Hepatitis C, Harvoni, week one

Newly sober, 1997

It was spring of 1997. I was just a few months sober, in a women’s clinic in Santa Monica, because in those days there weren’t that many places that you could get a free HIV test, and an HIV test seemed like an urgent piece of housecleaning. The nurse took whatever bodily fluid they took back then, and then gave me the talk: had I thought about what I would do if I tested positive? Did I have a support group?

The answer, with a gulp, was no, and no, but in the week to come I thought about it a lot. Basically, I started to put my affairs in order, even though I didn’t have very many affairs to organize. Someone to adopt Boris the cat. That was about it.

I had this heavy, heavy guilt and shame that I imagine is typical of many of us when we get sober. I’ve never been a religious person, but I was looking at the situation very much in Old Testament terms, and I was pretty sure I was gonna test positive, not so much as a consequence of the life I’d led but as punishment for it.

It was a really long and difficult week.

I did not even know about Hepatitis C at that time. The disease had only been discovered in 1989, although it had been around much longer. It was a junkie thing, I reckoned, and I wasn’t a junkie. It was hard to get tested for.

Three Blocks East of Easy Street

“There ain’t no sin and there ain’t no virtue. There’s just stuff people do.” John Steinbeck, Grapes of Wrath

2002, living down in Long Beach, a starving artist struggling to pay rent. In those days I went through girlfriends pretty quickly, or maybe they went through me, it’s hard to say. Some of these women were literally straight out of the psych ward – this is not hyperbole – and I was not much better myself, so as each ended and/or new one began it was off for another barrage of tests.

My previous girlfriend was an ex-crack-addict ex-stripper who worked briefly for Heidi Fleiss. She assured me however that she didn’t whore for Heidi. She just used the call-girl thing to get her foot in the motel-room door so she could rob ’em at gunpoint. She figured an upscale clientele like that could afford the money but not the scandal. She seemed safe. I’d never heard of anyone catching an STD from pointing a loaded gun at someone.

We broke up and I started up with a new girl. I drove my beat up 1974 Dodge Dart Swinger up to 20th and Long Beach to get my blood drawn at the Beach Mobile STD Van parked in front of the 99-Cent-Store. I filled out a bunch of Health Department paperwork then waited under the awning and read a few Spanish language pamphlets on abstinence.

My friend Tony (who died last year when his body just stopped working after a lifetime of drug abuse) suggested I had syphilis, for reasons I do not recall, but whatever they were it reminded him of some of his symptoms, and he’d had syphilis.

I didn’t take well to this suggestion. It seemed like such an old, dirty disease. It wasn’t like herpes or clap. It didn’t sound like the kinda thing you’d catch from having too much fun with modern women. It sounded more like the kinda thing old men used to get from worn out, lowdown, rundown, cheap broads who were looking to make rent after spending all their money on booze; you got it in tilting clapboard rooming houses, you had to be near a railroad track, maybe hoping to catch a freight train to the next town and the next job yourself. You needed to be a character in a bleak pulp fiction novel written by an embittered and impoverished alcoholic like Jim Thompson. You had to be lowdown and desperate in the first place to catch something as lowdown and desperate as syphilis.

I was a nice bohemian white boy from a good, proper, dysfunctional upper middle class family; I had a university education; I was an artist who did official shows in official art galleries and in coffee shops. Important people heaped praise on my work, and other important people said terrible things about it, and the controversy looked impressive in my press kit. I myself used to be an important person, or at least a person of minor importance and some notoriety back in the punk rock days. And my ex, who probably gave this mystery ailment to me, she came from a nice family too, and used to play in a goth band, and in her death rock hey-day she’d done drugs and had sex with a lot of famous guys and a decent number of famous women. Okay, yeah, after that she was a stripper and a crackhead and an armed robber; she was angry and bitter and had body image issues and racial identity issues and incest survivor issues; she hated herself and hated men – she wasn’t perfect. But neither was I.

