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.