"Evil turns to statues - and masses form a line
But I know which way Id run to if the choice was mine
The past is knowledge - the present our mistake
And the future we always leave too late
I wish wed come to our senses and see there is no truth
In those who promote the confusion for this ever changing mood"
For those too young to have been around when that song was popular, or somebody that was around but wasn't into early 80's BritPop, that is from "My Ever Changing Moods" by The Style Council, a band that I really liked back then. It was fronted by Paul Weller, one of the best (in my opinion) musicians and lyricists of the last 30 or so years. Those lyrics pretty much sum up a lot of where my head is at right now. I'm suffering the 21st century affliction of too much information. It's not coming from the internet, television, other media or the distractions resultant of the way we're collectively living our lives in the 21st century. This time it's personal. This time it's coming out of my own little old head, chemically enhanced, or as one might alternately see it, pharmaceutically polluted at worst, overstimualted at best.
One can perform all the due diligence possible to prepare for a long, protracted and uncomfortable medical therapy. I'm not the first one, nor am I necessarily the most fragile one, nor am I necessarily even the "normal" patient, take your choice. I didn't spend hours and hours pouring over medical abstracts. I am (was) a health care professional. Let's say was, since this year I switched my nursing license to inactive. I'm mean seriously, what are the chances I'm ever going to hit the workforce again? Bing! That's right Bob, the answer is "not until hell freezes over!" Knowing what I know from my professional education, my understanding of pharmacology, my prior understanding of both HIV and the Hepatitis C viruses (though not when served as a mixed drink), and my additional research on Interferon (I had a general knowledge. Back in the very early 90's, when I was still working at UCSF, I remember having patients in our ICU that were on Interferon trials for some cancers. At least I'm pretty sure about that. We were definitely doing trials with Interleukin-2, and hopefully I'm not confusing my recombinant DNA-derived drugs. Whatever.
I remember it being nasty, and folks ending up in the ICU for a variety of complications, the most common one was thrombolytic thrombocytopenic purpura, also known as TTP, a very serious clotting disorder that at that time had a pretty high mortality rate, so that is a big deal. It's still a bad disease, though I'm certain that they have drastically reduced the mortality statistics.
Then, and this was easy. It's kind of like asking any random person if they personally know somebody who is gay, personally being described as "having had one's acquaintance face to face". Nearly everybody can think of one, and if they can't, if you ask them a week or 2 later, they will be reminded of somebody they knew with Hep C. I personally know somewhere in the range of 20 people that have it, and of that number, more than 80% have tried the Pegasys protocol, which is the current standard of care for somebody with active Hep C. I am on the Pegasys protocol, which is comprised of 48 weeks of therapy: Pegylated Interferon-a (weekly injection, self-administered) and Ribavirin, an oral antiretroviral drug, in pill form taken twice a day. I have a couple of interesting sidebars here (well I think they are interesting) for those with not a lot of medical education:
1) Hepatitis C is in the class of viruses know as retroviruses, called thus becuase of the way that they replicate. HIV is another retrovirus. Unlike other viruses retroviruses carry only the RNA of their protein. Without getting too heady here, if you take the DNA molecule, which is a double helix, you split the twon chains in half and you end up with a single strand of RNA. Since DNA is the protein molecule which transmits all the genetic information for a said cell, what a retrovirus does is deek out a host cell by finding the receptors on the cell surface which basically are the "key" to letting the viral RNA in the house. One in, this viral RNA sets up a reaction using an enzyme called reverse transcriptase to change the host cell DNA into a little virus factory that pumps out thousands upon thousands of copies of the virus. Eventually the host cell gets used up by this process and end up like a too full water balloon of viral copies. The cell wall breaks those thousands of viruses go out hunting for new host cells, and the dead cell is gone before it is allowed to do the function God made it to do, reproduce itself into, lets say, a white blood cell. It's kind of like taking home a date from the bar that if you were sober you know you wouldn't do but well, you're drunk and horny. The next morning, your present from the night before is that it feels like you are pissing sulfuric acid the next morning.