My current romance was with a fetish model who lived on the East Coast. She owned a condo in Maryland, and lived in a single room of it, just off the kitchen, like a burrow. It was a big condo, and all the other rooms were empty. She used one for bondage photos. The rest she was frightened to go into. There was something in her eyes that spoke to me, some sort of passion or desperation. My friend Myriam told me it was insanity, and I should stay far away. “She is hot, though,” Myriam admitted. Myriam was a lesbian. We had the same taste in women.

“All the women hate me and all the men want to fuck me,” my girlfriend would say. This had become her identity, and she was proud of it.

She had been a tweaker, but claimed to be clean when we met. She was struggling with it, though, and after a while she was back, snorting ritalin. I knew things were getting bad when she called me from someone else’s closet, where she had been hiding for several days. It quickly escalated to a lot of drugged out s&m scenes with random strangers from clubs. Blood may have been involved, and it seemed pretty sketchy.

One night this conversation took place:

“I think you should get tested,” I told her.

“I don’t want to get tested. We’re all gonna die anyhow. You just think I’m a drug addict skank.”

“You share needles. You have unsafe sex with other iv drug users. I read the infection rate is 70-90%.”

“I don’t give a fuck. You’re always comparing me to other people. I’m not like other people. I’m not like any girl you’ve ever met. I don’t give a fuck about other people’s infection rate. Stop comparing me.”

“I’ll tell you what. I’ll get tested first.”

I said this not because I thought she might have given me hep, and was worried. It’s not a sexually transmitted disease. I said I’d get tested to prove a point, and maybe nudge her in the right direction, because if anyone was likely to have caught it, I reckoned it was her. I never really considered that I might test positive. My IV drug days were long, long behind me.

And that’s how I ended up at the Free Clinic near my place in Long Beach, three blocks east of Easy Street, next to a church where they handed out Fruit Loops and other breakfast cereal to mostly Asian immigrants. I filled out more paperwork. The nurse checked the box labeled “indigent”. “Indigent,” I thought. “All this time I thought I was bohemian.” I sat down and read a farm-workers pamphlet telling me how since I was over 40 I was entitled to special anti discrimination rights. One delusion after another quietly dropped away.

It was a weird scene. The Doctor, or nurse practitioner, who was around my age, and hot, was having an oddly personal conversation with me about what kind of music and books I was into, first date conversation, while she was holding my dick with a latex-gloved hand investigating for I’m-not-sure-what, and the whole thing had a right place, wrong time (or maybe it was wrong place, right time) vibe that left me confused about everything except that I was suddenly pretty sure I was dating the wrong person. Once I had my pants back on and she’d drawn blood, she gave me the same talk the lady at the Women’s Health Center in Santa Monica gave me. My answers hadn’t changed much.

I’d been sober a few years and wasn’t wracked with the same shame and guilt that hit me so hard in early sobriety. I also hadn’t really been much of an IV drug user – those days were short, and at the beginning of my illustrious career as an alcoholic – so I didn’t have a week of morbid certainty that I was going to test positive. I just went about my day-to-day business of trying to hustle up rent and figure out what I was gonna do for Christmas. I was surprised when I got the call to let me know I had Hep-C.

Another conversation with my girlfriend:

She said “You think I gave you the Hep-C, don’t you?”

“Who knows, baby. What does it matter? I’ve got it.”

“I’m really worried about this Hep-C thing. I’m scared to find out I have it.” And so she went out and got loaded and got laid. “What else is there to do if I’m stressed out? I need my release. Besides, why else would anybody go to a club except to get loaded and get laid?”

Our relationship was going down hill.

Christmas of 2002. I was feeling genuinely poisonous. The stuff coursing through my veins that kept me alive was full of something else that was killing me, and that could kill you too if you somehow managed to get my blood in your veins. In addition to the Hep-C virus, I’ve got Catholicism in my blood, so I know how to beat up on myself and feel penitent. If I wasn’t so loathe to draw attention to myself, I’d probably walk around in a sackcloth and ashes. In my mind, the main difference between me and Job is that unlike Job, I’m pretty sure I deserve it.

The last I heard from the girlfriend was January 2003. She was back in town for a porn shoot.

