Sunday, July 15, 2018

Days and Days

     I've had such a hard time coming back to this, as evidenced by my five-month hiatus. It wasn't any one issue in particular that led to my withdrawal, but rather that a whole mess of them had finally reached a boiling point and spilled over. I'm working through them, slowly, with the help of a therapist and an absolutely insane amount of journaling. This, too, this public accounting of what's happening with my husband's health and the havoc that it sometimes wreaks on our life, is painfully important, I've discovered. Without it, I've just become more and more withdrawn, and prone to, "Oh, it's fine." As that mindset is absolutely the last thing that I, as someone who struggles with anxiety, needs, here we are. Again.

      Now that that's out of the way, I can address one of the biggest issues that I was wrestling with in regards to this blog, and the interactions with people I was experiencing whenever I posted about a particularly gnarly day at the emergency room - why was there such a seeming disconnect with what I experienced and what I portrayed in my writing? Or, to be more accurate, why did I feel like there was such a disconnect? What was I doing wrong that led to raising alarms I never intended to set off?By that I mean that I was getting a lot of, "Are you guys okay?" and "I'm here for you if you need anything," which, to be perfectly honest, I did not understand.

     To me, those are the types of sentiments that are reserved for things like a death in the family, or if you receive a terrible diagnosis from your doctor; they're not for things like a hospitalization because your husband is seeping blood into his sinus cavities and no one knows why. And I know, that sounds completely fucked up, because why wouldn't your friends be concerned over something like that, right? Because, that type of thing is par for the course in our household, and the truth of the matter is, my husband and I have become desensitized to it.

     Of course, I've only just now really figured that out, and believe me, for someone who spends as much time in her head as I do, I don't really have an explanation for why it's taken me this long to see what's now pretty damn obvious. But, forest, trees, right? And that desensitization is, I think, what's been the biggest boulder in my path for the longest time, why I couldn't figure out how to do this anymore. Again, it's so goddamn obvious to me now that I can't believe it took me this long to sort it out, but better late than never, as the saying goes.

     I suppose for that explanation to make sense, I should tell you that I tend to be a person who doesn't have a lot of in-between in a lot of areas of my life. For example, my two favorite genres of music are bluegrass and heavy metal/rock, which are two opposite ends of the spectrum. My closet? Except for what I wear to work, the choices are either flowy, soft, Stevie Nicks-esque items, or things that make me look like some weird combination of a Nine Inch Nails/Sisters of Mercy fangirl. In short, there's a week's worth of daylight in between the two. So, with that in mind, it's easy now to see why I couldn't reconcile the two faces of my husband's disorder - it's both very, very serious, and also very, very mundane.

      That's the connection I couldn't make, the truth I couldn't figure out how to convey. So, I just retreated, and stopped sharing our day to day, because I couldn't get it to make sense to anyone but me. The reality of living with Marfan Syndrome is, for us, both of those things - serious and mundane, and all the emotions around both. What I eventually realized was that while they both tend to live in opposite corners of the house, it's still the same house. Serious and scary and life-threatening can happen at the same time as standard and mundane and just-another-day, and that's the piece I couldn't reconcile until very recently.

     I couldn't figure out why people were reaching out to me to offer support in light of events that I didn't think of as anything significant. (To be fair, my husband rarely sees things as super-serious, even when he's the one on Day 4 of his latest hospitalization, so it's not just me.) I couldn't see where the disconnect was coming in, because for me, this is just how it is. We're at the hospital enough that I have favorite parking spots in more than one garage, I have a color-coded planner to keep track of all of my husband's doctor appointments, and we just know that there's always a chance we have to drop everything and run for the emergency room, because maybe today is the day that it's not just back pain, but an aneurysm that's about to burst. I suppose when you live with a shadow in the room 24-7, you learn to adapt to its presence, until it no longer feels like a threat.

     I should have taken into account, though, that most people don't live with that shadow, and so what I view as a factual account of what happened and what could potentially happen, others read with horror, that this is happening to someone they know, and on the semi-regular. I couldn't see that, couldn't see why others didn't read my posts with the same mindset as I'd had when I posted them, which is an absurd assumption on my part. Why in the holy hell would they? More than that, how could anyone else possibly know where my head was at when I sat down? Looking at it now, I'm just amazed at my own obliviousness.

