Only When I Breathe (Day+79)

It has been a while since I checked in. Not much was going on. We went to Rockford last weekend for the State Cup soccer tournament. Paul's team won their Saturday game, which earned them a quarterfinal match against the defending state champs. The game was 1-1 at halftime, with both teams having missed some good chances. In the second half, the other team pulled away, but it was a good overall effort. Every year, his team closes the gap on the top teams in the state.

On Saturday night, I started having some pain in my left calf. I have had varicose veins there for a few years, but never any associated pain. Now, the veins themselves were tender to the touch, and standing shot pain from my ankle to my knee. One possibility was a blood clot in my leg. We checked in with my doctor, who gave me a few things to look for — redness, swelling, pain moving to other places.

Over the next few days, the pain got slightly worse, but it did not change in the ways I was supposed to be alarmed about. The worst pain was when standing after sitting or lying down. It was fine when I walked or jogged, and fine when sitting or sleeping. But if I got up to make a sandwich after sitting for a while, it hurt enough that I made some of my lunches and snacks while pacing around the kitchen.

By Thursday morning, my leg felt a little better when I got up. I could stand still without discomfort. Around the middle of the afternoon, I noticed a slight stabbing under my lower right ribs, and up into my right shoulder. It reminded my of last month's (possible) gallstone attack, though the location was a little lower and more to the side. It got more intense until, around 5:00, in consultation with my doctor, we decided it was time to seek medical attention. My doctor suspected a renewed gall bladder problem. All I knew was that every time I breathed, it felt like someone was twisting a knife under my ribs.

At the E.R., I get to use my "go to the head of the line" card — a transplant patient with a suppressed immune system does not spend time in the waiting room, so I am fairly quickly taken into my own room. Jan is there to support me, and our friend Bonnie is there to support Jan.

Getting out of the waiting room quickly does not mean that the rest of the night moved quickly. Since I am not bleeding or having a heart attack, the testing proceeds at a leisurely pace. (I'm not complaining.)

First, blood and urine tests. Given the nature and location of the pain and the recent gall bladder history, they are looking for signs that the gall bladder or liver are malfunctioning. After about an hour, those tests come back negative.

The pain continues to mount. I get some morphine through an I.V. they stuck in my arm, but it doesn't seem to do anything. They ask where the pain is on a scale of 1 to 10. I have a hard time answering this question. If I don't breathe, it doesn't hurt at all. If I try to take a normal breath, the pain quickly reaches a no más point. Is that 10? I can use my yoga breath training to use only the top third of my lungs, and that is a tolerable pain. I assume I have never felt pain at level 10. That might be reserved for prolonged and painful labor or having your testicles caught in an escalator. Since I'm still (except for my blood) a guy, and I don't bodysurf escalators naked, I don't anticipate having either of those experiences.

So, what is my pain? I can't push through it to breathe, but it isn't the worst pain imaginable. Is 9 too high? Is it even a linear scale? For most of the night, I go with 8, plus or minus 1. But only when I breathe. Looking back, that seems high. But maybe a given pain always hurts less in the past than it does in the present.

Next, ultrasound of my abdomen, again looking at liver and gall bladder, but also pancreas and kidney. Another hour or so, and more negative (good) results. Not only do all of the suspect organs look fine, but there is no sign of gallstones.

Next, x-rays of my chest. The protocol involves taking and holding a big breath, but that really is not an option, so I don't know that they get good pictures. The results are generally negative, but do show something that looks like pneumonia. I don't have the other symptoms of pneumonia — fever, phlegm — so it might be scar tissue from the pneumonia I had in February.

Next, a CT scan of my chest. Positive test results! Wait, that's bad. I have a pulmonary embolism, a blood clot in my lungs. I need to be hospitalized and started on blood thinners immediately. I don't know anything about pulmonary embolisms at this point, but it sounds scary.

One likely scenario is that a clot had formed in my leg, causing the pain earlier in the week. It, or some of it, broke loose on Thursday, relieving the leg pain but migrating through the circulatory system until getting lodged in my right lung. If I remember my high school biology correctly, this makes sense. On the way to the heart from the legs, the veins get larger and larger, so a dislodged clot has clear sailing. From the heart, the blood gets pumped to the lungs through an increasingly finer network of blood vessels, and a clot stands a good chance of getting hung up there.

The morphine still isn't doing anything, but my yoga breathing works. Or maybe the morphine is working, and if I didn't have it in my system, I would know what an 8 or 9 on the pain scale really feels like.

I get admitted to a hospital room around 3:00 a.m. I get a morphine pump, which means that every 10 minutes I can press a button and get a small dose. I can't detect any benefit, but whenever I take too deep a breath and remind myself why I'm in the hospital, I press the button. There is a timer built into the pump, so that if you press the button before 10 minutes has elapsed, it just chirps at you.

Not much happens on Friday. We keep adjusting the pain medication higher, to no obvious effect. I take some naps, since I didn't get much sleep the night before. Jan comes to keep me company starting in the mid-morning. My lunch is, against expectations, excellent: grilled salmon, brown rice pilaf with cranberries, broccoli. Dinner is a picnic courtesy of our friends the Morgans. After dinner, I take a walk in the corridors, with my I.V. pole. Just like old times. At this point, I have heard that I could be going home as soon as Sunday or as late as Tuesday. After my walk, the pain begins to ease.

After breakfast on Saturday, I get a full ultrasound scan of both legs, from ankles to groin. Having identified a blood clot in my lungs, we're searching for any more that might be hiding. The results are positive: I have a clot in the leg that had been hurting, and another in the other leg. Since I have already started the treatment for clots, there isn't much to do with the news. And they have decided that I don't have pneumonia, so I might as well go home.

The diagnosis means more medications: I am currently on an injectable blood thinner and a blood thinner in tablet form (coumadin). When my blood reaches the desired level of unclottiness,  I'll just be on the tablet form, but I will then be on that medication for months.

The lung pain is mostly gone, at the moment (Sunday night). Today, it only seems to occur if I have been lying down, and it's never as bad as it was on Friday.

Tomorrow we go back up to Chicago for the regular blood tests and check-in with the doctor. And there are some additional test results to get from my weekend visit to the hospital, to try to identify a cause for the clots. Having cancer (though usually not leukemia) is another factor leading to clots, as is being sedentary. I go for daily walk/jogs, and I move around the house during the day to prepare food or take medications, but maybe I need to take more frequent and purposeful activity breaks.

There are also genetic causes. My brother has had blood clots in his legs. Maybe I have a genetic predisposition to clots that was masked by my low platelet counts during the years I had aplastic anemia and now has a chance to shine. Bodies are very complicated!