“I just want you to know I got my test results back,” she screamed into my voicemail. “I’m clean, no thanks to you, so FUCK YOU, you asshole.”

Chronic Hepatitis C

Hepatitis C, or HCV, is the junkie disease. Infection rate amongst IV drug users is somewhere between 60 and 80 percent, although it’s hard to know for sure because this is a population that likes to stay in the shadows. It’s estimated that there are nearly 3 million folks infected with HCV in the United States.

Hep C was first noticed in the mid 1970s, but it wasn’t until 1989 that the virus was actually identified and named hepatitis C, or HCV. Up until that time, it was known as non-A, non-B hepatitis. Until the virus was identified, it couldn’t be measured, and until it could be measured treatments couldn’t be measured, because all you could gauge was their effectiveness treating the symptoms, and chronic HCV is generally asymptomatic until it’s nearly too late: HCV is the most common cause of cirrhosis and liver cancer in the Western world, but once it gets to the advanced cirrhosis or liver cancer stage, you’re pretty much toast.

I almost certainly caught HCV during my brief iv drug use days in my late teens, at the beginning of my practicing alcoholic career. Austin Texas was a small city, and the punk scene in it was a small crowd, so even if the iv drug users were a large part of that small crowd, it was still a small group of people. I knew them all, and the number of folks from that scene who turned out HCV positive is huge. I’m just another one of them.

Left untreated, the prognosis pretty much sucks. The problem is that until things get really bad, people who are HCV positive don’t really have any signs that they have it. I got tested not because I had symptoms, but because it seemed very possible given the life I’d led, and I had access to a place where I could get tested. Free clinics in Long Beach were much more accessible than the free clinics in LA, especially before the Governator slashed funding in Jan 2004. There was a tiny window for diagnosis, but treatment wasn’t yet available.

Sixteen years later there is effective treatment. Sixteen years later I have health insurance, in fact I’ve specifically designed my health coverage to enable treatment. But that also means I’ve lived another sixteen years since diagnosis, and probably 40 years since infection, with HCV. For nearly the first twenty of those years I drank heavily and generally abused my liver. This means despite 21 years of good clean living, my liver is a little bit of a mess.

2006. Echo Park. Pegasys

Side effects include headache, feeling tired, depression, trouble sleeping, hair loss, nausea, pain at the site of injection, and fever. Severe side effects may include psychosis, autoimmune disorders, blood clots, or infections.

Pegylated interferon alfa-2a, brand name Pegasys was what they used to treat Hep-C back in 2006. It was nasty stuff involving a weekly injection under the skin; people I know who went on it would schedule their injections for Fridays because it would leave them sicker than a broke dick dog and contemplating suicide for a few days, not in any shape to work.

Being a bohemian artist in my 20s was not a bad life, but being an indigent loser in my 40s was not really working so well, so I’d finally broken down and gotten a job, and with that came health insurance.

The doctor said that pegasys had a significantly less that 50% success rate with my genotype. Another round of bloodwork showed that my liver function, while nowhere near right for a normal person, seemed fine for someone infected with Hep-C, at least at the moment that the blood had been drawn, which is all those tests can tell. There were new drugs a few years away from approval, wonder drugs, with a much higher success rate and not nearly the side-effects. He said to wait.

Round and round she goes, and where she stops nobody knows

HOW BAD IS U.S. HEALTH CARE? AMONG HIGH-INCOME NATIONS, IT’S THE WORST, STUDY SAYS

Newsweek reports “the Commonwealth Fund has rated the U.S. health care system as the worst among the 11 developed nations it analyzed as part of an evaluation conducted every three years.” We also came in last place in 2014. We rank last in access, administrative efficiency, equity and health care outcomes, but highest in cost.

I stayed sober. I stayed at my job. I stopped smoking. I started running again, and then I started running ultramarathons. I ate well. I took care of myself. My bloodwork held steady.

I hated my job. I wanted to quit, but I also wanted to get treatment for Hep-C. The new wonderdrugs had hit the market.

