Tuesday, May 15, 2012

Needle and the Damage Done

     I know I've mentioned before how I do that thing where I check the stats on this blog to see what terms people plug into whatever search engine they're using to wind up here. The vast majority of the time, the terms are totally benign, things that most people would type in if they were trying to land on this blog without knowing its name. Once in awhile, someone will type something in that just breaks my heart and then I have to write about it to get the sad pictures out of my head. Today, though, was the first time I just stopped and cocked my head stupidly to the side while looking at the computer screen, like one of those pug memes that people love to make the subject of chain emails. Someone somewhere actually used the term "Marfan vampire" and ended up here, in my tiny corner of the internet. I haven't the first clue what a Marfan vampire is or why someone would put those two seemingly unrelated terms together, but the fact that they did provides me with a lovely segue into what I really needed to talk about and I'm not one to waste an opportunity.

     Today is the third day of a (hopefully) five day stretch during which my husband, the kid with the titanium heart valve, is deliberately not taking his wafarin. For those of you not in the medical field or in love with a less-than-healthy specimen, warfarin is the generic for Coumadin, a blood thinner that people who've undergone the heart surgery my husband has have to be on for the rest of their lives. It keep his blood thinner (duh, right?) than a normal person's not because the metal valve can't pump blood of a normal thickness, but because the valve is an unnatural object and his body damn well knows it. The body's natural reaction is to then clot up around it, which is completely harmless...until one of those clots breaks off and lodges itself in his brain or his lung or his heart. Should that happen, my husband will most likely be either A) dead, or B) left in a godawful vegetative state. Neither of those options are acceptable, so it's daily meds for the win.

     Right, so I've now established why it's so damned important that my husband take his warfarin every morning to keep his prothrombin time in the proper range, yes? (Don't even ask me to muddle through an explanation of what PT is. That's why I linked to the wiki page.) Why, then, would a supposedly sane individual voluntarily refrain from taking his daily dosage when he knows what could potentially happen? Because we're basically out of options as far as pain management for his spinal issues go, that's why. I know, what the hell does one have to do with the other and why am I phrasing so many things as questions instead of just getting to the damned point?

      Like I've said, there are two kinds of back pain my husband puts up with as a result of his Marfan's Syndrome - spinal and muscular. The muscle pain is a little easier to withstand, as he explains it, because heat and Flexoril usually have at least some effect. It's not a whole hell of a lot, but he can typically keep the edge dull enough to be able to ride it out until the cramp decides to let go of his muscles. The spinal issues, however, are a little different because they're becoming more and more frequent and can only be treated with the heavy shit that's administered via IV in the emergency room. We're talking bone-on-bone with nerves smashed in between while the vertebrae grind against each other with every move he makes pain. "Unpleasant" doesn't even begin to cover it.

     When I first found about my then-friend's condition, back when we were just two weird kids who befriended one another, my mind immediately went to steroid injections, as I knew my father had been treated in such a manner for a herniated disc in his back with a considerable amount of success. While a herniated disc is no dural ectasia, some of the symptoms are similar and the cause of the pain in both cases is not too terribly different. The problem with my grand plan was that I didn't know you can't inject a warfarin-user's spinal sacs with steroids because you can't risk blood seeping into the spinal fluid when the needle pierces the wall of the sac. If the blood does leak into the hole made by the needle, it'll form a barrier between the steroid and the damaged part of the spine, thus making the whole thing an exercise in futility.

     My husband's under the care of a new pain-management doctor, however, for the first time in a number of years. One of the first tests ordered by the new doctor was a bone scan, which means my husband was radioactive for a short period of time once they shot him up with a tracer. The tracer is a radioactive substance that works its way through the body and eventually settles into areas of more rapid bone growth, which generally indicates a problem. When the results of said scan came back a week later, there was, shockingly enough, a big problem.

     The laundry list of badness included overall disc degeneration, osteoarthritis and, most troublesome for the time being, serious deterioration between his L-5 and S-1. It's this that we're trying to address right now with the injections and the worrisome vacation from blood thinners. Apparently, the L-5, S-1 nonsense is both partially caused by my husband's Marfan's Syndrome and making the other symptoms of his disorder as they relate to his back worse than they might otherwise be. How is that even fair?!?! The office staff at the various doctor's offices and hospital testing centers likely think I'm insane because at this point, I just laugh or make some morbid, badly-received joke when they deliver the latest round of ugly news. That's fine; my husband and I have developed our own language when it comes to his health issues and it's generally not smiled-upon by those outside our similarly-twisted circle.

     So now, like so many times before, like so many times to come, we wait. We're waiting until his blood gets to the proper level of thickness and then he'll be injected with steroids and immediately fed a blood thinner, in the hopes that we'll hit that magic window where everything happens just as it's supposed to. The steroids have to make it through the hole without the blood blocking their path and the blood has to thin back out before it can wreak holy hell within my husband. And the whole plan has to, you know, fucking work, because there's no guarantee that it will. If it doesn't, we might get to move on to burning the ends of his nerves, so that should be a good time.

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