HCV

“You should wear with pride the scars on your skin, they’re a map of the adventures and the places you’ve been.” –Poi Dog Pondering

This is the story of a friend I will call Mary.  The name isn’t real, but the story is.

Mary is 33 years old, recently married, and has worked for the same employer for several years.  She is so well loved that she recently left to take another job, but it didn’t work out – and her previous employer took her back on the spot.

Mary wasn’t always a contributing member of society.  She used to be a drug addict.  She lived on the streets in cities throughout the west.  She did things we don’t like to think about to support her habit.  She was a lost soul. Few people who go to the lengths Mary did ever make it back.  It was nothing less than a miracle that she got clean, and remains clean five years later.  She has gone from being an outcast, someone who was nothing but a drain on society, to becoming a contributing and responsible citizen.  Looking at her today, you’d have no idea where she came from.  And no one is more aware than she is of the gift she has been given.

Six weeks ago, Mary was diagnosed with HCV.  With her background, this is hardly a surprise, but it took Mary by surprise.  Like many of us, she thought she had left her past behind.  She had no idea that a quiet disease, a legacy of her lost years, was attacking her body.  She went to the doctor because she felt tired all the time.   The doctor ran tests, and the ongoing price of her disease was revealed.

I talked to her the evening of her diagnosis.  She was angry, terrified, and confused.  She couldn’t stop crying.

The pattern is familiar: We want to blame someone for our misfortune, but no one did this to us but ourselves.  We curse ourselves for what we used to be – sometimes forgetting that we are no longer the person who did those things.  We demand of God how He could let this happen to us, as if by changing our present we should be spared the consequences of our past.  I know – I have done it.

Over the following weeks, Mary talked at length with her friends, her husband, her doctor, her spiritual adviser, and people like me who had gone through this process before her.  She came to a place of increasing acceptance.  She learned that death was not imminent, and that life would go on.  She may even be coming to terms with the idea that just because the effects of her former life continue to manifest does not mean she is still that person.

Those who caught HCV through no fault of their own have many issues to deal with.  For those of us who caught the disease through our own actions, actions we have tried to put into the distant past, the issues are different but no fewer.  What it boiled down to for me was this: Did I have HCV because I deserved it?  Was I still being punished for a former life that I seemingly could not have avoided, and through some miracle had now left behind? Were my former sins too horrible to be worthy of forgiveness?

The truth is that like the other scars I bear, HCV is part of the cost of the road I took. Whether that road was unavoidable or not, I traveled it. Now I travel a different road, but my experiences and scars will remain with me forever.

Mary will begin the interferon treatment later this month. She is anxious to put HCV behind her. I wish her luck – and will be one of the many people who supports her as she undergoes a treatment that often seems worse than the disease.

AP reports that two new drugs are being tested for treating HCV.  Initial studies suggest that adding these two may increase cure rates from 40% to 75% for the most common type of the virus, and decrease treatment duration by as much as half.  For those of us who have been through the treatment – some more than once– it’s gratifying to know that future HCV patients may not need to go through what we did.

Emily Raw photo: “Lara injects her leg weekly with interferon.”

In 2001 I got health insurance again, this time through Kaiser Permanente.  My doctor encouraged me to undergo interferon treatment, which can in some cases cure HCV.  I agreed.  I was assigned to a wonderful Physician’s assistant who had been one of the pioneers in interferon treatment.  She followed my case closely, met regularly with both me and my wife, and managed the medical aspects of the treatment admirably.

What followed was seven months of Hell.  Often I read that the interferon/ribavirin combination treatment causes “mild flu-like symptoms.”  Bull.  It kicked my butt – and it has kicked the butt of every person I know who has done it.  In six weeks I had lost 35 pounds because of nausea, and was living on a diet of protein shakes and plain noodles.  I couldn’t walk up a flight of stairs without help.  My red and white blood cells dropped dangerously, and my dosage levels were reduced to try to compensate.  there were days when I was too tired to get off the couch.  My PA would ask me if I was depressed.  I would answer, “I can’t physically get up off the couch – what do you think?”

I underwent weekly blood tests to monitor my blood counts, and monthly viral load tests to ensure that the treatment was working.  At three months the viral load was significantly reduced.  At five months, I tested virus-free.  At six and seven months there was no resurgence.  The side effects of the treatment were so awful that my PA suggested we stop.  I readily agreed.

With the treatment concluded, my blood counts gradually returned to normal.  It took months for me to start to feel human again.  My 3-month follow-up test showed that I was still virus-free, and I began to hope that this was really over.  My wife (then my fiancee) and I got married.  It looked like HCV was a thing of my past.

My six-month test, however, showed that the virus was back, and my PA suggested I do another round of treatment.  This time we would use the medication full-strength, and the side effects would be managed with other medications.  My wife and I hoped that, having already survived one round of treatment, we would find this round easier.  Fantasy.  At 4am the morning after my first treatment, I woke my wife because I felt colder than I had ever felt in my life.  (This was in southern California; I grew up in northern New England!)  I shivered uncontrollably, and my teeth chattered.  Blankets were of no help, nor were extra clothes.  Finally my wife lay on top of me under the blankets, and her body heat finally helped to warm me.

It was another six months of Hell.  My blood counts dropped, and I injected myself several times a week with medications to try to raise them.  I did my treatments on Friday, and if I was to go anywhere on Saturday, someone would have to help me walk.  On a food week, I was able to put in six hours of work.  And it wasn’t just Hell on me, it was Hell on my new wife as well.