So what is Ribavirin, currently the only antiviral for Hep C? Well, it's a neucloside analog, and it blocks the production of the reverse transcriptase, thus preventing virus replication. In theory, that is. If you remember the old days of HIV, the first drug on the market, AZT, is a neucleoside analog. It was certainy better than nothing at the time, but after a period of time, HIV finds a way to work around it and its effectiveness over time diminishes. Which is why us HIV'ers that are on drug therapy are on a "cocktail", or combination of drugs, which instead of just blocking the reverse transcriptase, they block a number of necessary steps to viruses making babies, and you can then stop disease progression.
The problem here is that Hep C therapy is still in the pharmaceutical dark ages. We only have a neucleoside analog (Ribavirin) and a drug that is found in our immune system naturally (Interferon) and this is a "signaling" protein mounted as one of the first defenses to viral infection. The problem is that interferons are non-specific to the cells they are targeting to kill, and so when you use this as a drug therapy, it is basically like going squirrel hunting with an AK-47. You might kill the squirrel, but there will be (a lot of) collateral damage. This is why the compendium of potential adverse reactions that you are warned about when starting the drug is the most voluminous warning that I've ever seen, warning you of the possiblity of anything from a dry mouth to suicidal or homocidal behavior. Lovely.
2) You might remember awhile ago (unless I already put you in a coma with the previous explanations) that I said that I am taking Pegylated Interferon-a. The a is for alpha; there is more than one sub-type, or genome, if you are a geek like me. All that pegylated means is that the Interferon is suspended (mixed) with a lovely little industrial solvent (in the diol alchol family) called Proylene Glycol. It is used to make everything from antifreeze to deodorant sticks to food color to hydraulic fluid. Oh, and it's used in the pharmaceutical industry as well, often as a solvent when making an oil-soluble drug into a water-soluble form so that it can be given intraveneously. The way it works when it is put into Interferon is to (by some chemical reaction that I still don't understand that well) slow down the release of the drug so that it has a longer period of therapeutic drug levels, which is, by luck, from 2-3 days to 7-10 days. That's why I only have to take it weekly. So to put it a little more simply, it's like I'm treating a bum knee by amputating it slowly with a rusty steak knife.
I have gone onto such a wild tangent that I'm not quite sure where I was headed in the first place. Somehow this was supposed to all be connected. Oh yeah, Pegasys sucks. But for now, it's the only game in town. There isn't an antiviral cocktail for Hep C yet, so with only a single-antiviral drug, the option is to go at it with a scorched earth mentality. There are some new drugs down the pipeline, one is a protease inhibitor (this disrupts a different stage of the viral replication cycle, but I'll spare you the details this time. If I've still got you, then honestly, haven't you suffered enough?
The long and the short of it is: Pegasys is the standard of care. It's not got success rates that would inspire a lot of optimism. If Hep C is diagnosed in its acute stage (defined as the first six months post-infection) the cure rate is about 60-70% for the sub-class of the virus that I have 1a, which is, of course the one with the poorest response to Pegasys. If someone is in the chronic stage (more than 6-ish months, the cure rate drops by about 50%. We're unfortunately unsure as to whether I'm an acute or a chronic case. The last negative Hep C test I had was in August of 2007, so I could be lucky or unlucky.
They don't treat everybody with Chronic Hep C with Pegasys at the moment. If somebody is otherwise healthy, then they will often sit on it, since once the virus hibernates for its 20-30 year winter, the typically otherwise healthy patient will be asymptomatic for that same period of time. The problem for us co-infecteds (Hep C/HIV) is that Hep C doesn't tend to follow the rules. Typically with sub-type 1a, one can divide the remission period by half.