     The good news is that ultimately, I think I'm going to have an easier time of it, now that I've come around to the idea that something can be both concerning and not that big a deal at the same time; the two things can co-exist. I think, too, now that I've thrown it out there, that this is our normal ( if there even is such a thing), that maybe people will be able to read these posts with more of the spirit I intended. I mean, unless I'm unexpectedly gone from work for more than a day at a time, or I'm calling his parents, telling them to catch the next flight out of Charlotte and get to St. Louis, it's a pretty safe assumption that whatever happened is another bump in the road, rather than the car going off a cliff.

Sunday, February 18, 2018


     It's kind of weird to be posting again after so long - five months, to be precise. Looking at the timeline, I can see that my hiatus from this blog lines up with the point that my husband had to stop working and go out on medical leave. I suppose it makes sense that that would be the point at which I put this on the back burner, as the time since then has been essentially one large anxiety-ridden blur for me. My days are spent trying to stay on top of my caseload at work, taking care of my husband, and figuring out how we're going to get to the next week without losing our minds. I only feel half-insane at this point, so victory for me, I guess?

     The main problem I have with not writing for so long is that it all gets backlogged in my head, and it's hard to know where to pick up the threads. Do I talk about me, or him, or both? Do I get all existential, or just give a factual update? What subject do I even land on, because so damn much has happened that I feel like I could type until my fingers bleed, and it still wouldn't be everything? All of the above?

     Fuck it, we'll just see what happens.

     So, my husband was hospitalized about a month ago because of internal bleeding. As anyone who knows me/us knows, he's had a titanium aortic valve for more than a decade and a half, and that bit of aftermarket hardware necessitates the use of warfarin, a blood thinner, for the rest of his life. He's been taking it since the surgery was done, and while there have been a few hiccups here and there, like when an urgent care gave him an antibiotic for an infection in his elbow without realizing that that particular med does not play nice with blood thinners, it's mostly not the biggest issue we have to deal with. He takes it every morning, and gets his INR tested once a month to make sure he's where he should be, which is between 2.5 and 3.5, and we go on with our lives.

     Last month, though, he started feeling very tired, just completely wiped out. Usually, that means his blood is too thin, and the doctor needs to adjust his warfarin dosage accordingly to get him back on track. It's never been a big deal before, and we just assumed that's what was going on this time. He had his monthly doctor's appointment scheduled for a Friday, and thought he'd just get his INR tested, they'd tweak what needed to be tweaked, and he'd feel better in a couple of days. This time, though, was different.

     I came home from work on a Tuesday, and he met me at the door, slightly wide-eyed, and reported that his urine was the color of grape juice. We both knew that wasn't good, but it also didn't alarm us like it might someone who's otherwise healthy, because it could have been any number of things. It's actually happened to him before, and that time, it was due to a tiny, tiny kidney stone that he didn't even know he'd passed. Blood thinners tend to make everything seem much more dramatic than it really is, just by the nature of them making someone especially bleed-y, so we took that into account when making the decision to wait until the next morning to go see his doctor.

     I should also mention that he had a terrible headache, too, which is highly unusual, both because he's just not prone to headaches and rarely gets them, and also because he wears a fentanyl patch, which should have killed any thought of a headache before it began. He and I have been doing this long enough to be able to put two and two together and know with a fair amount of certainty that his INR was way off, and he was probably running thin. Still, that's not what qualifies as an emergency in our household, so he sent a message to his doctor via the app he has that he was coming by in the morning, and I let my office know that I wouldn't be in the next day.

     The process of measuring his INR is a quick one, as it's just a little stick in his finger, and then they put the sample in the machine, and it tells them where he's at. So, I had barely gotten my book open in the waiting room when he came back out, with a weird smile on his face, and told me, "They can't measure it." Um, what? I asked him to clarify. "They can't measure my INR. The machine only goes up to an 8, and when she put my blood in, it just gave an error message." Not good. Not good at all.

