New title for book about my experiences with hepatitis C

book

My publisher, Greystone Books, has just come up with a title for my book. The working title, The Miracle Cure, has become part of the subtitle. Here’s the new title, set in stone, I hear:

The Demon in My Blood: Blindsided by Hepatitis C and Stunned by Its Miracle Cure

Greystone is working on a cover design and plans to set a publication date for 2017.

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Hoping for Harvoni Support from Support Path Program

I have an update on my niece Sandy, who has hepatitis C and is getting worried about her stage 2 fibrosis.

Her mother, my sister, just talked with Gilead’s Support Path Program. My sister asked them to help her daughter with the high cost of Harvoni.

My sister reports that the program representative said, “We want to see everybody have access to the medication.”

Sandy has a disability and is on social assistance. She can hardly afford to pay rent. Gilead’s shareholders can afford to be magnanimous. I hope that means Sandy will be treated very soon.

 

Mom, coffee, and hepatitis C fibrosis

A recent study told me something I could have learned from my mother. My mother is 97 years old. She’s thin and spry. She tells jokes and does card tricks that baffle onlookers. The odd thing is that there’s nothing in her diet that would suggest great health, wits, and longevity. She eats very little and a lot of what she eats is processed food. Her favorite meal is canned soup.

But my mother’s favorite drink has hit the good-for-your-liver chart. She drinks coffee with every meal and between meals. Her coffee maker always holds a warm brew. The dozen or so cups she drinks each day may be too much for most of us, but a recent study has shown at least some coffee may help stave off liver fibrosis.

In the journal Clinical Gastroenterology and Hepatotogy researchers Natalia Khalaf, Donna White, and others studied veterans who have hepatitis C. They found that those with a higher intake of coffee showed less fibrosis. The researchers concluded that as little as 100 mg. of caffeine a day may protect against advanced advanced fibrosis in people who have hepatitis C. An eight-ounce cup of coffee contains 95-200 mg of caffeine.coffee

Let’s all join my mother in a toast for better liver health–with a good cup of coffee!

The stigma of hepatitis C can hide in a family

When I started this blog about hepatitis C, I didn’t plan to write about the stigma associated with the illness. About a year ago, just after my diagnosis, I was scrambling for information on treatment and on the prognosis of my disease, so that’s what I tended to write about. When I told my friends about my infection, most were sympathetic and helpful.

But this morning, a month after I learned I am 100% clear of hepatitis, the stigma hit home, literally. Home as in family. Home as in people you should be able to trust with your tribulations. Home as in a younger sister who might have been more comforting during the brief phone call I had with her this morning. It was brief because I lost it. I hung up on her.

My younger sister and I were talking about my mother, a tiny but spry 98-year-old who weighs 80 pounds and looks like a human, famished Tweety bird. My sister had just moved my mother to temporary lodgings at my nephew’s house, and we were discussing the housing situation. My sister asked me why, when I visited her in Florida, I stayed at my older sister’s house instead of hers.

“Mary has an internet connection, which I need for my work,” I said.

“I have an internet connection.”

“Mary has some nice roads around her house, and I like to go for walks to keep healthy.”

“I have very nice roads around my house where you can walk.”

“Well, I like staying in the room Mary has with the connecting bathroom.”

That’s where our niece stays, my sister declared. “She has hepatitis C, and it sits there for two weeks in bathrooms. It can sit on something for seven to 10 days.”

I had never told my sister that I had hep because I knew she would tell my mother. I didn’t want my mother worrying about me in her fragile old age. But it never occurred to me that anyone in my family would  propagate the stigma that is so hurtful to people who have hep. So I spewed out my story. I told my sister I had contracted hepatitis C from a blood transfusion the day after my daughter was born. I told her she was wrong, wrong, wrong. It is impossible to get hep from a toilet set.

Then she claimed she had done her own research and was sure that it could happen.

“I’m writing a book on the topic. I’ve read hundreds of research studies. It’s impossible for that to happen!”

“But, but . . .”

I hung up.

After running this through my brain for several hours, I am cooling down. Hepatitis can hide in your body for decades. Prejudice can hide in your family. But your family will always be your family. We can give them the benefit of the doubt for their ignorance and show them the compassion that everyone deserves. I will probably soon apologize to my sister for hanging up on her.

Perogie thoughts

As the long weekend approaches I look forward to my family’s annual Easter Perogie Fest. We get together with friends and knead big lumps of perogie dough. Then  everybody joins in to fill at least 100 little dough-rounds with cheesy, oinony potatoes. The feast will be a good time to gain back the weight that melted from my bones when I had hepatitis C. You’ll notice I wrote “had” hepatitis. I got the news just after noon today. I’m clear!

It felt like I was on a long road to health since I learned I had the virus last year, but it was actually a very short path. Many thousands of people in earlier years braved interferon treatment. Others have suffered from cirrhosis, and many have needed transplants. I was very lucky.

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Making the call on an April Fools hep C viral count

It’s April Fools Day, and it’s the day I call my nurse about my 24-week viral count. Maybe it’s not the right day to do it. Could the virus have fooled me? Will I learn that my gold-plated treatment with sofosbuvir and simeprevir was really worth less than a penny? There are no pennies circulated in Canada anymore, so the result could be worse than the worst for me.

But April Fools can also bring luck. The weather network predicted rain, but I see sunny skies outside my window. I’m crossing my fingers and will be making that call. Life moves ahead, no matter what you do. The best thing to do is to take charge–even if it’s only through a phone call.

Those acronyms in hep C virological response — what they mean

This coming week I will be getting my six-month viral count, which should determine whether my hep C has been cured. I’m confident I’ll achieve SVR. That’s because I had an RVR, an EVR and an ETR. Here’s what all those acronyms mean:

RVR: Rapid virological response means that hep C RNA is undetectable after 4 weeks of treatment.

EVR: Early virological response means the virus is undetectable after 12 weeks of treatment.

ETR: End of treatment response means no hep can be found in the blood at the end of treatment, which used to be 6 months to a year. Now, it’s often 12 weeks or less, so EVR and ETR could be determined by the same test.

SVR: Sustained virological response means the viral RNA can’t be found 6 months after treatment.

I’m hoping for SVR, and I have a good chance of it. Researchers say achieving an RVR is a predictor of treatment success. I’ll write more on this in the next post. In the meantime, I welcome comments on how your acronyms have been going.