Antiphospholipid syndrome

Perhaps you are wondering, why did this happen to her and could it happen to me?

The medical personnel were certainly asking the first question when I came in last Wednesday because, while thromboses (clots) and emboli (clots that travel) are fairly common among people who are ill, inactive, or suffer from certain disorders, the bodies of healthy, active people like me don’t usually “throw clots.” 

While they were still trying to figure this out, I asked My Son the Doctor how he would go about determining the cause of this episode. He said he would ask all the questions they had been asking and then test for certain genetic-related abnormalities. The next morning the physician treating me told me tests had shown that the antiphospholipid antibody was present in my blood. This antibody can precipitate an autoimmune response, principally abnormal clotting. It may be hereditary. It doesn’t go away. I am stuck with the antiphospholipid syndrome and anticoagulant medication (likely Coumadin) for the rest of my life.

My mother probably had antiphospholipid syndrome. One of my brothers may have it. A niece told me in a response to my Facebook post that she had a deep venous thrombosis several years ago. So I will tell my family to watch out for certain symptoms and get prompt medical attention if they show up.

The antibody is present in perhaps 5% of the population but not everybody who carries the antibody has clotting episodes. Or, as in my case, they may wait to start till later in life. You don’t want to take preventive medication unless you have an actual incident, because the anticoagulants carry the risk of bleeding. In order to balance the risk of bleeding against clotting your dose must be carefully calibrated. That means very frequent blood tests. A big pain.

Also, if you are on anticoagulants you will want to avoid injury as much as possible, especially head injury, and that means no football (not a problem for me) and probably, oh dear, no fast bike next year that could pitch me for a fall while I learn to use clipless pedals.

The other thing you might have to think about is how much spinach or—yikes—kale you are eating in a given week. Not because either is bad for you; it’s just that the vitamin K in leafy greens can counteract the anticoagulant. So the best thing to do is to eat the same amount every week so you don’t have to change your dose.

If you read my blog you might notice that 1) I like kale a lot and 2) I have been eating a lot of it recently because it is still in season. Perhaps all that kale in my system is even requiring extra doses of Coumadin to get me to the right anticoagulant level. This is not impossible, the doc says. Kale is not responsible for my pulmonary emboli, she assures me, but it could be costing me an extra day in the hospital while they elevate my dosage to counteract it. And then, if I don’t keep eating that much kale year round, my dosage will have to be reduced accordingly.

As I think about all this I see how this diagnosis is making subtle attacks on some aspects of my lifestyle that I considered ultra healthful as well as pleasurable.

Biking! I was really getting into that and anticipating getting over my fear of falling. Uh-oh, as my 17-month-old granddaughter would say. I must go back to being afraid of falling.

I must eat my kale and other green leafies in calibrated weekly doses. Can you imagine? So much for the idea that you can never eat too many veggies. This also makes strictly seasonal eating, which I was striving for, quite difficult.

Antiphospholipid syndrome is why I almost died at the Y last week. It won’t happen to you, unless it does. And then, like other curveballs life throws, we deal with it.

The good news is, I go home today!

What happened next

Today I saw just what the doctors meant when they told me that the clots in my lungs had been large, extensive, and serious. I looked at the CT scans that were done when I was admitted and my son, a radiologist-to-be, was here to interpret them for me. It was sobering. 

Peering inside the body with Dr. Myers

Skip the next two paragraphs if you hate medical details or they make you queasy.

The huge ugly clots were nearly blocking my pulmonary arteries, distending them and extending way into the lungs. Some were even saddling the branch between the arteries—the worst kind, the sort that can kill you instantly. They were straining my heart, and no wonder I was gasping for breath for at least the few minutes until I was put on oxygen. Because of the stress on my otherwise healthy heart the doctors decided to do a somewhat risky procedure the day after I was admitted.

The experts in Interventional Radiology inserted catheters through the femoral veins in my groin up through my heart and pulmonary arteries, where they dripped powerful clot-busting medication directly on the clots, dissolving them within 24 hours. During that time I lay flat on my back in the intensive care unit, soaring on excellent painkillers over the constant ding-ding-ding of calls and monitors and the noisy chatter of staff. The ICU nursing station seems to be a social gathering place.

After spending one (unmedicated) night too many in the ICU, waiting for transfer to intermediate care, I was ushered to a large private room in a new unit. It is a luxury hotel compared to the ICU. Jesse was able to get two consecutive days off from his duties as a first-year resident in a suburban Chicago hospital and came with his wife Linnea to hang out, along with Vic.

