Waiting on Pins and Needles (Mostly Needles)

Almost a year ago Paul got blood clots in his arms (if you want to read about it I have moved the posts over. You can read them at http://dorktasticoddments.blogspot.com/2006_01_01_archive.html and http://dorktasticoddments.blogspot.com/2006_03_01_archive.html).

Here is a brief summary for those of you too lazy to go read: Paul’s arm randomly got hugely swollen and red (we called it the “Emergency Sausage Arm”). We went to the hospital. He had a large clot in his shoulder area and a bunch of smaller clots down his bicep. Since then he’s been on blood thinners and has had a gijillion blood test both to make sure that his blood thinners are at the right level and to determine what caused the clot.

One of the bajillion blood tests that Paul had when he first got the clot tested the Antiphospholipid Antigen levels in his blood. High Antiphospholipid Antigen levels can cause clots, but do not necessarily cause clots (so it could have been a random clot or it could have been because of the high levels.) The high levels in turn can be caused by a number of things including, but not limited to, the following:
1) An undetected cancer (this option has now more or less been eliminated through further testing)
2) Antiphospholipid Syndrome - APS (also called Phospholipid Antibody Syndrome or Hughes Syndrome)
3) A virus
4) Random fluctuation

In January, when Paul had his clots, his AP levels were 25 (positive result), at his next test they were 18 (indeterminate result) and at his last test they were 8 (negative result). For comparison, a normal person has no antiphospholipid antigens in their blood at all. The gradual decrease likely means that the original result was not a random fluctuation, however it is good that the levels are dropping because it means that it is less likely he has APS. The hematologist was not confident enough that Paul was fine to take him off the blood thinners without further testing though. If his next test comes back negative or with no score at all, she will be relatively sure that the clot was caused by increased Antiphospholipid Antigen levels in his blood which were caused by a virus. That would mean that once the levels were low enough he could go off the blood thinners and he would likely never have a clot again. If the levels increase then there will be further testing and likely longer relationship with the blood thinners along with all of the consequences that brings.

Today Paul took his last blood test. It will take roughly five more weeks to get the results at which point he will have been on blood thinners for a full year; a year of increased risk of hemorrhaging and easy bruising, without carrying heavy things or playing hockey, but also without blood clots, stroke, blindness or heart attack. It seems a fair trade to me.

One of my greatest fears when we got married was that I would be widowed within the first year of marriage. (I know, I am a crazy person). We’ve successfully passed that threshold but we're not out of the woods yet. Until we get the results of his last tests, we will be waiting on pins and needles (mostly needles, he has to have blood tests on average twice a month) to find out if he is safe. Until then I will just hold him a little closer, hug him a little tighter and cherish the time we have together.