Tuesday, December 13, 2011

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!

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