I feel 110 percent better but I am confined until I reach a proper level of the blood thinner that I will have to take for the rest of my life. Thus I have been able to enjoy a bit of a forced vacation surrounded by family.

Last night we played our favorite game, Apples to Apples, which involves matching adjectives to people and phenomena and taking turns judging the best matches. It can be arbitrary and crazy. The game works best with at least five players, but we were only four. Emily Dickenson was staring at us from my Kindle screen. I suggested Emily might join us as our fifth player. So she did. I propped Emily between my legs and every fifth round we had to make our choices based on Emily’s sensibilities as a 19^th century reclusive poet. Emily won three rounds, tying with Vic and Jesse. We laughed hard and I didn’t bleed from my nose or any of the many holes that have been poked in my body over the past five days.

So far so good.

Next maybe something about antiphospholipid syndrome, my diagnosis.

 Emily and me

How I almost died in yoga class

It was in the middle of Tree Pose. I had stood on my right leg, left foot planted on my calf, arms raised gracefully overhead. I switched to my left leg. Suddenly I started swaying for real and I was gasping for breath. I descended to my mat as gracefully as I could, hoping no one would notice. After a minute, I hoped someone would notice and Rhonda, the teacher, did.

If you’re going to collapse in yoga class, you’d want it to be in Rhonda’s class. She’s not my favorite yoga teacher at the Y because she’s chatty and her entertaining tales of her junior high art students can disrupt the flow, so to speak. But she’s warm and motherly—my favorite person who teachers yoga. Rhonda was right on it. The paramedics were there within minutes.

As soon as I got some oxygen I began to feel better and I was embarrassed to be causing a scene. I just wanted to go home and rest. But Vic wasn’t with me. He was in Chicago and I couldn’t very well drive myself home. Besides, the folks at the Y insisted I go to the hospital. Standard procedure. They promised to track Vic down and call a local friend, even though I couldn’t remember any phone numbers because who needs to remember phone numbers these days? They’re all programmed in. I didn’t have my cell with me.

I remembered to ask the paramedics to get my purse out of the car. I was glad they didn’t turn the sirens on as they drove. I’m fine, I’m fine, I kept saying.  No, I didn’t have chest pain—well, maybe a little heaviness. I was breathing normally. Maybe I was just dehydrated. I was more worried about getting hold of Vic—to reassure him. I had the paramedic call Joanna—the only phone number I could remember—and get Vic’s cell number but I insisted the paramedic tell her not to worry.

I managed to call Vic from the ER. The Y and Joanna had already reached him. I sent him on a wild goose chase for our friend Sarah’s phone number but Sarah showed up a few minutes later. The Y had reached her, too.

I finally decided to stop trying to manage everything and let other people take care of me.

A nice medical student took my history. I have no health problems, I am on no medications, and this has never happened to me before. Well maybe almost. The Friday before, also at yoga, I found myself breathing harder than I thought I should be but it was a strenuous class. I had exercised moderately since then. No problems.

She thought for a minute and then asked if I had ever had any blood clots. Indeed, two months ago I had an inflamed area on my right leg that my doctor said was a superficial clot that would go away by itself. I told him my mother had had several pulmonary emboli—the clots had traveled from her legs to her lungs. He said not to worry. Those were “deep vein,” not superficial, thromboses.

The student and the ER doc thought my problem probably was not pulmonary embolism—I wasn’t sick or in pain. But they’d do a CT scan just to rule it out.

Minutes after the scan the doc came back and informed me that I had extensive clots in both lungs.

I’ll write more in the next few days. But just so you know, this is me today in my little “office” in my deluxe room in the cardiac care unit at South Bend Memorial, with my IV bag,  computer,  tea,  phone,  Kindle,  eye mask, and ear plugs. Family is here. I have everything I need.

 I’m fine—really. I wasn’t last Wednesday. But I am now.

Kale massage

This is not about some new spa treatment. Rather, it is about me massaging the kale.

(But the spa treatment may have possibilities. Imagine getting a rubdown with handfuls of the stiff curly variety.)

The kale is still growing strong here in southern Michigan and I have access to an unlimited supply. So when directed to bring a salad to a potluck yesterday I immediately thought of kale. But raw kale is too tough for salads. Chew, chew, chew, and then chew some more!

So when my daughter mentioned that a friend had served up a delicious kale salad into which she had massaged the dressing, I was intrigued. Later I woke in the night with a vision of a kale salad massaged with some leftover apricot vinaigrette I had on hand. I would top the salad with oranges and toasted almonds.

The vision was so yummy that it nearly kept me up the rest of the night.

