Monday, October 5, 2015

Cause for Alarm

     It wasn't hyperbole yesterday when I said that my husband had to undergo emergency surgery. By the time we conceded the fact that there was something seriously un-good going on in his eye, we were almost too late.

     I feel like there are times when people, sometimes even those within the Marfan community, forget that Marfan's is a connective tissue disorder - and that includes all of it! Every single piece of those fibers within my husband's body are flawed; his very foundation is cracked, hopelessly. The most dangerous condition to result from is an enlargement of the aorta, which can and often does lead to aortic dissection, though that, thankfully, is not something we have to worry about, since he had his aortic valve replaced with aftermarket parts over a decade ago. However, there are a plethora of other things that can go wrong, and the eyes, a delicate part of the body on the healthiest person, are especially susceptible in my husband's case.

     He hadn't done anything particularly strenuous even by his standards, when he started to notice that he was losing vision in one eye. It was the eye that had been operated on years ago, when the lens dislocated (another common Marfan symptom) and a new one was installed. He's had issues since, like that time when the incision opened up and he squished the eye juice out in his sleep, but nothing that hasn't eventually gone away. We're even used to him bleeding into his eyeball(s) on occasion when his INR is off and his blood's too thin; in fact, we've actually come to view that phenomenon as a handy little indicator of whether or not his warfarin is off.

     We let it go for a few days, hoping that it was simply blood in the eye like it's been so many times before. This time, though, his vision became less and less every day, until all that was left was a tiny fingernail-sliver of sight at the top of his eye. No bueno.

     He called his eye doctor, and when he told the front desk what was happening, an appointment was found for that same afternoon, probably because the medical professionals knew what we were trying to deny - the Marfan kid had a detached retina. It's always been a back-of-the-mind fear of his, at least since I've been around, and until now, we've been lucky in avoiding it. He knew what it would mean if the retina did detach - namely, surgery. And surgery for him is bad news any way you look at it.

     The problem with my husband and surgery is that he can't be put under general anesthesia without weeks of preparation. When you're on warfarin for a metal valve, it's different than being on warfarin to control blood clots. Generally speaking, people who take it to control clotting are on a lower dose than he is, and they keep their blood thicker (literally) than he has to. Why? The human body is a clever, clever devil sometimes, and in his case, it knows that that titanium valve is not supposed to be there. In an effort to defend itself from the supposed foreign invader, his blood will clot up around the valve and try to force it from the body. Obviously, that's not possible, so what happens instead is that the clot that forms then breaks up into tiny little pieces, which can lead to a life-threatening stroke. Neat. (That was sarcasm, if you couldn't tell. It's already happened once and it sucked. Hard.)

     There's a way around it, which I'm not going to bore you with right now, but it takes a couple of weeks to accomplish, and that was time we didn't have. So just like last time something went wrong with his eyes, the doctor, once he determined that he was indeed dealing with a detached retina, told my husband that he would have to have surgery, like, yesterday if there was any chance of saving his sight, and he was just going to have to hold as still as possible while they deflated his eye, cut into it, and sewed that pesky little retina back on.

     I know more than my fair share of people who have issues touching their eye to put a contact in, so can you imagine what it's like to be AWAKE when the surgeon is cutting your eyeball open? It has to be like you're trapped in a horrifying Devil's Rejects/Clockwork Orange mashup. I mean, I've had eye surgery myself, and not the laser kind, but I was fully asleep while the good doctor did what he had to do. I don't know, nor do I care, how he accomplished the task he set out to do, and I'm okay with that. My husband, though. He experienced everything in glaring detail.

     I went into it suspecting it was going to take the full 2 hours the doctor advised it might, because a 42-year-old Marfan patient is so far from a good surgery candidate it's not even funny. Needless to say, I was not one bit surprised when the receptionist at the front desk of the surgery center turned off the lights and went home for the day, while I was still in the waiting room, watching the double doors that led to the recovery bays.

     Eventually, his surgeon came out to get me and let me know that it had gone well, and though we wouldn't know for sure for weeks, possibly months, whether or not his vision was completely intact, he was hopeful. I went back to see him, to gather up all the things that come with a day of surgical adventures, not the least of which was my husband's new face-doughnut. What's that, you ask? It's like a butt doughnut, the one you get if you break your tailbone, but for your face. Why, you ask? Allow me to elaborate.

     The fix for a detached retina is not quite as simple as sewing it back in place, as it turns out. First, the eyeball is drained of some of its juice, in order to allow the surgeon to go in and reattach the retina. Once it's secured, they then add a gas bubble to take the place of the juice and help keep the retina in place while the stitches heal. For the first 72 hours or so? You have to keep your head in a certain position, mostly face-down, so the gas bubble stays in a certain position, so that everything has a chance to heal properly and this whole thing wasn't just an exercise in futility. So yeah. Face-doughnut.

     The worst part of it, though? The fact that I had to leave him five days later.

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