by Kim Goldberg
January 28, 2016
I am a poet. And my recent journey through Hepatitis C treatment and cure has given me the poem of a lifetime. That poem has now become my latest book: Undetectable.
I had Hepatitis C for more than 40 years before being cured in 2015 in a clinical trial of Harvoni, the world’s most expensive pill.
I was first diagnosed in 1995. But I probably contracted the virus in the early 1970s from injection drug use as a teenager. Until last year, I had secretly co-existed with Hepatitis C for nearly my entire life, and certainly my entire adult life. I am eager to find out who I will be without it!
Hepatitis C is a virus that slowly damages the liver over a period of many years. It has the potential to lead to cirrhosis, liver cancer, and even death. It is the leading cause of liver transplants in the United States and Canada, and has surpassed HIV as a cause of death.
Approximately 250,000 people in Canada have chronic Hepatitis C, and more than three million people in the United States. New estimates place the US figure at potentially seven million.
Worldwide, there are at least 180 million people living with this virus. The majority of people with chronic Hepatitis C don’t even know they are infected, even though they may have had the virus in their bodies for decades.
A Life Unaware
Back in 1977, I completed a Bachelor’s degree in biology from University of Oregon, in my hometown of Eugene. I was fascinated by viruses and their status as quasi-life, existing as they do on the cusp of our definition of life. It would be many years later before I discovered the virus occupying my own body.
Since 1985, I have supported myself as a freelance writer in Canada, winning awards for my investigative journalism, poetry and spoken-word performances. In that time, I have authored seven books of nonfiction and poetry, as well as screenplays, essays, science fiction stories and a couple thousand articles for newspapers and magazines. I was a current affairs columnist for Canadian Dimension magazine for 12 years, and a freelance news correspondent for the Vancouver Sun in the 1980s and 1990s, among my various gigs.
But my writing career was not the only thing growing during those years. The progression of my undiagnosed Hepatitis C was accompanied by fatigue, nausea, unbearable itching, dizziness, cancelled journalism assignments, a brain wrapped in cotton candy, swollen knuckles, stiff knees, days in bed with no food, nights with no sleep.
My physical symptoms disappeared after I was diagnosed in 1995 and made immediate changes to my diet and lifestyle to support my liver. In 1997, I began studying T’ai Chi, Qigong and Liuhebafa. These practices involved rigorous physical conditioning, further bolstering my health.
However my shift to writing poetry in 2005, after a lengthy career of hard-hitting journalism and nonfiction, was partly a result of my brain no longer being able to hold hundreds of facts, quotes, connections and timelines long enough to generate a complex political article, let alone a nonfiction book. Such cognitive decline (brain fog) is a common consequence of Hepatitis C. Fortunately, it seems to disappear after the virus is gone.
Yet I do not feel diminished by this experience. My journey has been wondrous and transformative. I would not be who or what I am today without every part of it.
In May 2015, I was lucky enough to land a seat in a clinical trial of Harvoni plus ribavirin for genotype 3 people with Hepatitis C. The New Zealand version of this trial had a 100 percent cure rate for people with my profile. So I was excited to make the cut for the Canadian trial!
My study group was based at the LAIR Centre in Vancouver, BC. I live on Vancouver Island, which meant I had many early-morning ferry rides to Vancouver for my check-ups. My 12 weeks of treatment often felt like an extended cruise ship holiday. (Well, okay, maybe not the hemolytic anemia caused by the ribavirin.)
After just one week of treatment, I was saying “Hello, brain! Long time no see!” That’s how quickly the new drugs work. After my first seven days of treatment, my viral load had dropped from four million to 130. After four weeks, I was undetected. And I have remained undetected ever since.
Given what is now known about the life cycle and replication process of Hepatitis C, and the action of the new direct-acting antivirals on the virus, it appears that the new drugs do indeed provide a true cure for Hepatitis C, not simply a remission. They eradicate the virus from the body.
Various all-oral treatments are now available for Hepatitis C, all with extremely high cure rates—often 95 percent or higher. For the current list of recommended treatments for each genotype, see this chart.
My Book: Undetectable
I spent my 12 weeks of treatment writing my latest book: Undetectable. The book is a poetic account of my Hep C journey. I am now using my new book to raise public awareness about Hepatitis C and the politics of withholding the pricey new cure from so many who need it. The book is dedicated to all who are still waiting.
I wrote Undetectable in a Japanese literary style called haibun. Haibun consists of short, descriptive prose (often a travel diary) paired with haiku poetry. Matsuo Basho, Japan’s most famous and revered poet, launched haibun in the 17th century with his Narrow Road to the Interior and other travel diaries of his foot journeys during the final decade of his life. Basho made the journeys, often in failing health, after he had lost or given away what little he owned. It is a narrative rich with resonance for anyone who has lived with Hepatitis C.
