Are You Looking for Advice about Hepatitis C?
Knowing where to go after being diagnosed with hep C can be confusing. A hepatitis C diagnosis can leave you feeling alone and lost.
Feeling alone after a hepatitis C diagnosis
Back when I was diagnosed in 2005, there was absolutely nothing online about hep C. There were no support groups and in fact, I was sent to an infectious disease doctor, not my normal physician. So, to really make me feel isolated and alone, that did it. I was humiliated and embarrassed walking into that office. I felt as though I did something wrong and was now labeled "defective". That was far from the truth, I know now, but back then, not one person openly said, “I have hepatitis C”.
They said I wasn't sick enough for treatment
Not knowing much, I searched out the then only half dozen books about hepatitis C; Three of those books were from a hepatologist in Denver, Colorado. I read those books cover to cover and one of them I read like 3 times. I wanted to know all I could about hep C. After being turned down for hep c treatment in 2006, just after my mother passed away, I sought out this doctor in Denver. At the time, he was no longer taking new patients, so I waited and really put hep C and my liver health on the back burner. After all, my infectious disease doctor told me I was "not sick enough" to warrant the then only horrible treatment of interferon. But let me remind you, I witnessed my mother pass away from hep C. Sitting at her bedside knowing I had the same disease frightened the heck out of me.
It was 2010 that I landed up in University of Colorado Hospital with a blood pressure above 236/112. It was then that the on-call doctor (Dr. Everson, the author of the books I read) came in to see me. He was now assigned to my liver health. I guess you can say it was fate he became my doctor. I was now being told my liver health is deteriorating rapidly and I was now stage 4. So, in 4 years I went from stage 1 to 4. Doctors cannot say why one’s liver all the sudden kicks into high gear, but mine did.
Finally, a doctor would help me
Knowing more because I read this doctor's books, I knew everything he was telling me. I also posed several questions to him as I would read an article here and there and was curious. His words to me were, “Kim, not everyone knows and understands about the liver or hep c. There are lots of speculation and rumors surrounding this disease. I suggest you not listen to everything you hear nor read. Ask me and we will set you straight.”
My mission to help others
It was then I realized because by then many support groups began forming online and more was being printed about hep C. I would see things that would seriously get me fired up - FALSE things that others were saying about hep C, misleading everyone in the group to believe such false information. I started up my foundation in my mother’s memory in 2015 and with that, we began to launch private support groups for which we posted only truth, documented information usually approved by my liver doctor. He found that more needed to be done about posting accurate information so not to cause panic or misguided information with the public.
Do you need help?
Today, I am also excited to be sharing my story with one of the most amazing groups out there. Sharing stories and information, and accurately. Hepatitisc.net is truly one great place for someone newly diagnosed to find information pertaining to hep C. We document all varieties of transmissions, cures, side effects, and experiences.
We have experience. We have knowledge about how you might be feeling. We are not doctors, but we are on the frontlines of the disease. Before you take something to heart that sounds off when you read about liver health or hep C, ask questions. Talk to your liver specialist and get the facts. Do not assume because it was posted on social media that it is correct. Go to trustworthy sites such as this ask the hard questions you might be afraid to do elsewhere. We will guide you the best we can and always encourage you that your first source should be your doctor.
Does reading hep C patient stories aid you in your journey?