Saturday, November 9, 2013

Should I Stay or Should I Go?

     I think I've adjusted pretty well to life as a North Carolinian; I mean, I'm not making road trips back to Missouri once a month like I did when I first moved here or holing up in the house with endless episodes of Buffy the Vampire Slayer and a supply of Krispy Kremes to distract myself from the homesickness. So that's progress. Seriously, though, I'm getting to a point that I initially couldn't imagine ever reaching and that's a place where I know my heart's going to fracture if I end up leaving here and heading back across the Mississippi. The possibility of doing exactly that has come up in conversation with my husband, more than once. I mean, if we ever do get to start a family, I don't know if I can do that without being able to take her ('cause when we talk about it, she's always a she) to the places that I consider home, my roots. That's not the only reason we'd consider going back to the midwest, though - there's also the tiny matter of my husband's healthcare choices and the options available to him.

     The ridiculousness that was our July this past summer made us both really pause and reflect on what kind of healthcare my husband could really expect here in Charlotte. See, Marfan's Syndrome is considered a rare genetic disorder and as such, it's one that not many ER doctors have much familiarity with, if they have any at all. That's absolutely not a dig at the healthcare systems that we have to choose from in Charlotte; it's just a fact. There's nowhere in this city that we can go when Marfan's-related weirdness pops up and we need specialized help.

     When we were struggling through this summer, with my husband being hospitalized for days at a time and no answers available to us, readily or otherwise, I started looking for help elsewhere. I started at Durham, with Duke University Hospital, because that's where my husband's cardiologist suggested we look for a new specialist when the decision was made to move out here. I knew Duke was no joke when it came to hospitals and research, as they're obviously attached to a big-damn-deal university, but I didn't realize they actually had a Marfan's clinic; this was a heartening discovery.

     While my husband still hasn't made an appointment to go get his yearly once-over by the doctors who know what monsters they're supposed to be looking for, it's still comforting to know that that resource is within driving distance. I mean, it is if we're not dealing with an acute issue. If it's something like what we experienced this summer, with my husband in and out of the hospital and a seemingly neverending series of doctors from every corner of the medical field testing out different theories of what-the-hell-ever trying to solve the puzzle of what was wrong with him, then yeah, I guess we've got time and specialists aren't all that essential. In a different scenario, though, it could make all the difference.

     Remember when my husband had that mini-stroke (more accurately known as a transient ischemic attack), about eighteen months ago? Okay, well that was one of those times when we needed the doctors who knew him, knew what the hell I was talking about when I told them he had Marfan's, and knew who to call to answer any questions they couldn't. In that particular case, that person was Dr. Alan Braverman, who was not only my husband's cardiologist at the time, but also happens to be the director of the Marfan's clinic at Barnes-Jewish Hospital back home in St. Louis. And that right there is one of the reasons we have to entertain the question, "Should I stay or should I go?"

     I hate that this is even a thing, because to discuss it like this makes it almost seem like I hold up the healthcare in St. Louis to some unreachable level, when that's not the case at all. (Yeah, the specialists that my husband needs are there, but the ER waiting room at BJC is regularly only slightly short of a nightmare and that's absolutely no fault of the staff's; it's just the way things are sometimes.) It's more a matter of who has what at which location. Follow me? To get the type of specialized care he likely needs (and I phrase it like that because we never know if it's going to turn out to be a semi-routine issue or something no one can identify) if he has another random t.i.a or if he, God help us, shows up with an abdominal aneurysm, I would have to get him to a hospital over two hours from our current home, instead of 15 minutes away, as would be the case were we back in St. Louis. Worst-case, I suppose he could be stabilized at a local hospital and then transported to Durham, but it makes both of us uneasy to know that's our best option if/when the bomb drops.

     Hopefully, this isn't something that's going to have to be addressed anytime in the near future. My mother-in-law and I have talked about it, though, and even she, who rarely misses an opportunity to tell us how happy she is that we're here, that her son is once again within easy-visitation distance, has asked me more than once if I didn't think that maybe we should go back to be closer to his doctors at Barnes. I don't know. I have no idea if he and I are making too much out of this, or if we're just choosing to not see how serious a problem it could potentially be until we're in the thick of it, at which time it's too late to do anything but wait and see what happens. 

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