Episode 77: Clarity After Hep C Cure

Harvoni kicked Hepatitis C's ass. By the time of mid-treatment, a month and a half after starting Harvoni, there was no sign of HCV in my blood. My post-treatment lab tests gave the same result. My gastroenterologist says he has been amazed at how well his patients have done under this treatment. It's kind of a miracle.

That being said, I keep expecting to see a lawyer's spokesperson on late-night TV asking whether I took this drug and then listing all the "adverse events" (nice euphemism there) that crop up long after the treatment ends. THAT being said, I'm hopeful those effects don't show up for 20 or 30 years, just as HCV hides in one's system that long, seemingly without symptoms.

Of course, I'm an optimist, and I'm hoping taking Harvoni was safe and my cure will be permanent without such "adverse events" appearing some day.

So . . . how has being cured of Hepatitis C changed my day-to-day health?

The most phenomenal result of treatment thus far is how clear the world became once that nasty little virus had been vanquished. I can remember driving on the interstate and looking at the beautiful Appalachian mountains that drew me here and the sky behind them and thinking, "Wow. Everything is crystal clear," almost as if the world had been washed and buffed and polished and was shining again.

"My" mountains and the interstate--though not on
the clearest of days, unlike the clarity inside my
brain, now cured of Hepatitis C!
Photo by my pal Lisa Sheirer

Brain fog is a common symptom experienced by those living with Hep C. (Here's more on the symptom from HepatitisC.net--https://hepatitisc.net/living/hepatitis-c-symptoms-brain-fog/.)

After some thirty years with HCV, the virus had so clouded my brain, both in my visual perception--I was truly in a fog--and in my thinking that I sometimes thought I might have early-onset Alzheimer's. I now know that wasn't and isn't the case. Not only is my visual perception clear again but I am mentally clear as well (with the occasional senior moment nearly everyone my age--58-- experiences).

And I must say that this new clarity is a pretty awesome thing.

I have no doubt that all patients who have been cured of Hep C and its accompanying brain fog experience the same joy when clear sight and thought are restored. I know, as a person whose mental life has always been rich--if muddled and confused for the past few years--this change has given me new hope for my future. Both my livelihood and leisure time involve mental processes such as reading, writing, researching, and daydreaming (or, rather, thinking up new ideas for work projects and for writing stories and essays). The cure has returned to me a long-lost ability to focus that is so important to what I do and how I "see" myself.

I do still have foggy days, but they are few and far between--and that improvement alone is invaluable to me.

As Gary Zukov says, "The characteristics of an authentically empowered personality are humbleness, clarity, forgiveness, and love." It's difficult to have the other three--or much else--when you don't have clarity. Throughout those years when my cognition was hazy and cost me two jobs I loved, I felt neither authentic nor empowered. I felt as if I were a shell of my former self. I'm beginning to feel whole again. Authentic. Empowered. And, damn, that's nice.

I'm trying to keep my posts shorter, so I'll continue this report next time. In the meantime, here's to seeing and thinking clearly!

Episode 75: Update on Harvoni Treatment for Hep C

Well, sports fans, it's now been a month and a half since I started Harvoni to treat the Hepatitis C I contracted during a blood transfusion in the 1980s.

So far, side effects have been few, though I did have one mortifying experience with uncontrolled diarrhea in a public place. Nothing is worse than walking through a fast food restaurant trying to get to the bathroom before a major "accident" and not making it in time. But that wasn't the first time that has happened. My theory is the medicine kicked my liver issues into high gear while the virus tried to fight off its attacker, and that was the lovely result.

The diarrhea has calmed down a lot since those first couple of weeks on the stuff, I'm happy to say. I hope that's the LAST time I ever have to deal with that problem in public!

Now I have a new issue--my fingernails have turned brittle and have begun cracking and splitting. Ouch! My fingertips hurt as I type. I'm keeping them cut short, but they still split painfully. Ugh. I also worry that my hair, already thin, is getting thinner. But I suppose far worse things could be going on, and I'll be happy if this virus is killed off.

I've been reading forums online, which is a dangerous thing to do. I learned that long ago when contemplating going on Effexor for my anxiety. If I'd believed everything I read, I never would have gone on a drug that transformed my life from one of debilitating anxiety to relative self-confidence and a clearer perspective. I'm not saying it's a perfect drug, but I'm grateful for it.
And the same will probably be true for Harvoni.

The scariest thing so far about the forums is that a lot of people claim to have side effects long after stopping the drug. Now, supposedly, the Harvoni is out of the system two days after finishing it. So it seems weird that folks would be having side effects when it's no longer in the system. But we do hear about long-term effects of radiation and other treatments that happen long after the treatments have stopped. We see the ads from lawyers about such effects. I really hope nothing like that will pop up for former Harvoni users. I hope I didn't just trade one death sentence for another. On the other hand, we all live under a death sentence. It was worth the risk. I think.

I'll check in again if I notice anything else as I go through treatment. I'm halfway through and keeping my (painful) fingers crossed that I'll be one of the 95-percent-plus patients who are cured of this nasty virus.

Episode 72: Upon Beginning Hepatitis C Treatment, the Bizarre New Experience of Hope

"Hope is the thing with feathers."

Yes, I know this quotation is practically a cliche now, but as someone who is about to finish her PhD in English somewhere around the ripe old age of sixty, I could not forego the opportunity to quote a little Emily Dickinson who, if I were concentrating in American Literature, would be my gal. As it is, I'm in British Lit, and I still haven't figured out who to choose for my focus--I have at least five favorites.

