The Whole Story

OK. So some of you already know the whole story. Some of you know most of it. Some of you know a little. And some of you may be surprised to hear this happened at all... :) I've been working on this post for some time, but in a desire for it not to turn into a LOT of posts, I just saved it until I could tell the (almost) complete story...

On February 21, we returned from visiting Tim's grandma in Detroit. I sat crammed in the last row of the plane in the window seat the entire time. On February 22 at something like 3:30 in the morning, I woke up as I turned over in my sleep and thought, "Man, my arm's asleep. No, Christine wake up some more... it's not asleep... it's something stranger than that..." All just in my head. So I sat up in bed. Something was clearly weird, so I woke Tim up (by shaking him with my arm that wasn't "asleep"). He looked at me. And he said, "What's wrong?" And I tried to say something. Probably something like "My arm's asleep" or "I'm not sure" but I could not talk. It was very strange. The part of my brain that formed words to come out was working. It was even sending the signals to my mouth for my mouth to talk. But nothing (NOTHING) came out but "Unnnhhh." Tim said "You can't talk?" So I shook my head. Then I pointed to my arm, which was still "asleep." But I was awake enough now to notice that it was more than asleep. I couldn't feel it. Tim picked it up and it just fell down. He said, "Can you smile?" I could smile halfway. Clearly, at this point, we both knew what was happening. Tim called 911 and spoke the horrible words "My wife is having a stroke." Things actually quickly started to get better then. I started to be able to move my arm a little. I could scoot to the side of the bed and put on real clothes before the paramedics got there. I even got out something that must have sounded close to "It's getting better." (Which generated a response "You're still going to the hospital.")

The firemen were the first to arrive. There was a totally in control guy who had clearly been doing this thing for some time. That was very reassuring. He checked me out completely. I could mumble some things to him (for whatever reason, I thought that it was a good time to ask them about how they liked their new fire station...). Then he asked a newbie to take my blood pressure. He tried (and I am NOT exaggerating) at least 4 times (I could feel enough while he was doing it to get a reasonable estimate of my own blood pressure) before he told the in control guy "Hm. I just can't get it. But I'm sure that the bottom number is 140." Now, granted, I was the patient, and I was experiencing something abnormal. But I was absolutely positive that the bottom number was NOT 140. But that's when the paramedics walked in. So they took over... did all of their tests. Put me on their stretcher, and took me out to the ambulance. They did several little tests in the ambulance, put in an IV line, and took my blood pressure. She said something like "Does 110/70 sound more like it?"

By the time we got to the hospital, I actually felt fine. Tim and Maya showed up just a little behind me, and my dad and sister just a little behind them. Dad and Jocelyn took Maya home for breakfast and then dropped her at school.

In the emergency room, my speech was still a little off... I felt like there was some cotton in my mouth and I couldn't talk as fast as I usually do. Tim could tell, but no one else could. Like any emergency room, things unfolded slowly. They did an MRI of my head pretty quickly. And the result from that was good... there was no indication of anything on the MRI. (Which means that, if it was a stroke, it resolved before it caused any apparent damage, which I judge as good.) Then there was a steady stream of blood tests, a full body ultrasound to check for blood clots, and who knows what else. For hours and hours and hours. Then the ER doctor came in and said something like "Well, everything looks good. This kind of thing sometimes happens, but you look like you're doing fine. We're going to do one more test; we don't expect to find anything, and then you'll get to go home." They shouldn't be allowed to say things like that. And of course they did find something. But I'm getting ahead of myself.

The test was an echocardiogram (just a fancy way of saying "ultrasound of the heart"). The technician that came in to do it was great--she really seemed to be excited about her job and wanted everyone to look at the pictures. So we did. It included a "bubble study," which is just ingenious. They take a syringe of saline and "agitate" it to make it a syringe of bubbles in the saline. Then they inject the saline into the IV and watch the heart while it moves. They know that they inserted the bubbles into a vein; they expect it to come into the right atrium, go into the right ventricle, go to the lungs, come back to the left ventricle, go to the left atrium, and then head out via the aorta. So they inject these bubbles and watch the atria. It's a really great picture of the two atria side by side. So you see the bubbles come in. You see the valves contract, and you see the bubbles move into the right ventricle. But (and there's always a but) in my heart, you also saw the bubbles (lots of them) pass directly into the left atrium. So this was non-oxygenated blood going from the right side of my heart to the left. Every time my heart beats. And no one really cares about the non-oxygenated blood, but the worry is that blood clots from the venous system (likely legs) can get through that hole and go to the blood vessels that feed other places (brain, lungs, gastrointestinal system, etc.). Once there they can get jammed in the capillaries and cause all different kinds of problems. Not to scare anyone, but it turns out that every fifth person that reads this has some kind of hole in this spot in their heart.