We’d changed insurance companies at work – six times in twelve years. I couldn’t keep the same doctors. I’d start the process by making an appointment to see my primary care physician. They could fit me in in 2 months. I’d go in. They would weigh me. They would take my pulse and my bloodpressure. The doctor would stick a finger up my ass. They’d say “whatever you’re doing, keep doing it, you’re in great shape“. I would tell them I want a referral to a heptologist. They’d take my $60 copay and in a month or so, I would get a bunch of papers with all the referral approvals. I’d call the heptologist. They could see me in 3 months. I’d go see the heptologist and they would talk to me for five minutes and then order bloodwork. I’d get the bloodwork done and make a new appointment. They would be able to see me in 3 months. I’d go in with the bloodwork, and they would say “we need a fibroscan”. I’d wait a month or so for the approval and then make an appointment for the fibroscan, in three months, and somewhere in the process I would either give up or else my insurance would change and I’d have to start over with a brand new set of doctors.

I was perfectly healthy. There seemed no urgency, other than I was getting older. One thing was clear: I was never going to make it through the end of a treatment cycle the way my insurance kept churning. That seemed to be part of the design. Stick a finger up my ass and charge me $60, like I’m a john with a butt fetish. Not enough to be an ass fucking, just a mini violation.

Gilead, birthplace of the Prophet Elijah

Gilead means hill of testimony in the Bible. It’s a place, a mountainous region, in Jordan, and first appears in Genesis 31:21-22: “So he fled with all that he had; starting out he crossed the Euphrates, and set his face toward the hill country of Gilead”

The prophet Elijah lived in Gilead. He was the primary defender of Yaweh, the Old Testament God, back in the day, doing battle against Ahab, against Baal, and against the wicked Jezebel herself. The Jezebel Spirit is called the “nastiest, evil, most disgusting, cunning, and seductive spirit in Satan’s hierarchy”. Jezebel is associated with prostitution, and makeup, and, of course, the worship of false idols and renunciation of God that goes hand-in-hand with lascivious sex, eye-shadow, and cloying perfumes that hide the musky funk of sex. For a long time, there seemed to be a whole lot of Jezebel Spirit in my life and the lives of my lovers.

Gilead is also the name of a drug company founded in 1987, and this company makes a drug called Harvoni, which is one of those new wonder drugs for the treatment of Hep-C.

It’s not a weekly injection but a daily pill. The cure rate for my genotype is 95%. The side effects are minimal. An ultrarunner friend ran San Diego 100 while on it. She said she felt dizzy shortly after taking the pill at mile 90 or so of the race, but I feel dizzy at mile 90 of a race no matter what I take – a pill, a GU, PB&J…

The stuff ain’t cheap. Full retail price is a little over $1,100 per pill! But anyone who pays full retail got a problem in the head, like Crazy Gideon, and for reasons that I don’t understand but am extremely grateful for, Gilead is subsidizing the copay for people like me, which means a $94,000 12 week course of treatment actually becomes doable. This could save my life.

Harvoni Treatment, Week One

Day 1

It’s a foggy morning walking in Silverlake, and the smell of damp trees and flowers is beautiful. Deep breaths. I remember when I started running again 11 years ago, around the reservoir and in Elysian Park, my lungs just clearing after having quit a two pack a day habit, sense of smell coming back, startled and delighted by this world of smell. Having a sense suddenly open up like that brings a huge sense of newfound freedom. Shaking an addiction does, too. It felt really great to be alive. It feels that way today, too.

Day 2

More of a hike than a run up Acorn Trail and then east on the PCT. First time I headed in this direction was May 2013. I’d caught the flu from my sister when I went to Colorado to run Quad Rock 50. After three weeks of taking it easy I headed up to the mountains, against all advice. “Stay away from elevation until your lungs are cleared” was the suggestion I was not following. I started the run at Inspiration Point, headed up the PCT past Blue Ridge campground, past Guffy, past the Acorn Trail, and into new territory for me. The trail headed gently down for several miles. I passed a few PCT thru hikers on their way up from Mexico. At some point, the land turned rather abruptly into desert. I was feeling good and ran hard down a long downhill.

