On the Rollercoaster

I have a condition known as antiphospholipid syndrome—how’s that for a mouthful. It’s associated with Lupus and is when your body causes your blood to clot leading to life-threatening blood clots that can occur anywhere in the body. Since developing the condition, I’ve gone on to have about 15 transient ischemic attacks, 3 strokes, 2 kidney infarctions, 1 pulmonary embolism, a mild heart attack, and a dissected artery. Needless to say, I’ve been in the hospital due to this disorder a lot. There is no cure and treatment is to keep the blood thin with regular Coumadin (AKA warfarin).

When you are on Coumadin, you have to have bloodwork that measures something known as the INR (international normalized ratio). This informs the doctor whether Coumadin is keeping your blood sufficiently thin to prevent infarctions. Because my APS along with all my autoimmune diseases is severe and responds poorly to Coumadin, I have to have bloodwork every week, two times a week. I have a machine that allows me to check at home and then I go to the Steeplechase Cancer Center to see my hematologist for my weekly check-up. My doctors have to keep my INR between 2.5 and 3.5, preferably around 3, as I’ve infarcted at 2.1, which is rare.

And every week I measure my INR, we dip or rise on a rollercoaster. This past Friday, I was 3.7, which was too high and required me to hold my medication for 2 days and drop down to 6 mg of Coumadin from my usual 7 mg. When I tested yesterday, I was dangerously low at 1.4 requiring me to take a Lovenox shot as emergency treatment today and tomorrow. And the shot is painful! Man does it hurt.

My numbers are so erratic, the nurses at the cancer center all look at me with trepidation when I come in with my paper with my latest result from the lab next to the treatment room. They greet me with a suspicious look of “What number are you today? Are we good?” Most of the time it’s not. Although when it’s high I usually shrug it off because it’s better high then low. Low means possible death, high just means “don’t cut yourself with a razor shaving”.

Today it’s a day where my emergency go bag is ready, my medication and doctor lists are ready, as is my Do Not Resuscitate form. Ugh. So taking a wild ride on the rollercoaster.