Thursday, February 23, 2017

The Line Begins to Blur

     You'd think that by now, my husband and I would have a firm grasp on how to handle health issues as they come, as well as his Marfan's in general. You'd be wrong.

     We're currently facing down another unexpected surgery, because he was getting ready for bed last Thursday and discovered an umbilical hernia, like it had every right to be there. Keep in mind, neither of us is a medical professional; I'm a paralegal in a personal injury law firm, and he works in IT for an accounting firm. So really, neither of us was qualified to make that diagnosis, especially at 10:30 on a Thursday night, but I feel like we've got a enough of an idea between the two of us that we know when something's seriously wrong, as it so clearly was. And what did we do? We went to sleep and figured we'd deal with it in the morning.

    I know some might think this wasn't the best idea, considering that a hernia can be a major problem on an otherwise healthy person. While some people can and have lived with hernias for years, others have found themselves in the emergency room because it turns into a strangulated hernia, which is bad news all day. A hernia is particularly problematic for my husband, because it's easy for it to keep growing in size, and fast. Should we have gone to the ER as soon as we suspected? Maybe, or maybe we did the right thing by waiting and calling his doctor in the morning. I never know, is the problem.

    I think the biggest problem that I have yet to figure out a solution to how to assign the correct level of urgency to the various emergencies and semi-emergencies that populate our life together. When you live a life that includes as much medical care as his/our does, you learn pretty damn quickly that not everything can be an emergency room visit, for practical reasons.

     If you've never spent a significant amount of time in an ER, I'll tell you right now it's not somewhere you really want to become intimately acquainted with. We always go to one in particular, because they know what Marfan syndrome is, and as soon as they pull my husband's chart, they know who to consult for whatever it is we're in there for, because his specialists are at this hospital. Trust me when I say that an ER that knows what they're looking at with him could be a matter of life and death - Jonathan Larson, the playwright who penned Rent, died days after he first went to the ER with symptoms of an aortic dissection. The doctors diagnosed it as stress, or the flu, when in reality, it was most likely undiagnosed Marfan syndrome. And now you know my worst nightmare, and why we always go to the hospital that knows him; it's like Cheers, but for not dying.

     Anyway, while it doesn't normally take a long time to get back to the exam room to be seen, because as soon as my husband mentions his medical history, the nurses do NOT fuck around in getting him treated as fast as possible. Then, once he's back there, it's always at least one round, if not more, of diagnostic imaging, because no one wants to be the doctor that missed an aortic aneurysm, even if that's not what we're there for. Gotta check, every time, just to be sure.

     It takes a long time for all this to happen, and we're never home before 3 or 4 in the morning, at which point, we both usually have to call in to work, because neither of us is a functioning human being at that point. Plus, even though he has health insurance, it's still a $100 co-pay every time, so that's a consideration, too.

     All of that actually takes about 7.6 seconds to process in our heads when making the decision whether it's a real emergency or not, if you can believe that. It just something that you get used to, kind of, and that's what happened when we talked about what to do with the newest problem. I guess we did okay by waiting until the next morning to call his doctor, though I got the impression than she was less than pleased. Apparently, she didn't even have to fully examine my husband before deciding, "Oh, yeah, that's definitely a hernia, and we've definitely got to fix that. You're getting scheduled for surgery."

     Surgery is one of my least favorite things when it comes to my husband, because it's so goddamn complicated, even for something that should be simple, like a hernia repair. Remember, though, he's on a pretty high dose of coumadin because he's got a titanium heart valve, and you can't operate on someone who's on coumadin. No, see, what they have to do, is put him on a fast-acting injectable blood thinner called Lovenox. Pulling him off one medicine and getting him regulated on the other is always a pain in the ass, and it's been the cause of no end of stress in the past.

     Then, once they have that under control, and can actually do the surgery, we have another potential hurdle in that he's prone to spontaneous pneumothorax, or a collapsed lung, and which happened on the operating table while he was having his spinal fusion done about twenty years ago. So there's that. The potential for uncontrolled bleeding is my least favorite part of the whole circus, though, and it's also the reason he'll have to have a more traditional incision rather than have this done laparoscopically; it doesn't make any sense to me, but apparently the potential for bleeding is less with a regular incision. Go figure.

     So here we are, trying to get this surgery and all the accompanying issues straightened out, all before this hole in his stomach gets any bigger, and I still can't help but wonder if we've somehow lost our way when it comes to differentiating between a this-can-wait issue and a we-need-help-now situation. That line, the one that's thinner for us than it is for most people, is constantly changing, moving. Sometimes he or I or both of us can see it clearly, and other times, we're taking a shot in the dark and hoping for the best. I'm still not sure where we're going to end up on this one, honestly.


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