Yesterday I dived right in and massaged that kale into a yummy salad. My technique was messier than it needed to be but the results were terrific. Today I googled “massage kale” and found out how I really should have done it and that, of course, many cooks had already tried this.

First you grab those kale leaves and pull them off the stringiest part of the ribs. (Well, first wash and dry the kale and your hands.) Then you cut the leaves into thin ribbons and put them into a big bowl with whatever dressing you are using. You grab, squeeze, and rub that kale until it turns a rich dark green. It becomes tender! Add whatever other ingredients you desire to the salad.

There are many recipes for massaged kale salad on the internet. Here’s mine.

Practical Mystic’s Massaged Kale Salad with Oranges and Almonds

A big pile of kale, enough that the shredded leaves fill a big mixing bowl.

Dressing: Soak 3-4 dried apricots in hot water to cover. Blend them into a puree, adding water as needed. Add 2 T. vinegar (I used pomegranate flavored wine vinegar) and ¼ c. olive oil, plus up to 1 t. salt to taste and some ground pepper.

Pour about half of this onto the kale and do the massage thing for a minute or two. Taste. Does it need more dressing? Vinegar? Salt? Pepper?

Place in a nice wide salad bowl and top with 1 or 2 oranges chopped small and 1/3 c. toasted sliced almonds.

The bowl was practically licked clean by the end of the church potluck. Tonight I’m going to try a salad of massaged kale with avocado and sunflower seeds.

Crashing

I always get to a crash point after a flurry of activity like hosting Thanksgiving. This doesn’t mean that I don’t like the flurry. It just means that there is a rhythm to my energy level and inclinations. Some people seem like Energizer bunnies but I think most of us have our ups and downs.

I’ve learned to expect the crash. Monday is prime crash time for me but this time it held off until Wednesday, yesterday. It started when I woke at 3:30 am and couldn’t get back to sleep. So I pulled on a robe and warm socks and went downstairs and sat in the dark. I would have made a fire but there was no wood inside and I couldn’t bear the thought of carrying wood in before daylight. I was alone. Vic was already off in the city for his three days of work.

I didn’t feel like turning lights on. I made tea. I can do that in the dark. I opened my computer. I can do that in the dark, too. I looked at a volunteer editing job I had started the evening before. I made a few changes in it. I kept working on the job. I did more and more. Day broke and I still didn’t go out for wood for a fire. I didn’t get dressed. I had no energy for either of those things. I kept editing, went through 6 short pieces by 10 am. I ate toast and cheese. Then I turned to my paid work and it, too, happened to be editing, more or less. I did that for a few hours, finished a report, a proposal, and an e-letter. I warmed up leftovers for lunch.

I never did get dressed or carry in wood. Getting dressed, making a fire, even talking were beyond my capacity. On the one hand I was extremely productive. And yet I felt like I had totally regressed into some kind of stuporous hermit mode.

Editing is something I can always do, no matter how bad I feel. For me, editing is like putting together a jigsaw puzzle or doing a crossword. It is low-grade problem solving.

I exhausted even my capacity for editing and spent the rest of the afternoon and evening reading and watching a movie. I did not go out to yoga. I did not get the mail. I did not pass Go or collect $200.

If Vic had been here I might have cooked a decent meal. Cooking for two, like editing, is something I can do, no matter how bad I feel.

I shed my robe and socks, fell into bed early, and slept 10 hours. This morning I carried in wood, made a fire, and started laundering sheets from the guestrooms before I even made tea. The sheets are drying in the cold sunshine. I have cleaned up the kitchen. I am well into my paid work, doing things that are a tiny bit difficult.

I have identified at least two productive activities, cooking and editing, that I can almost always do even when I am crashing. Fortunately, my life provides plenty of opportunity for both. They don’t really make me feel better, just less bad. I don’t have to look back at a wasted day.

Is resting a waste? I don’t think so, even when it involves sogging out in front of the TV. Crash days make me grateful for the little surge of wellbeing that comes with a more normal day, like today.

How do you crash?

There was thanksgiving

“Why do we have to be so nice to each other?” my brother demands as he comes in the door on Thanksgiving. “Why don’t we pick fights like those families on TV? I’d like to see a real fight, and you know what? It should end up with a food fight!"

He is joking, of course. Or is he? Five minutes later he collars me in the dining room and vents about something that is going on in the living room. He is genuinely angry. Fortunately, the episode is confined to my brother and his wife and me; the living room is just out of earshot.

Ruffled feathers are smoothed by mealtime and we all proceed to be nice to each other through the bounteous meal and desserts. I breathe a sigh of relief, of thanksgiving.