Basho’s journey took him to the rugged interior of his country as well as the esoteric interior of himself. I followed in his footsteps (figuratively speaking) as I wandered Nanaimo’s streets, forests, rocky beaches and dark colonial history during my 84 days of treatment. All the while, I found myself meditating on the many meanings and examples of things undetectable: the virus being driven from my body, the mycorhizza connecting all the trees, the homeless man sleeping beneath the highway, the experiments at the Nanaimo Indian Hospital before it was bulldozed, the 97 humpback whales killed and processed at Piper’s Lagoon until there were no more whales…
As we say in Liuhebafa: May you be river flowing, never ceasing.
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Good fortune follows good people.
Thank you! 🙂
Hi Kim, my name is Dave….53 years old from Chicago, where I live with my girlfriend and a hep c virus that I hope to heck will be gone soon. I am currently being treated for the above virus (hep c not my girlfriend) with a combo of 1200 mgs daily Ribaviron, 400 mgs of Sovaldi, and 60 mgs of Daklinza…….both daily as well, and all three for for twelve weeks. The Daklinza is included due to the fact that my gnome 3 has early stage cirrhosis along for the ride. ( The cirrhosis is so early onset that the Fibrascan did not detect it’s presence, which was only done through a biopsy).
I saw a post of yours while searching around for natural ways to try and keep your Hemoglobin level from dipping into the anemic range. Having, at six weeks in, begun to experience my first pangs of side affects, indicating some potential blood cell issues, I do not AT ALL relish the idea of them becoming intense.
One thing that stood out was I see you were on a twelve week course. I was very concerned when they put me on twelve weeks. I had not seen anybody on that time frame with my diagnosis, however my Dr is a respected Hepatoligist, very well known in Chicago, and I get along with and like him quite a bit. He assures me that I’m right where I should be. Indeed at only 18 days in my numbers had changed as such …..SGOT went from 65 to 25…. SGPT from 68 to 19……..and it showed this <12 ( My Hepatoligist said that these numbers, especially at under 3 weeks of treatment, showed him that I was "absolutely on my way to cured", as long as I continued the course on time every time. I am not at all knowledgeable when it comes to the numbers. I actually stayed far away from reading about things so as not to talk myself into any side effects, if you know what I mean.
I'm very interested in getting some of your writings. I am also a writer. I love writing mostly short literary fiction…….least I love to try. Please tell me your thoughts…. I very much look forward to hearing from you……..Best to you. Dave…..firstname.lastname@example.org
Hi Dave. Thanks for stopping by my site and sharing your story! The current treatment guidelines from the AASLD (American Association for the Study of Liver Diseases) is that treatment-naive Genotype 3 people with compensated cirrhosis (i.e., you) should have 24 weeks of Sovaldi+Daklinza+Ribavirin, not 12 weeks. From their website: “Daily daclatasvir (60 mg*) plus sofosbuvir (400 mg) for 24 weeks with or without weight-based RBV is a Recommended regimen for treatment-naïve patients with HCV genotype 3 infection who have compensated cirrhosis.”
I would suggested printing out this chart for your doctor or giving him this URL: http://www.hcvguidelines.org/full-report/initial-treatment-box-summary-recommendations-patients-who-are-initiating-therapy-hcv.
12 weeks might cure you, but 24 weeks would be a guarantee. If you didn’t have cirrhosis, 12 weeks would do it. I didn’t have cirrhosis.
As for curtailing the hemolytic anemia caused by the ribavirin, I have seen studies that indicate that high intake of anti-oxidants will reduce and delay the onset of the hemolytic anemia. Also possibly vitamin D. Just be sure you don’t take iron pills for it unless you have been diagnosed with iron-deficient anemia. Hemolytic anemia is different. Most people recover their normal hemoglobin and red blood cell level 2-4 weeks after completing treatment. Still, it’s a drag while it’s happening!
Kim, thanks for your input….yes I’ve seen the phase 2 and or 3 studies that show the current guidelines for treatment. I brought this up to my Hepatoligist; he flat out said that this is the guide line for my situation. Well, I’m intelligent enough to know that some brief research shows that NOT to be the case. He, however, not only sticks to that, once I bring the conversation back around to the subject, he, in that MD way, gets put out. I can only say that I saw some things early on in the process that lead me to believe that my Dr has a reason for me being at 12 weeks. Just after my initial testing, I saw a document of some sort while at the Dr’s office that said something about 24 weeks. So I believe he requested that. Of Course right? Why wouldn’t he? This guy is a highly respected specialist……..most of his two decades in practice have concentrated on Hepatitis. So he knows…..And I know he knows.
