Monday, February 27, 2017

Surrender the Night

     I jinxed us, absolutely. Not twenty-four hours after my last post, my husband and I were back in the ER, and we stayed there for fourteen hours, eventually coming home with no clear diagnosis, but a whole new set of worries.

     He texted me on Friday, just before noon, and said that he was having trouble breathing, experiencing dizziness, and a couple of other not-good things. I had no choice but to ask my boss if I could leave work early, so that I could take him to the hospital. He'd apparently already cleared it with his boss, but I will be the first to admit that I hate having to do it on such short notice. After an incident years ago with a former employer of his, I developed a deep-seated fear of one or both of us losing our jobs due to his disability. So, that's always somewhere in the back of my head, just waiting for an opportunity to come out and wreak havoc on my nerves.

     We both have amazing employers, so logically, it shouldn't bother me as much as it did, but fears and neuroses are about the least logical things I've yet come across, so here we are. Of course my boss didn't mind, so I left to go get him and take him to the hospital. It's been almost a year since we had to go to the ER for any reason, and I was really excited about that, hoping we could keep the streak going. With the symptoms he was experiencing, though, and the fact that he's got a pending surgery in the very near future for the hernia, there was no way we could avoid it.

     "Our" hospital, and by that I mean the one that we always go to, because his specialists are based there, has made a few changes to the way they do intakes in the ER, and while it's not quite the war zone that it was, it's still not great. It took two hours, give or take, for my husband to get back to a room, though he was seen more than once for various things before that point. When they had him in triage, the nurse discovered his oxygen was low, so when I walked in (I had to park in the further garage, since it was completely full in the ER parking), he was sitting in a wheelchair, hooked up to a tank. That's a new one for us, so there's that.

     Over the course of the next twelve hours or so, he was tested multiple times by multiple doctors for stroke symptoms, because that's what everyone was concerned had happened. My husband has had two TIA's in the past, and once you've had them, you're always going to be prone them, as I understand it. Plus, with the blood thinners, there's always a chance that his INR is off, and that's also dangerous, as it could also lead to a TIA. The ER physician called a neurologist in for a consult, and for awhile, it looked like they were going to admit him. Completely understandable, given his medical history and the suspicion of a neurological issue, but not something either of us really wanted to happen.

     I actually really liked the neuro who came in to see him, which was a pleasant surprise, given that any time we've been in the ER, it seems like it's about a 50/50 chance of getting someone who's nice, or someone who's an indifferent dick. I mean, we had one of those, too, early on in our visit, but he only came in one time, and then never showed up again. Probably that was due to a shift change, but I like to think it was because the powers that be knew I was already in a bad mood and didn't want to make me deal with a jackass who nearly hit me with the door when he came barging in, and talked over me, not to me. (My pet peeve in ER's, by the way.)

     They took my husband back for a CT with contrast, which I knew they were going to do as soon as they said they had to rule out a stroke. An MRI is much more detailed, but since he's so full of metal parts, my husband can't have them anymore, because he just reflects all over the place and they can't get a usable picture anyway. Also he's convinced that the magnet in those machines is going to pull his heart valve out of his chest, which is fucked up to imagine, but which will probably not happen. (I think St. Jude's valves are safe for MRI's, but again, I'm a paralegal, not a doctor, so probably don't take my word for it.)

     The CT came back clean, meaning they didn't see any evidence of stroke on it, which was one weight off our shoulders. The relief didn't last long, though, because in the next breath, the neuro told us that what they had found was that there's apparently a spot at the back of my husband's head that where spinal fluid is pooling. He didn't think it was related to the Marfan's, which is good, I guess? I mean, we're so used to everything being just another monkey wrench thrown by my husband's disorder that neither of us ever really considers something going wrong outside of it.  Our bad, apparently.

     The doctor let us know that since there was no evidence of stroke, that while he couldn't rule it out completely, it was way down there on his list of diagnoses, so he was going to let him go home tonight. Considering it was already almost one in the morning, I don't really see what the point of admitting him at that point would have been, anyway. The catch, though, was that my husband was going to have to follow up with neurological department, and they'd already notified his specialists' office of what was going on, so they could sort of monitor the proceedings.

     I know the moral of the story ought to be that we're grateful to have such a good hospital, with such competent specialists, right in our backyard, and we are. Every time my husband goes to the doctor, even for mundane things like getting his INR tested, I'm grateful that we have a strong Marfan community here in StL. The overrriding emotion at the moment, though, is not gratitude, but frustration that it seems like the Marfan syndrome isn't enough for us to handle, but now we have whatever this new spinal fluid pool issue is. I mean, it wasn't enough that we have 87 plates spinning in the air, now there's an 88th? Fuck that noise.