As usual, focus eludes me.

So, let me NOW get to the topic of the day: Tomorrow I start an eight-week course of treatment for Hepatitis C, Genotype 1a, on Harvoni. Perhaps, just perhaps, when I finish I will be blessed with the talent of focus, which has never been one of my greatest attributes, but which has now pretty much completely flown the coop of my brain.

"What?' you ask. "Didn't you, Mary Dell, just air an episode bewailing your inability to afford treatment?"

Yes, in fact, I did, and that is what I believed. However, the stars aligned, and tomorrow I will receive, at no cost to me, my first shipment of a month's supply of Harvoni. I received a grant for the copay of nearly $4,000 of the $50,000-ish cost of the treatment, and before anyone yells that it is the people who aren't working who don't have to pay, which isn't right, the fact is that I have worked my whole life and only stopped when I got too sick to do so full-time.

Before you judge, walk a mile in my shoes. If you can manage to walk a mile; I'm not sure I can anymore. Once I tried to walk from my honey's house to mine, a distance of 1 1/2 miles, and I couldn't even get halfway. A woman pulled over to me, where I sat with my head in my arms on the side of the road, and offered me a ride. I don't know what would've happened if she hadn't.

Besides, maybe I'll be cured, and maybe that cure will have a significant effect on my degenerative brain disease, my sleep disorders, and my worst foe, a weakness and lack of energy that has nearly destroyed my quality of life. And if I'm cured and can do it again, I would love to go back to work and bring in some cash.

This being on disability is no joy, let me tell you. I pull in a fraction of what I made as a college professor for some years and as a grantwriter at a non-profit organization for nearly a decade. My darling cottage is not so darling anymore because it's in desperate need of maintenance, but I can't afford that.

Winter is Coming fills me with dread, because keeping my little poorly insulated 1940s house warm during bitterly cold mountain winters will suck even more out of my budget when I already live on the edge of being turned out of my home. I have no luxuries, although my son and I do go out to restaurants now and then. Hey, I was spoiled by my father, who took the family out to eat every Sunday night. My grocery bill these days is small because, with my conditions, I have little to no appetite, so I see any occasional night out as an opportunity to get some nutrition in me.

I do love to cook, but now we're back to the original problem: my fundamental lack of energy, my general exhaustion.

I do so hope that my energy problems will be cured along with the Hep C! I'll try to regularly check in to let you know how the treatment is going.

Hope about my future is fluttering inside me for the first time in a very long time. It feels weird; I've forgotten, honestly, with this bubbly sensation felt like. It's very much like a thing with feathers beating against my rib cage--a bluebird, perhaps, flitting through the trees as a new dawn breaks.
________________

N.B. For a wonderful photo of a bluebird in flight, see a blog by Bud Titlow in the Tallahassee Democrat serendipitously titled "Eastern Bluebird--Is Happiness on the Way?"

Episode 69: Can't Afford Life-Changing Hepatitis C Treatment

Every day on TV, ads for Hepatitis C treatments promise me a new life.

I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.

Luck of the draw, I guess.

I need to get this publication!
https://www.opensocietyfoundations.org/publications/hepatitis-c-treatment-price-profits-and-barriers-access

Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.

Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.

I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.

Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:

• Insurance companies will not approve treatment unless I have evidence of liver disease. My liver has held up pretty well through all of this, though I'm going for a biopsy in the morning. It has been something like 10 years since my last biopsy.
• Treatment for Genotype 1a costs $45,000.
• If I am liable for 20 percent, that means I'll owe close to $10,000.
• I am on Disability and have a three-hour-a-week part-time job, so my income is just barely over the poverty line--but is OVER, so I am not eligible for any state or federal assistance with the cost of drugs that are making some CEOs out there very, very, very rich.

Let me be straight: I don't begrudge the poor people their subsidies. I am damned close to poor, and it is damned hard. I know what it's like to be comfortable; I grew up in a middle-class home; my father was an electronic engineer and my mother a homemaker. I know the difference. 

Blaming the poor and begrudging them the help they get from the rest of us just distracts us from the main problem: the fact that the wealthy do not pay their fair share of taxes (thanks to Reaganomics) and the other fact that far more of our tax money goes to the war machine and sketchy crony contracts than to help the poor, old, and sick among us.

Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.

So here's my dilemma now. 

I really do want to have this disease treated. I really do want to feel better. I would love to be able to go back to work full-time and make some decent money so I could fix up my rapidly crumbling home and pay off my current bills and be able to enjoy my last days without constant financial worry on my mind. 

But $10,000?  How the hell am I going to do that? I don't even have good credit, thanks to my then-employer's terminating me when I became too sick to teach full-time anymore. I had to declare bankruptcy and am slowly working my way back to half-decent credit--but who the heck is going to give me a loan?

This is why universal health care needs so badly to be instituted in this country. There is no reason for drugs to cost that much when pharmaceutical CEOs are bringing home gazillions of dollars every year in salaries and bonuses. There is no reason for insurance companies to limit their coverage when insurance CEOs are bringing home gazillions of dollars every year in salaries and bonuses. 

We are a stupid people, we Americans, to let this go on. We keep electing puppets into Congress who don't have our interests at heart--not the tiniest bit. And we are paying for our stupidity with our very lives. When are we going to wake up? I did my part--I voted for Bernie. I just hope he is the beginning of a wave of awareness in this nation. We the People need to take back health care from the vampires sucking our blood--even mine, chock full as it is of a deadly virus.