My INS (Aetna) is through my girlfriends policy. I signed on SOLELY to get this virus treated, after having Obama Care BCBS tell me I was S.O.L…….So a few months after getting the INS, I go in with a longstanding issue, and they shoot us down. Not gonna cover. I got the email, as did my Dr’s office. The plan then is to begin the appeal process…..which I’m sure you know can drag out. My Dr knew I was “very early cirrhosis” , and that a long appeal was not going to be good for my long term health. Three days after the denial, I get a letter saying I am approved. The Specialty Nurse for the Aetna Pharmacy tells me, then, on the phone that my Dr spoke to Aetna’s Chief Advising Phycian and, in her words, “went to bat for me”…..So here’s the thing Kim. I can tell that my Dr is a very moral decent man, a nice guy, great Hepatoligist, and I’m sure what happened is that they cut a deal on the time. He obviously believes that since my Count was at like 2mil, and my cirrhosis was super early that we could beat this in 12……..Why won’t he tell me that story? Well, it’s an unusual way for a Dr to operate (pardon the pun), almost out of line. But I know he likes me as a person, and I actually trust him . His latest word (and final, according to him) on the issue is this: “you showed day 18 numbers, that tell me nearly to a certainty, that if you take your meds on time, lots of H2O, same time every time, and don’t abuse, that you will be free in 12 weeks”…… That’s verbatim, Kim, copied it from email. I believe him…..but don’t want to make a terrible mistake, but also don’t see much other choice.
Hi Dave. That is indeed a very difficult situation. I do believe it may be possible for you to appeal on your own, without your doctor. But I don’t honestly know. It is also possible for you to purchase generic versions of the Sovaldi+Daklinza for about $1500 USD for a 12 weeks supply. And probably the ribavirin too. So you could extend your treatment to 24 weeks if you wanted. One way to get the generics is through the worldwide Redemption eTrials being run through the Fix HepC organization in Australia. More info is here: http://fixhepc.com/home/redemption-etrials.html The meds will be shipped to your doorstep and are the real deal. Many people have been going this route to get cured.
Well, I wanted to send a missive where I didn’t dwell dwell dwell on my hep c treatment. So I sat down and started writing what turned out to be several paragraphs…..It was good, creative and funny, talked about the misfortune that led me to writing, but also sadly to hep c as well. I touched on my mentor, a factastic professor and literary novelist, who worked me an invitation to audit his masters program.
Then the page disappeared……….AHHHHHHH…….God I hate that, and I don’t want to start all over again now. I really hope to read your stuff, and hear your fascinating story. But for now, did you go through anemia? What did you use to help? Have you heard that E & C are good?
I did want to say that all your info and advice was very well taken. I am going to have another talk with my Dr. …I have been respectful to him, but I’m no shrinking patient, if you will, and he needs to understand that even if this protocol works, I have the right, every right, to know all options, and the entire story of how he came to this particular treatment plan.
Thanks so much again.
I had a big problem with the ribavirin-induced anemia during treatment. And unfortunately, I am still struggling with serious anemia (plus low hemoglobin and low red blood cells) 10 months post-treatment. I went into treatment healthy (apart from having Hep C), and have never recovered that health, or any decent health, since finishing treatment. (Although at least I no longer have Hep C, so that’s something!) But my case is probably unique. Most people pull out of the ribavirin anemia 2-4 weeks after stopping the ribavirin.
Yes I have absolutely heard of Vitamin C & E being useful for offsetting the hemolytic anemia of ribavirin. Most of us, though, really don’t want to take any supplements or even vitamins while on treatment with the new drugs in case it interacts with the drugs in any way. Even if a doctor or pharmacist says it won’t, how can they know? These interactions with vitamins and minerals have probably not been tested.
Good luck Dave! 🙂
It’s great to read about u….
My father has been dedected wit some problem in liver
Need to discuss with u
My email id is catchrahulmangla@Gmail.com
My mobile no +919917061177
Please tell me your mail I’d. .
