Blood Clots

I have come to see ALS as a beast, a dark malevolent creature, psychopathic, murderous, cruel, waiting in the dark shadows of life, waiting for the opportunity to leap out and steal or destroy anything and everything that is good and happy in my life. It seems to have a power, a life of its own, outside of my body, outside of my spirit, maliciously stalking and attacking, a blackened sky constantly seeking the sunshine in my life and blotting it out.

Wednesday was a good day. On Wednesday the neurologist talked about stabilization, strength, and longevity. On Wednesday the psychologist talked about my enthusiasm for living and how well I was doing emotionally. On Wednesday the respirologist talked about good air capacity and clear lungs, and oh, by the way, I should have an ultrasound on my legs to make sure the swelling in my feet was not related to a blood clot.

So yesterday, Thursday, I went to the Diagnostics Imaging Clinic for an ultrasound. A pretty, young Ultrasound Technician asked me to take my pants off and get on a bed. I complied. She then shoved this device into my groin with such strength that I thought she wanted to sever my leg at the hip. In the process the ultrasound scan identified a blood clot in my left femoral vein, one that was serious enough to need immediate treatment. She said that the vein in my left leg was abnormally narrow, most likely not related to the ALS but simply a lifelong condition, non-threatening on its own but seriously problematic in my current situation. She sent me off to Emergency.

Apparently what one department in a hospital deems an emergency is not what another department deems an emergency. I and my companion waited for more than two hours, watching others come and go from the "Fast Track" line while we simply sat. It seems that a deep vein thrombosis (DVT), another term for this type of blood clot, is not a "Fast Track" event; it's a "you wait for until we get a real doctor for you" event. We sat and she, sadly and unfortunately, got to see me go through every emotion you can imagine as we waited and wondered about this frightening new complication; she got to see what the hard part of my life might look like and where it might lead; she got a look at tomorrow, the real possibility for pain and loss. It is not just a physical disease, it is an emotional and spiritual killer.

Eventually we got into see the "real" ER doctor. There was an extensive interview during which they warned me of pulmonary embolism, stroke, or heart attack, all possibilities should this clot break off and go awandering through my circulatory system. Urgent treatment was required. That treatment is a rather intense drug process involving Heparin to begin with and then Warfarin on a steady basis, with daily monitoring at a nearby hospital, the very one where I was first diagnosed with ALS.

Additional drugs are required to treat this clot, drugs and treatments that would not, in and of themselves, seem overly onerous. However the drugs to reduce the blood clots interact badly with the pain killers for my shoulder; so I now not only get to live a more limited life for the next few months, I get to do it in constant pain.

All of this arises from one simple cause. I spend too much time sitting. I spend too much time in my chair, thanks to ALS. It stole my legs and it is giving me blood clots as a reward. If it cannot find one way to kill me, it looks for another way. If it cannot destroy my soul and spirit by stealing my muscles, it looks for another way. If it cannot ruin my life and seize all joy and laughter by clouding my future, it looks for another way. I hate this disease.