Monday, May 28, 2012


     Last week, I had to call 911 for the first time in all my many Marfan-related adventures with my husband. He called me at work, said he couldn't really control the left side of his body and would I take him to the emergency room when I got home? He was kind of slurry with his speech and even though I knew immediately what that meant, I didn't get scared and I actually didn't call for help right away. In fact, he called or texted me three more times between the initial phone call and when I decided to call an ambulance. What does that mean, that neither of us called for the medical professionals and instead debated back and forth over whether we should go to the ER or to the urgent care? It means a lot of things, I'm sure, and that's something I plan to dive into in the next couple of posts. But first, let's set the scene, shall we?

     I was working until 5:30 last Tuesday and my husband was at home, him being currently unemployed and all. He'd recently started taking his daily dose of blood thinners again, after having received the steroid injection in his spine the preceding Friday. There had been no complications up until then and even though he'd been without his warfarin for a week, my husband said he was feeling fine. My phone rang at about 4:30, an hour or so before I was to go home, and that's when he told me that he'd been sitting at the computer when all of a sudden he couldn't control the left side of his body. When he realized what was happening, he tried to make his way upstairs to the couch to lie down, but it took forever and day because half his body wouldn't cooperate.

     Now, his pain-management doctor had warned my husband before he ever went off the blood thinners that doing so could potentially lead to clotting and a subsequent stroke. It was a calculated risk, one that seemed both necessary and unlikely to cause bad things to happen. Yeah, about that. Apparently, my husband's blood thickened up like whoah and a tiny clot made its way to his brain, momentarily pausing the blood flow and causing a tiny stroke. We wouldn't learn all this until a couple of hours later, however, when the little Irish doctor in the trauma section of the ER filled us in.

     I'm a smart girl and I've have several relatives suffer strokes, so I knew what the symptoms were. When my husband called me and told me what was going on, it wasn't difficult to put two and two together and come up with the likely answer. I still wasn't freaked, though, because he was talking to me and texted me over the next hour that he was starting to regain control of his limbs. This was encouraging and I figured I would just run him by the ER when I got off work and he could chill on the couch until then. This plan was initially my husband's suggestion, by the way, not mine.

     Once 5:30 rolled around, I gathered my things and decided to make a call to my mother on the way home. Never mind the fact that I'm twenty-seven years old and married - my first instinct is still to call my mother when something weird happens. I did so as I was walking to my car and asked her to tell me what the symptoms of a stroke were. Of course she rattled off everything that my husband had just described to me, because why the hell wouldn't we be dealing with a neurological event? She, of course, wanted to know what was going on, because that's not really the kind of question you just call somebody out of the blue and ask. I told her that her son-in-law had, in all likelihood, just suffered a stroke and I was on my way home to pick him up and take him to the emergency room. That bit of news did not sit well with her.

     I had just hung up with her and called my husband to say I was on the way, put your shoes on when my call-waiting went off. Unsurprisingly, it was my mother, who had taken all of thirty seconds to decide that I needed to call 911 NOW. I was on the highway, sitting in traffic at this point, so after a couple of, "Really? You think?" and " YES! Call for a goddamn ambulance NOW!" back-and-forths, I told her I would and called my husband back to inform him that he would shortly be hearing sirens and that they were coming for him. He immediately tried to talk me out of it, finally resorting to, "Please?" in his saddest voice. I had no choice but to pull out my Put-Yourself-In-My-Shoes card, which effectively won the argument.

     I called 911 while stuck in traffic and when the operator answered, I asked them to please send help to my house, as my husband was alone and I believed he'd just suffered a stroke. The dispatcher was very nice and reassured me several times that help was on the way. Even then, making that call and saying out loud what had happened, I was completely calm. I didn't speed to get home, I didn't bob and weave through traffic to try and get to my exit faster; I just got off the highway when it was time and continued on my merry way. In retrospect, it was kind of the weirdest damn thing, but that's an entry for another day.

     My husband and I live half a block from the police station and fire house, so I knew full well that the emergency personnel would beat me to there. Sure enough, when I turned onto our street, I saw a cop car blocking my driveway, a firetruck with the lights flashing and an ambulance with the lights on and the back doors standing open. I parked the car on the street and hopped out to find my husband strapped to a stretcher in the middle of our front yard, an EMT asking him to count backwards from one hundred. I asked the nearest one who didn't appear to be occupied if they were taking him to the hospital and if so, which one. I was told that yes, my husband absolutely had to go to the hospital and he'd go to Barnes, which has a level 1 trauma unit.

     I guess they were satisfied that he was okay to move, because the EMTs started loading my husband into the back of the ambulance for the short trip to the hospital. I was asked if I wanted to ride with him, but I declined and told them I would follow them in my car instead. After all, how the hell else was I going to get home after all was said and done? As they shut the doors on the ambulance, I turned and thanked the officer standing behind me. Then I grabbed the mail, went into the house and fed the cats, even though their bowls weren't empty, because I knew it was going to be a long damn night in the hospital. Unfortunately, my suspicions were confirmed a short time later, once I got to the emergency room.

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.