My father fibroscan scan score is 8.4
Hello Rahul. Thank you for stopping by my website. Since I am not a doctor or any kind of medical professional, it would be best if you or your father contact a doctor about his liver problems. If it turns out that your father has any kind of hepatitis, here is a good online support community that can help with information: http://forums.hepmag.com/
Hi Kim, and thank you for sharing yourself and your story. It is soooo familiar. Well I guess in the disease part more than the award-winning writer part…. I have been quite anxious to start the harvoni that’s been prescribed as soon as my insurance approves it. I can’t wait to meet me! That’s my refrain. Now I’m wondering what it will do to my already oddly twisted immune system. I developed some reproductive autoimmunities in my 20s and have been sort of vaguely inflammatory till it settled into the veins of my lower extremities about 10 -15 years ago. I think I have cryoglobulinemia vasculitis. None of my docs in Chico, California had ever HEARD of it at all. That does not inspire confidence. I, on the other hand, have been studying everything from physiology to biophysics as I tried to understand the vagaries and mysteries of my own body all these years. So I’ve kind of been studying for this my whole adult life. I’ve been making information packets for them with journal articles accompanied by descriptions of my symptoms. Mostly because none of them has allowed a coherent conversation to take place. The specialists are the WORST!
I’m wondering if there may be a specialized treatment protocol for folks with cryoglobs. I’m sure my docs won’t have anything like a clue. I’m in prelim stages of trying to get in contact with the Bay Area Hep Research group at UCSF. What my body wants is to have someone take an ultrasound wand to my legs and stir up those globs, followed immediately by a complete transfusion. Vacuum that crap OUT! I had the experience of a venous ultrasound on my legs 6 weeks ago. Still getting over it. A transfusion would’ve felt so nice, aaaahhhhhh. Better than feeling like a sausage internally encrusted with broken glass at least.
I’m writing you really to ask what insights you may have come across about the immunology of the cure? How are you doing these months later? Have you already written about this somewhere that I should read?
Dear gaia so,
thanks for writing. I completely understand your concerns. I myself do not have cryoglobulinemia, so I never really researched it. But cryo is absolutely an EHM “ExtraHepatic Manifestation” of Hep C. Here is a list of EHMs: http://hcvadvocate.org/hepatitis/factsheets_pdf/extrahepatic.pdf
It is amazing to me that most doctors, even liver specialists!, do not know about this and will actually deny it. We really absolutely must become our own doctors in this.
As for where to talk to other people in similar situation, I would suggest the Hep Forums: https://forums.hepmag.com/
It is a very active online discussion group with a lot of knowledgeable people, including some nurses. And most people post anonymously. Near the top there is a menu bar that has the word “search” in it. You can click on that and type in “cryoglobulinemia” and find quite a few postings on this subject.
In my own case, I certainly got cured of Hep C quite swiftly and effectively with Harvoni (as most people do), but it appears to have triggered a rise in a previously undiagnosed condition (an EHM) that I went in to treatment with. And that condition is serious. Have not blogged about it yet because I am waiting for the outcome, but am working aggressively on non-toxic health remedies.
It is hard to know what to advise. Harvoni will certainly cure you. And that in itself seems worth the price of admission. And most people do not seem to be harmed by Harvoni. But I think people who have already developed EHMs may be at more risk… One possibility is to find a way to get Epclusa – possibly in generic form overseas. From what I am hearing, people are not reporting problems with Epclusa. Good luck! 🙂
Hi Kim…you answered my question on the hep c forum and I really appreciated it. Your story and mine are very similar as to how we contacted hep C. When I did find out I had it I was depressed for weeks (not sure why since I knew it was curable). I guess I could not accept the fact that I got it the way I did. Anyway, i will be starting a new drug called Myavet (?) soon. For years, I’ve always told my doctor i was tired and he attributed it to not enough sun…. or some other thing. I also had pain in my upper leg (one leg only) for over a year. Saw 5 specialists and other than some old-healed fractures (did not even know I had) could not find anything. When he sent be back to the first specialist I saw that was when I said “enough is enough”. For years I also had IB. Both of these have gone completely away…now, I am wondering if it had anything to do with Hep C. I also bruise weirdly and easily. Anyway, I am looking forward to starting the new drug, albeit a little scared (of what I am not sure) and just wonder if I will feel differently after I am cured….meaning better, more energy, less tired…. it seems that a lot of people have had positive results and that is what I would like.
Hi Darlene. Yes, I believe you will feel better on all of the fronts you mention (more energy, less tired, no longer bruising easily) after you are treated and cured with one of the new Hep C drugs. However, as many people on the Hep C forums have noted (https://forums.hepmag.com/), health recovery is not always immediate after the virus has been eliminated because other secondary conditions have developed in our bodies over the years. And they may take a while to unwind. Still, that work cannot even begin until the Hep C virus is gone. So you are taking the most important first step in your health recovery journey by getting treated with one of the new drugs.
Do be sure to get hard copy print-outs of all your lab results from here on out. You will want to look at these yourself and not just rely on a doctor tell you if your numbers are ok or not.
Good luck to you! 🙂