I did so hesitantly and with much soul searching! It seems that if I stayed off the treatments, my chances statistically are 50/ 50 for not recurring. If I complete the year it can go as high 75/25 for no recurrence. I have to say that to choose to return to the morose symptoms of aches and pains and emotional turmoil is not an easy choice! But my work season is basically over until spring and I will be mostly idle anyway; what better time than now to complete this? Just like recovery, I will do this one day at a time.
I would say that if one took the treatment with all the proper precautions, it is do-able! Drink lots of water, take Advil prophylactically, eat well, rest daily (especially the day after your shot), and ride, ride, ride! I hope this helps some one else!
Submitted: July 20, 2006
I contracted Hep C in March ‘84 when I was working at a medical lab as a specimen handler. I’d have to work with up to 1,500 tubes of blood or urine every night. Lots of these leaked, and I wasn’t provided with good gloves, so I got blood, serum or plasma on my hands every night. I had cuts on my hands, and got the virus through those. Because it happened on the job, I eventually got workman’s comp, but it was a fight. Back then, Hep C was called Non-A Non-B Hepatitis. The insurance company did not want to pay benefits because I “did not have a disease or injury,” instead I had a “diagnosis of exclusion.”
My early disease and treatment was pretty crazy. The first time I saw a doctor, a family practitioner, I was told that I may have had hep, but that I was over it. For my nausea, my doc gave me compazine, but she prescribed it wrong. Instead of 75 mg four times a day, she gave me 750 mg every four hours. I had a buddy who had done time in a prison psych ward, and when he saw me, he said something about the thorazine shuffle.
Well, that doc was wrong, and I got lots sicker. I lost about 50 pounds, and eventually had a whole bunch of lymph nodes pop out. The virus caused my body to go into an autoimmune freak-out. I started throwing atypical white blood cells, red blood cells, and high levels of autoimmune antibodies. It got so bad that my liver doc thought I had developed lymphoma, but it turned out to be only the Hep. Things mellowed up about 1989, but my liver tests were abnormal, and I had the immune markers still going on.
By 1995, I was getting sick again. The first doctor I went to then said I had waited too long to do anything and was going to die. I had not had a liver biopsy in six years, but the last one showed lots of fibrosis and scarring. I was also developing fatty liver. I did not like what the doc was telling me, so I got a second opinion, from a liver specialist. He put me on interferon alpha, three million units three times each week.
While no one had done a test to figure out my viral load, my liver function tests remained high for the first three months on treatment. My doc had me increase by protein, up to 100 grams each day. My enzymes came down to normal, and I had my first viral test, which came back negative. Then I started to lose lots of weight, and began to show lymphoma-like signs again, so the doc cut me down to 1.5 million units three times a week for six weeks.
After six weeks, I went back on the full dose, and stayed on for another full year. One real twist to my INF tour was that I was in law school at the time!
Although I’ve had high enzymes and abnormal immune markers ever since my infection, I still have no detectable virus. I just had a liver panel done, and for the first time since 1984, my enzymes are normal.
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