Later I find the butternut squash with brown-butter sage and almonds languishing in the microwave—the only casualty of that confined, pre-dinner conflict. But it’s not the first time I’ve forgotten a dish.

Is family pleasantness a veneer? I choose not to think so. I choose to think of conflict as the exception, not the rule. Rather, I try to make it the exception. I grew up in a family that argued. We loved each other, for sure, but we didn’t say so. Instead, what came out of our mouths was good-natured teasing, liberal criticism, and a lot of argument. Over the years I have discovered, sometimes painfully, that the family culture created a default mode in my own manner that is not very helpful in building good relations, either within the family or outside of it. I’ve tried to become nicer, warmer, not so quick to argue. I don’t believe in covering up genuine differences. But I am trying to be more openly affirming than critical, to cultivate love rather than grow the seeds of conflict that are always there. And it's not just me. My brothers have become sweeter, too.

What I believe is that there is as much truth in love as in conflict and one can choose where to put one’s efforts.

In the days before Thanksgiving, the listserves produced tips on how to talk about conflict-laden topics like global warming around the extended family dinner table. Only one instruction made sense to me—to listen, listen, listen. Nobody is persuaded by fact and argument. Everybody already knows what everybody else thinks and one dinner discussion isn’t going to make a difference. Instead, it’s a time to pull out whatever genuine love and affection may be lurking beneath the surface.

Still, the kerfuffles can come out of left field, as this one did. Everything else I’d been worried about before the feast turned out to be a non-issue. The fleas seem to have disappeared; the babies were well, adorable, and adored; and the forgotten squash went into the freezer. Vic will take it to his men’s group Thanksgiving dinner this week. Saved him some cooking time, anyhow.

Hearing again

Yesterday I got a hearing aid. The other one broke when the audiologist was programming it. I’ll pick it up today or tomorrow.

Even with only one there is a marked difference. I hear the clicking of my typing, the swish of my pants as I pull them up, loud crunching when I eat my toast. My footfalls sound the same because the aids don’t enhance the low sounds, where my hearing is normal. But I hear every squeak of the floor. The turn signals on the car tick loudly. The little song at the end of the wash cycle chirps merrily, quite audible from a floor up.

I didn’t say “What?” to Vic once in our, as usual, minimal conversation last night. Most remarkably, however, I sat in the sauna last evening at the Y and followed a whole conversation between two girls without looking at them once. It was the usual low, mumbled, fast teenage talk, which I am sure they have adopted unconsciously to keep their elders out of the loop. But I understood nearly everything. It was all I could do to keep myself from interjecting, “But I think you have to go to medical school to become an anesthesiologist.”

My powers of speech comprehension--which is a matter of attention as well as hearing--have been sharpened by the years of hearing loss. In fact, the audiologist told me when she gave me the test that my 80-85% speech comprehension was remarkable, given the degree of my loss. So I have regained the sharp ears (ear, today) that helped make language learning easy for me in the past. No wonder I had trouble understanding African French last week, which used to be easy for me. I’m sure I could pick it up much quicker with the aids.  That is the great gift of good hearing, which I was losing, the ability to understand other people’s languages, whether it is Teenage English or heavily accented French. And with it, the ability to eavesdrop.

I love to eavesdrop. It is part of my nature. I am a born observer, a quiet hider in corners, watching the world pass, trying to understand it. I am an Enneagram 5. I have grown out of that shell, of course, and become an active participant in the world. I can be outgoing for long periods of time. I am happy to be in charge, a better hostess than guest. But I still find comfort and pleasure in being the silent observer. It’s my default mode—either downright solitude or solitude in the midst of society. It’s why, in years of going to the Y, I have never struck up a friendship there. I’d rather indulge my penchant for watching people. And now, listening to them as well.

I broke that pattern of solitude-in-company the other day at the Y. Rather, someone else broke it for me. I was wearing one of my bike trip T-shirts and a lithe, gray-haired woman spoke to me as I was walking down the hall.

“Do you bike?”

We talked for 15 minutes and exchanged email and land addresses. We will bike together next season. Well into the conversation, I noticed that she was wearing hearing aids, the all but invisible kind I was about to get myself. I could see them only because her hair was clipped very short.

I think I’ll let my hair brush the front of my ears just enough to hide the tiny, transparent tubes. Although I am telling anyone who cares to read this blog that I wear hearing aids, I’d rather be stealthy about it in public. I want them to be invisible. I, too, want to make myself invisible from time to time so I can eavesdrop.