Suddenly my heart started pounding and I was short of breath. I stopped to let it pass. It didn’t. I turned around and headed back up the long climb, as gently as I could. The thru-hikers ahead of me were making much better time than I was. Every quarter mile or so I would have to stop, sit down, and try to meditate or something to bring my heart rate back down. It took three hours to get the five or six miles back to Guffy. There were moments when I genuinely doubted I would make it. I was afraid I was going to have a heart attack. Once I hit the road I started stumbling down it rather than the trail, hoping I could catch a ride, which I did. I spend another half-an-hour in the truck at Inspiration Point.

This is called tachycardia, and tachycardia is apparently an occasional side effect of Harvoni. That day was terrifying, and I did not want to experience it again. I took it even easier than usual on the PCT.

Back in town. Julian the Cat needs new cat litter. It’s practically a crisis. We’re bachelors, and sometimes it takes us a while to getting around to stuff like this. Longer than it should.

Older man in the parking lot of Trader Joes in La Canada waves his finger at me. “You’re not very good at parking,” he says and shakes his head. He continues walking, looking back at my car. “I see your license plate is upside down too,” he calls out. “That’s not a good thing.” I’ve just come back from a nice run all alone up on the PCT near Wrightwood. It’s a bummer I’ve disappointed this guy, but he’s being a buzz kill. I don’t have a clever response. “Leave me alone, please” I call out to him. “Ok. I will. You have a nice day now!” he calls back. No wonder I don’t like people.

He looks kind of like Rush Limbaugh or Glenn Beck – a doughy, white, totally nondescript 65 year old Republican guy. His demeanor is more Ned Flanders, but an admonishing Ned Flanders. I’m pretty sure he would be horrified to know that I run ultramarathons and am on day two of my Harvoni treatment. People don’t usually get Hep-C doing the sorts of things this fastidious pillsbury approves of. Honestly, it’s kind of a miracle that I am driving a brand new car, making car payments, employed, with good health insurance, and can run in the mountains, even if I do it in a way that is really excessive, even if my front license plate is upside down, even if I’m not very good at parking. Ned Limbaugh or whatever this little busy-body’s name is would be mortified if he knew that there were such people in La Canada Flintridge, even if we are just passing through on our way from the mountains down to Highland Park.

Day Four

It’s 102 degrees in Griffith Park when I get back to my car, a steamy morning in early April. The run felt good. The pharmacist calls – well, actually a nurse practitioner. She wants to check on when I started taking the medication and make sure I am aware of what the side-effects might be, go over some details, etc. She is surprised that my Dr. has made no effort to call me with info on my genotype, viral load, or otherwise check in on me about the medication. My Doctor is useless. Her call reminds me that I need to call them again and ask for that stuff. I’m not surprised.

She tells me something I would never have thought of on my own: make sure I change my toothbrushes, razors, etc, frequently. Hep-C can live outside the body on that stuff for 3 weeks. I could clear a lot of the virus in that amount of time. I do not want to reinfect myself. This would have been handy info to get from my Doctor.

A cop has a guy in handcuffs on a sidestreet off Eagle Rock Blvd. They are both smiling and laughing, relaxed, like they are old friends. This is weirdly heartwarming.

I have a couple of books I like to start each morning with. One is a book of Buddhist quotes for each day, the other a 12-step version of the same. Today’s 12 Step book says that sometimes we find ourselves in situations that appear to be unsolveable crises. We become obsessed with them, and engulfed in despair. The reading reminds me that there is some good in everything, even the darkest troubles, and what I need to do is learn to find that goodness and concentrate on it.

The Buddhist reading takes a slightly different approach with a quote from Pema Chodron: “Until we stop clinging to the concepts of good and evil, the world will continue to manifest as friendly goddesses and harmful demons.”

Whatever I do, both say, I need to stop fixating on all the bad shit.

I skipped yesterday’s reading. It said “Instead of allowing ourselves to be led and trapped by our feelings, we should let them disappear as soon as they form, like letters drawn on water with a finger.”