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.


Thursday, February 16, 2017

Baby, You Can Drive My Car

     Yeah, it's been a minute. To be completely honest, I'm still feeling overwhelmed by the recent presidential election, and I haven't figured out how to not let the circus in the White House encroach on my days, so I'm a little off-kilter. I'll figure it out, I just haven't quite gotten there yet; it's a terrifying time for those of us in the disabled community, and that's not hyperbole. Still, it's a worry to write about another day, mostly because when I try to get my thoughts in line, it comes out as nothing even close to coherent, so there's that. The more immediate issue is the fact that my husband and I have to replace his car, and it's about the least fun thing I've done in awhile.

     I came into the marriage with a 2007 Mazda6 I named Fancy (don't judge), and I love her dearly to this day. My husband drives her most of the time now, as his Pontiac died in the middle of the highway one July night about five years ago. We replaced that car with my current Mazda3, which is really too small for his 6'5" frame. I mean, he can get in it, but it's not comfortable, and he's almost wrecked it a couple of times, because the pedals in my little car were never meant to accommodate size 17 feet. So, the plan was, we'd just keep Fancy until the wheels fell off, and replace my car with something larger, so that he could drive either car and we wouldn't have to worry about switching cars. Plus, my 3 is a bit temperamental, and it made sense that we would replace that one first when the time came. Shockingly enough, things did not go according to plan.

     As it turns out, we need to replace the 6, and it's proving to be a little more involved a process than I've previously experienced. Obviously, we're looking at another Mazda6, because we're pretty loyal to the brand, and we know the car fits him. Beyond that, though, other little considerations have started cropping up that neither one of us ever considered before now. For example, could the car he drives have any effect on his back, good or bad?

     A Mazda6, while a full-size sedan, does sit lower to the ground than, say, a small SUV. It's no sports car, don't get me wrong, so it's not like he's trying to crawl out of the driver's seat from five inches off the ground. Honestly, though, even I sometimes feel like I need to be hoisted up out of it if I'm really sore from going to the gym or something, so I can only imagine what he feels like. A small SUV, like a Mazda CX-5, might be more suited to him, as the height means he's stepping out of it, not pushing up from the seat. I know this seems like minutiae, but I promise - it's the little things like this that can have a profound effect on someone's life. Anecdotal evidence - my father has a bad back, has for years. My parents bought a new car, one that had an adjustable lumbar support in the driver's seat, and suddenly he was able to go eight months or more between cortisone injections. I have no idea if it was the new car or not, but he swears it was.

     Something else that we're considering, which we both always considered a luxury waste of money, is a back-up camera on the car. Full disclosure - my husband and I were the first ones to lead the charge of, "Why does anyone need a back-camera? If you can't park it with just your mirrors, you don't need to be driving it!" He pointed out though, while we were perusing the dealership's website, that if we had a back up camera on the car, we wouldn't have to switch seats every time we pull our car into the garage, which is what happens now. His spine has a 20-year-old fusion that runs about eighteen inches, and he hasn't been able to turn around since he had it done. So, in our current situation, he pulls up to the garage, switches seats with me, and then I back the car in. I know it seems like a tiny inconvenience to most, but it's again one of those things that could make our lives just a tiny bit easier, and any help is welcome.

     The other thing that's led us to consider a small SUV instead of just another sedan is the fact that we absolutely have to consider what will be easiest to transport a wheelchair in. This is the part of the conversation my husband least likes to have, but it's the most necessary, in my opinion. The truth is, between the breaking down of his ankle tendons and the utter shitshow that is his spine, he can only comfortably walk about 100 yards unassisted on a good day. That means, if we want to go to the zoo, which he dearly loves, or the mall, which he decidedly does not, or any other thing that's not just walking from the house to the car, we need to take a wheelchair. He's finally given in on that point, though he will never accept it, and we're going to purchase a travel chair for him to use so that he can come with on family outings, instead of having to sit somewhere while the rest of us go explore.

     I absolutely hate the car-buying process, as does my husband, and I have to say, the additional considerations he has as a disabled person haven't made me love it any more. I do think, though, that if we're smart about the car we end up with, it could maybe have a trickle-down effect on the rest of our life, however miniscule.