It is worth mentioning that Kaiser sold me prescriptions for $25 each.  My five prescriptions (two for the treatment and three to manage the side effects) cost me $125 per month.  The label for each prescription had another figure on it; whether it was the normal retail or the cost, I don’t know, but it valued those five prescriptions at over $3,000 per month.  I will thank God for Kaiser Permenente every day of my life.

The viral load dropped to zero again, and it stayed there.  At six months, my PA again suggested we stop the treatments.  Much as I feared the virus returning, I was more than ready to stop.  My wife, too, was ready for me to stop.

The three month follow-up test again came back virus free.  When the six month test came, I waited impatiently for the results.  It, too, came back clean.  So did tests at 9 and 12  months.  The doctors pronounced me cured, but suggested that I continue to get tested for five years.

I had lost two years of my life, but my Hepatitis C was gone.

Epilogue

My four-year test was due after my wife and I had moved to Utah.  I had a new GP, and I talked to him about my former condition, and he agreed that the test should be run.

The following Friday afternoon, while I was in a class, the nurse from that office called my wife to give her the results: the test had come back positive.

By the time my wife reached me, it was after 4pm on Friday afternoon.  The doctor’s phone was busy.  My wife and I sat in my car and prayed., while I debated: would I do that awful treatment again?  I sincerely doubted it. But I did not want to worry about that through the weekend without going over the results with the nurse.

At 4:55pm, I finally got through to the doctor’s office and spoke with the nurse.  She read the test results to me.  They were positive.  But something about the numbers didn’t make sense.  Finally I realized why: this small-town doctor’s office didn’t understand HCV, and they had run the wrong test.  They tested for HCV antibodies which, as someone who had HCV, I will always have.

My wife and I breathed a huge sigh of relief, and they ran the correct test the following week.  It came back negative.  And so did my 5-year test.  I can never give blood or donate organs, and I will always have a pre-existing condition that makes me “uninsurable” for health insurance.  But I am officially cured of HCV.

Meg Heckman, author of a 6-part series on her personal struggle with Hepatitis C in the Concord (NH) Monitor, now has a blog: The Journalist and the Virus.  She refers to HCV as “the biggest epidemic you’ve never heard of.”

(That’s me about 1981.)

In a recent 6-part series, reporter Meg Heckman shared her moving struggle with Hepatitis C.  (You can find the series here.)  Ms. Heckman contracted the disease through a blood transfusion at birth, and one of her personal struggles was to avoid being labeled with the stigma of most HCV patients, who got the disease from using drugs.

HCV is a deadly but slow-acting disease contracted through blood-to-blood contact.  Blood transfusions and IV drug use are obvious sources.  These days, blood is screened for the disease, but before July 1992, when testing was implemented, risked getting the disease.  But more casual contact can also spread HCV: shared toothbrushes or razors, unsanitary tattooing needles, and so forth.  HCV is not easily transmitted through sexual contact.  The Mayo Clinic says that in a long-term, monogamous relationship in which one partner has HCV, condom use is not required.

I have never written publicly about my own experience with HCV.  However, it seems I have a responsibility to speak out.  Unlike Ms. Heckman, it didn’t get it through a blood transfusion.  I got it the way most of us did: through drug use.

I had been clean and sober for two years when, in 1987, testing performed during a routine physical examination revealed that my liver enzymes were abnormally high.  Through a series of blood tests ordered by a dedicated Physician’s Assistant at my HMO, various causes were ruled out.  By process of elimination, I was diagnosed with “non-A non-B hepatitis.”  At that time, there was no test for it, and there was no treatment.  I was warned to be careful to avoid transmission to others, and to watch the liver enzymes over time.

In 1989, my employer switched providers in order to cut costs.  My new HMO, rather than having its own providers, contracted with doctors to provide services.  I was assigned to a doctor who specialized in sports medicine.  I hate sports.  It was not an ideal match.  When the time came for my annual liver enzyme test, my doctor vociferously declared that I did not have hepatitis and should “quit worrying about it.”  In those days, I trusted doctors, and I took his advice.  For a decade, I believed that I did not have HCV.

One day in 1999 I happened to see an article in a nursing magazine about HCV.  (My landlady was a nurse.)  The statistics listed in the article were frightening, particularly since they suggested that the odds of my not having HCV were slim.  I was just finishing up college on the 21-year plan, and didn’t have health insurance at the time.  I found a county clinic that performed HCV testing for a reduced fee, and three trips to the ghetto later my diagnosis was confirmed: I had HCV.

The clinic doctor gave me advice based on the common wisdom of the time: don’t smoke, drink, or take drugs (I didn’t), eat healthy, and don’t have unprotected sex with an uninfected person.  Over the previous decade I’d been married and divorced, and had a number of monogamous relationships.  The responsible thing to do seemed to be to contact each and every one of them to warn them that they might have HCV.  Few of them were pleased to hear from me.  To the best of my knowledge, none of them had contracted the disease.  (At least one refused to get tested, and suggested that I should have left well enough alone.)

How do you live the single life with a disease that you have been told might be transmitted sexually?  Do you tell prospective partners up front?  (“You’re a nice guy, but…”)  Do you fail to mention it until sexual contact seems likely?  (“How could you let me invest so much in this without warning me you had a disease?”)   Fail to mention it entirely?  (I never did that, but some do.)  There are no good answers.  Fortunately, I found a prospective partner whose father had contracted HCV through a blood transfusion.  She had cared for him and never contracted the disease; my having HCV didn’t frighten her.

She is now my wife.