So now I have a problem. And they want to "monitor" me longer to make sure nothing strange happens again. So I was admitted to the hospital and assigned a SLEW of doctors. There's a cardiologist, a neurologist, and a hospitalist. (I don't even know what a hospitalist is...) The information I get as to what happened is one of two things. Because I'd been on an airplane and taking birth control pills, I was predisposed to blood clots. It's possible that a small blood clot formed, moved through the hole in my heart, went up to my brain, caused the stroke symptoms, and dissipated before any noticeable damage was done. Or... it turns out that there is some fraction of the population that gets stroke-like symptoms as part of a migraine headache. Since I have migraines, it's possible that it's the latter. What's worse is that it is impossible for anyone to tell me which it is. If it's the former, there are a couple of treatment options. If it's the latter, well, it might happen again. And every time it happens... I'll have to rush to the hospital to get an MRI of my head to make sure it wasn't a "real" stroke. And there's no treatment if it's the latter.

So the course of action agreed to by me, Tim, and all of the doctors was to assume it's the former case since it's a possibility that's not at all unlikely and there's something we can do about it. The treatment options presented to me that first day (by the neurologist) were: 1) aspirin as a blood thinner for life; 2) coumadin as a blood thinner for life; or 3) repair the hole in the heart. But she really wanted to do some additional blood tests to make sure I didn't have a clotting disorder of some kind. If I did have a clotting disorder of some kind, then I would need to be on blood thinners anyway, and that would reduce the options. So the decision was made to stay overnight in the hospital, do the blood tests (which would take 2 weeks to come back), and start blood thinning medicine until the blood tests came back. If I could get through the night without any incident, they would do an esophageal echocardiogram (an ultrasound of the heart where the ultrasound probe is stuck down your throat) in the morning and let me go home. Also, after speaking more with the cardiologist, the options were reduced to two... aspirin therapy for life was no longer an option. So they started me with a blood thinner called Lovenox (which required twice a day shots in the stomach) and Coumadin at the same time. Coumadin has to be monitored regularly by a medical professional because the dosing is different for different people and changes with diet. I had to continue the Lovenox until the Coumadin levels "stabilized."

The night passed completely uneventfully, and in the morning I had the esophageal echocardiogram. The echo technician convinced the cardiologist that he should let Tim watch the procedure. Which was cool, though I wasn't super thrilled about the thing down my throat. There was no new information from the test, just a better picture of the hole they already knew was there. So I went home. About midday. Just as an aside... no particular commentary on the state of health care in the US, just a statement of fact... for these 36 hours in the hospital (NOT including the doctors' fees, NOT including the diagnostic tests, NOT including the ER stay, NOT including the ambulance), the hospital "charged" my insurance company more than $19,000. (Of course the insurance company, said, "No thank you, we'll only pay $5,000, and everyone was fine with that.)

Anyway... now days pass. Still getting the twice daily shots in the stomach and seeing the nurse to check my Coumadin levels once a week. And then the blood test results come back. So I schedule an appointment with the neurologist (she ordered the blood tests after all). So three weeks after the "incident," we met with her. She informed us (after we paid our office visit fee to see her) that the clotting test were "abnormal" but she wasn't qualified to interpret the meaning of the abnormality. So she referred me to a hematologist. I had to wait a couple of weeks to get in to see him. We met with him (after we paid his office visit fee), and he was "underwhelmed" by the anomalous test results, but he wanted to rerun them just to be sure. So we had to wait ANOTHER couple of weeks for those results.

Finally, everyone was happy that I did not have a clotting disorder in my blood and that option three for preventing another "incident" was actually viable. The repair of the hole in my heart involved a catheter based procedure. The doctor inserted a pair of catheters through my groin, into my femoral vein, straight up into my heart. Inside one of the catheters was a device designed to plug the hole (see the videos here), and through the other an intracardiac echocardiogram (an ultrasound probe inside my heart). At the same time, there was constant fluoroscopy (a low-level xray) so the doctor could see what was going on inside. They gave me some "happy" drugs, but I did get to watch the entire procedure on the monitors, and I remember most of it. In the end, the cardiologist was able to place the device without much trouble (he later referred to the procedure as "perfect"). I had to lie still for an hour, have a nurse sit on my leg to stop the bleeding, and then spend another four hours lying still to make sure the catheter entrance didn't start bleeding. I spent another night in the hospital just for observation. The next morning they did a couple of more tests, and then sent me home.

Since then (two weeks ago), I've felt absolutely fine. It's a bit weird to think about having this piece of metal inside my heart, but I don't "notice" it. My heart beats normally, and on recheck the cardiologist is happy with my status. The device basically provides a scaffold on which heart tissue can grow in; after about six months, we'll be able to see whether the heart tissue has grown enough to cover the hole. One upside of all of this is that there is significant anecdotal evidence that people with migraines who have this procedure done have their migraines go away entirely. So let's hope for that.

The doctor has cleared me to go to South Africa on Saturday. When I return, they'll do another echocardiogram to see how its going, and then another one at six months.

So that's the entire story, at least up to the present time. I'll share brief updates if anything changes...