Okay, so 102 degrees is a little warm for the beginning of April, but it’s still a beautiful day, and I might be wilting a bit in this heat, but I can still run. Griffith Park is 4,200 acres of often pretty rugged land, even if on the edges of it are some true iconography: the Griffith Park Observatory and the Hollywood Sign. In the scrub behind all of that are deer, coyote, bobcats, a mountain lion, and some rugged little stretches of singletrack. I’m fortunate that it’s here, and that I can run in it whenever I want.

Day Five

On day five, I learn that I have cirrhosis of the liver.

Here’s how it happens. The nurse practitioner calls me again from CVS. I’m surprised that this giant pharmacy, acting on behalf of my insurance company, seems much more interested in my health than my doctor and his staff, who thus far seem completely disinterested in the situation. The folks at CVS are also a little surprised. They tell me that I seem like an intelligent, well informed guy who has done his research, so it is startling to them that I cannot tell them what my viral load is, or my various blood markers, or even my genotype with anymore specificity than I’m pretty sure it’s genotype 1. They figure I’ll learn a little more when I see my doctor after the first month of treatment. I don’t tell them that I’m pretty sure the last time my doctor did bloodwork was almost a year ago.

I hang up the phone feeling a little concerned. AA has pithy sayings like “Let go and let God,”, which is intended to remind me that much of my life is outside of my control. My stepfather had the opposite outlook. His motto was “If you want something done right, do it yourself.” Sadly, the Old Man’s advice is better than AA’s in this situation. Letting go and letting God does not seem to be working here. I guess God is not involved in the US healthcare system.

Once again I call the doctor’s office, and once again I get a rather apathetic receptionist. It’s not really her fault, but she’s the one on the line, so she has to deal with my anger. I’ve done a lot of work on trying to control my temper, so I am very aware of how my anger builds. On the phone with the receptionist, I feel the annoyance swelling quickly into anger, and it’s interesting to observe it happening. I also do nothing to rein it in because I have learned, sadly, that the only way to provoke them into doing their jobs is through outrage. Politeness has netted me nothing.

“Can you hold for a minute?” she asks, and after 10 minutes on hold I’m pretty sure she’s abandoned me in the phone system. Suddenly there is another voice on the line – the doctor’s assistant, for whom I have left many messages. Finally we are talking.

My fears are confirmed: the only bloodwork they have is from last June. She tries to blame this on me. I shut that line down pretty firmly, and she doesn’t pursue it. I also learn that they hadn’t scheduled any bloodwork for my upcoming appointment, which sort of defeats the purpose. She says she’s going to send me authorization for bloodwork, and also for an ultrasound. We postpone my appointment until early May.

I’m not sure why I need an ultrasound. I’m not pregnant.

And that’s when I finally get the results of the fibroscan they gave me four months ago. I have cirrhosis of the liver.

A lot of my heroes have died of cirrhosis: Eric Satie, Chögyam Trungpa, John Cassavettes, Billie Holiday to name just a few… Still, I’d rather not join them, at least not any time soon.

Days Six and Seven

The side effects I’ve been told about are insomnia, muscle weakness, fatigue, nausea, headaches and diarrhea. I’ve been monitoring myself carefully. I wonder whether or not I am going to experience them psychosomatically.

My running feels a little off. It must be that muscle weakness, except that it’s felt off for more than a year and half, and I’ve only been taking Harvoni for seven days. Cross that off the list and nothing seems unusual. I’m in great shape for a 57 year old man who is slowly dying. We’re all slowly dying, after all, and lots of people much younger than me are dying much faster.

Next week I’ll run Cedro Peak 50K, just outside of Albuquerque, my first race of the year, and I am fully expecting it will be my worst 50K performance ever, but I’ve been expecting that for a while, long before this treatment started. The race is on my 58th birthday, and that more than anything could be accounting for this sudden slowdown. Getting old is a bitch, but at least I get to do it. It wasn’t really apparent or likely 25 years ago that I would make it even this far.