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.


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.

Thoughts for the day

I’ve said on this blog that I’ve been cured of hepatitis C, but I’m actually only 98% sure. I’ve had a 12-week SVR, but my nurse says nothing is absolutely certain until 24 weeks after treatment. That is coming soon.

In the meantime, I’m thinking of some sayings that helped me when  my confidence in a cure was way less than 50%. My dear friend Marla gave me a book on mindfulness. It brought to mind some Baby Boomer slogans that helped me through the uncertainty:

Seize the day

“Today is the first day of the rest of your life.” –Charles Dederich, founder of the Synanon drug rehabilitation program

“Seize the day.” –translation from the Latin “carpe diem” from Quintus Horatius Flaccus, possibly taken from a Babylonian saying

“Be here now.” –Bhagavan Das

Waiting for hep C treatment under the creepy creature time bomb

It’s coffee break time. Some 200 attendees at the Canadian Symposium on Hepatitis C have just applauded one of the many brilliant speakers. The symposium is three-quarters over, and so far I’ve learned that researchers in hepatitis C are pressing to get more people tested. But once they are tested, the jury in this field is out on whether they should be treated–yet.

Many researchers suggest that treatment wait for at least stage 3 fibrosis. That would be less of a burden on Canada’s health care resources. But it leaves those who have been diagnosed having to contend with the ticking time-bomb feeling.

I went through that feeling. It was for a very short time because, luckily–or unluckily–I was at stage three. And luckily I was cured through Gilead’s Solvaldi and Janssen’s Galexos–and no interferon. But even the short wait I had before treatment produced a creepy feeling. It felt like a tiny creature was colonizing my body, and it had fangs that could bite any time.

People are sipping coffee, and we will all be heading into a few more sessions soon. One will be a debate on the very topic I’m writing about. I’ll let you know whether one side wins.

Dog Days are Hepatitis Days in Florida

My dog Zeena

My dog Zeena

I’m in Florida visiting my family, and all day I’ve been talking with people about dogs. I have a dog in British Columbia, and my two sisters here each have two dogs. I’ve been sitting in my younger sister’s kitchen, watching her nine-month-old German Shepherd, Wolfie, harass my sister’s four-year-old German Shepherd. Mia doesn’t appreciate Wolfie’s incessant sniffing, prodding, and galumphing. When he wants to play, she snarls at him.

My older sister’s dogs are better bonded as siblings. Marco, an enormous yellow lab, is a playful four-year-old, while Gracey, a smaller black lab, is his best friend forever. Gracey is drifting into old age but happily tolerates Marco’s puppy-forever antics. And Gracey has been sluggish lately. The vet says she may have a heart condition.

So my sisters and I talk into the night about our dogs while my tiny, frail 97-year-old mother listens. One of my sisters knows I have hepatitis C while the other does not. Neither does my mother. And the dog talk goes on while my mind stays half on the hepatitis topic. I guess it’s good that half of my sisters know about it.

Coming out with my hepatitis C status and how it helped identify my real friends

If you’ve been following this blog, this may be the first time you’ve seen what I look like. I started writing about my experience with hepatitis C very soon after my diagnosis. But like a lot of people, I was shy and didn’t want to announce my illness to the world. This week I decided to post my mug shot right at the top of this page. During my treatment and up to the time I learned that I have probably been cured, I’ve thought a lot about friendship. I’ve decided that people aren’t really my friends if they think I might infect them or if they question my integrity because of my illness.

wheatI’ve decided to fraternize only with caring, openhearted people. Having hepatitis C has helped me to be more efficient in sorting the wheat from the chaff in people. Since you’re reading this blog, I’m pretty sure you’re among the wheat.


In memory of an enthusiastic friend, Alicia Priest

Today I learned that a wonderful friend of mine passed away after suffering from ALS. Amyotrophic lateral sclerosis, the same disease that afflicts physicist Stephen Hawking, can attack the body slowly, as in Hawking’s case, or more quickly, as with Alicia. She was diagnosed in 2012. During her illness Alicia wrote the book A Rock Fell on the Moon. It is the story of her dad, the convicted mastermind of the Great Yukon Silver Ore Heist. Alicia raced to complete the manuscript before her typing muscles withered. The book, which I’m reading now and enjoying immensely, was published last last summer. By that time Alicia was unable to speak. Anna Comfort, managing editor at Harbour Publishing, which published A Rock Fell on the Moon, told me on the phone today that Alicia never lost her enormous spirit, and she never stopped traipsing through the province attending book events. Her husband Ben Parfitt and daughter Charlotte were at her side.

I could tell you a lot about my memories of Alicia. A favorite one happened when we attended journalism school together. We were asked to do a presentation on Baltimore journalist H.L. Mencken, and instead of the usual slides and academic talk, we wrote and performed a skit. Alicia was the sarcastic Mencken, and I was his demure wife. We dressed in period costume and drank real wine on the set, to the dismay of our startled instructor. We lost a few marks but we gained many laughs.

What does this have to do with hepatitis C? Maybe nothing, but maybe the fact that despite a daunting diagnosis, we should face life creatively, with enthusiasm. Like Alicia did.

My Big Hepatitis C News: the 12-week post-treatment viral count

The door to my right was open onto the treatment room, where two men and a woman rested in puffy brown-leather chairs with IV lines hanging from metal frames above the chair backs. A hallway extended straight in front of me where a string of office doors lay open or shut. Two nurses scurried past into the narrow hall. Neither of them were Maria. I was anxious to see her. I was waiting for news.

Suddenly there she was. Suddenly she hugged me. “It’s undetectable,” she proclaimed, and we smiled at each other and laughed. That was just yesterday. My hep is gone Although the standard for a cure has been an absense of detectable hep RNA in the blood 24 weeks after treatment, the Federal Drug Administration in the U.S. recently began accepting a 12-week null count as proof of a cure. I’ve reached my 12 weeks! More to come.