The other ugliness with co-infection is that the risk for a certain very nasty form of liver cancer, called hepatocellular carcinoma(HCC) is about double the incidence that is seen in the Hep C only infected population. I had a good friend named David, a nurse that I worked with for many years. We went on disability within a year of each other. Unfortunately, David had Hepatitis C, which he got from a needle stick at work years before, and within 9 months after being diagnosed with chronic active Hep C, they found a mass on his liver. Within a year and a half this beautiful, tall, handsome, slender and dapper gentleman (he kind of reminded me of a cross between Nick Charles and John Waters) went from looking vital and relatively healthy for a guy that was pretty debilitated by HIV but puttering along at a level that still allowed him a quality of life (once he was able to stop working) to a walking skeleton the last time I saw him. I barely recognized him when he walked into the doctor's office. We hadn't seen each other in about a year, for various reasons, but coincidentally we had the same doctor. Had I not heard him talk (and David's voice was so characteristic, at least to me) I would not have recognized him. That last time I saw David haunted me from then on. David died within weeks of the last time I saw him. He didn't die of complications of HIV, or direct liver damage from Hep C. He died of HCC. I never expected to lose my friend to cancer, and to watch him wither away so precipitously. There are three cancers I hope to never have to face, since they decimate the body quickly and have very low cure rates relative to most other cancers. Those are pancreatic cancer, melanoma diagnosed at stage 3 or 4, and any of the liver cancers.
The other option for non-coninfected patients is to wait until the damage to the liver is at a critical stage, and then the treatment is a liver transplant. I'm almost glad that isn't an option for me. When I worked at UCSF in the ICU back in 1989, I took care of the first liver transplant patient treated there, and after that, many more post-operative transplant patients. As if it weren't awful enough just to go through that surgery (and it is a long, complicated, bloody and nasty surgery), the rest of your life you're on drugs to keep your body's immune system from rejecting the donor organ. Again, this is another case of shooting ducks in a barrel with an Uzi. You aren't just (hopefully) stopping the rejection, you're messing up your immune system and a lot of other organs and systems along the way. I've watched that. It's not pretty, and I wouldn't want to have to make the decision whether or not to go down that road.
So back to where I started: I think I know too much here. Not only have I done my straight-on research, I've also done my experiential research. I've talked to at least 20 different people about their experience with Pegasys. I may have said this in a previous post, so sorry if I'm repeating myself, but I have yet to find anyone that sailed through without a problem. The one problem that I've heard from every last one of these people: depression. Unfortunately this is not your "typical" depression. It is insidious, it seemingly creeps in from nowhere, like the uninvited (and unwanted) party guest. It tends not to come on slowly, but most people have told me that one day everything was fine and the next day their world was collapsing. Imagine how living with that information can be. I am second-guessing myself constatantly. I wonder if a little melancholy is going to erupt into a full-blown plunge down the rabbit hole.
These last couple of weeks I've been really weepy. It's weird, because in general, I'm stoic, quiet and I don't wear my heart on my sleeve. I've never been a big crier, so when I cry my friends know that something is up. The weird thing is, this time I'm getting weepy not because I'm sad, but it's a more schmaltzy kind of melancholy: crying at silly movies, stirring and inspirational stories I read. For that matter, I've caught myself crying at commercials. The weird thing is: I don't feel, depressed, hopeless or inconsolable. It actually feels good, really cathartic. Now normally, pre-Hep, if this had happened I wouldn't have put much thought into it. I would probably say it was hormonal, on my male period. But now, I second-guess everything. My moods, my desires, my energy level, or really for the most part, my lack thereof, my physical symptoms are all getting second-guessed. Is this normal? Is this live or is this Memorex?
I'm getting tired of walking the minefield of disease and treatment. I'll keep doing it as long as the benefits outweigh the risks and/or the pain. But this is definitely not normal for me. I don't really know what is normal for me anymore. My ability to discern the differences between normal/typical and new/atypical is way out of whack. It goes without saying that this is an interesting time in my life. That doesn't mean that I really wanted to learn anything this way. That is rhetorical though. This is where I am, and this is what is happening, and these are the tools that I have to deal with it. The answer to the question "but is it enough?" seems out of reach at the moment. For that matter, maybe it's not the time to be asking that.
It's midnight, once again I've written myself into exhaustion and brain freeze. This is going live virtually unedited. It will likely read at least a little bit differently tomorrow when a less addled brain goes through and fixes the mistakes. But if you're lucky enough to get the unedited read, you might get something that is gone tomorrow. Hopefully it will make sense, or at least sound logical.
Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.
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