     Sure enough, the tech came right out and said that the nurse wanted him to go over to the ER immediately, because it's dangerous to be out and about with blood so thin. Alright, we can do that. His doctor's office is just a couple of blocks from the hospital, so we drove over, and walked straight over to the admissions desk. (After getting through the metal detector and security, because it's Barnes, after all.) As he's standing there, giving the nurse the intake information, I looked over, and noticed he had blood streaming from his nose, which was not a good look. The nurse grabbed a box of tissues to give him, and sent him right over to triage.

     I was damn near certain at that point that this was going to be an admission, not just a visit, and the triage nurse confirmed it. I mean, obviously she's not the one with the power to admit someone, but when you get a patient that's bleeding from his nose and mouth, and very likely bleeding internally, based on the information he just gave you, I feel like it's pretty safe to assume what's going to happen, and go ahead and give the patient a head's up.

     We hadn't been back in the treatment room an hour when they came to take him to radiology for multiple CTs. Of course, the biggest concern was uncontrolled bleeding, because the Marfan makes his connective tissue weak on his best day, and if the blood was now way past being able to clot semi-normally, that's dangerous. They tested it again in the ER, because their machine went a little higher than the one at his doctor's office, but his INR was off that scale, too, so we'll never know exactly how thin his blood was.

     The best way I can describe it as a kind of seeping, internally. Imagine if you were to pour maple syrup on a piece of cloth - it's not going to drip through, because it's too thick, right? But if you pour water on that same piece of cloth, it's just going to go right through, and you'll never be able to control where the water's going. In this analogy, the water is my husband's blood, and the cloth, his tissue/internal organs. That also explained his relentless headache - his sinus cavities had completely filled with blood, and it was seeping down into his mouth and nose, because it had nowhere else to go. Ew.

     Of course he was admitted, and over the course of the next four days, the doctors did what they needed to do to bring him back in range, though that process wasn't without its own complications. See, the way to get your blood to thicken back up is to introduce vitamin K, either orally or intravenously. In my husband's case, they tried the oral method for a couple of days, but it wasn't working fast enough, so they went the IV route. That got him back into a safe range and stopped the bleeding, but then soared right past "safe range" and into equally dangerous territory of too-thick blood. Because why wouldn't it?

     When they finally released him, it was with a prescription for lovenox, which is a fast-acting, injectable blood thinner used to prevent clots. My husband has had a transient ischemic attack before, which some people refer to as a mini-stroke, due to his blood being too thick, and clotting up around his heart valve, so the doctors were taking exactly zero chances this time around. He injected himself with the lovenox twice a day, as directed, while also taking his regular dose of warfarin, in an effort to get his INR both back in the appropriate range, and stable. This went on for about a week and a half, until his doctor felt it was safe to stop the injections.

     At this point, it's about two weeks after the initial incident, and no one has any idea why it happened in the first place. The only other time he's been that far out of whack was the aforementioned incident with the antibiotic, and even then, the INR machine could still give the doctor a number; it was just really, really high. This time, though, no one had any idea how thin his blood actually was, and, even scarier, how it happened in the first place. He had taken no new medications, his dosage on his current meds hadn't changed, and neither had his diet. (If you don't keep your vitamin K intake at a pretty steady level, it can throw your blood thinners off. This actually works in my husband's favor, because it means he doesn't have to eat spinach, which he hates. So, silver lining.)

     It got to the point that the doctor asked me to go home and get his bottle of warfarin, so they could look at the pills and make sure they really were what they were supposed to be, and a pharmacy tech hadn't accidentally put the wrong dosage in the bottle. Nope, they were right, and the number of pills in the bottle was correct, too, meaning my husband hadn't accidentally taken too many. (He's currently struggling with some cognitive issues, and doesn't always remember to take his meds; I've taken over helping him with this.) At the end of the day, nobody has any idea what the hell happened, which is unsettling, to say the least.

     He'd been doing okay for the past week and half or so, and we both thought this episode was behind us, but then he woke up Friday morning with a mouthful of blood. His doctor had increased his warfarin dose since the over-thickening caused by the vitamin K, and we both knew immediately what was probably going on. Sure enough, when he went to the doctor to get it tested, he's once again off-the-charts thin. I thought they would send him back over to the hospital, but the doctor told him to stop his warfarin until Monday, and then come back for a retest. I suppose since they at least know why it's happening now, they're not going straight for the hospitalization route, but it still makes me uneasy. The whole goddamn thing makes me uneasy.