It takes an awful lot of courage and strength to live with this disease; it doesn't take much to die from it, it is living with ALS that takes so much. I remind myself of this on a regular basis although I really don't see myself as all that courageous or strong. All I do is get up each day and face the morning, go through the challenges of the day, and go to sleep each night. It sound rather like everyone else in this life, doing the things that must be done to keep body and soul together.
One of the slogans for my life is "Weebles wobble, but they don't fall down." The last few days have been a bit wobbly. They have tested my capacity to deal with difficulty. This blood clot in my leg means changes for me; not good changes or bad changes, just changes. In fact my life is filled with constant change, rather like everyone else in this life.
My daily regimen will be complicated for a while. First, I will be getting my blood tested every other morning for the next few weeks or months. That means being near the blood test lab; fortunately there is one across the street from my apartment so I don''t have to go into the hospital as was first thought. Then, for the next week at least, I have to have a shot of heparin each day within an hour of 3:00 PM. I detest needles and the idea of injecting myself so I have decided to take the easy way out and have a Home Care Worker come in each day to do the injection for me.
These injections are an anti-coagulant; they improve the ability of my body to break down clots in my blood vessels. The drug works very well, especially where it is injected into my belly. Already I have to ugly purple bruises on my belly, one on either side of my belly button, rather like medals of war demonstrating my courage under fire, except perhaps a bit low down from my chest. The current plan is for eight heparin shots to raise my INR, the International Normalized Ratio, a laboratory test measure of blood coagulation based on how long a clot takes to form in my blood. Normal is "1"; my target is somewhere between "2" and "3".
The Heparin will be replaced by Warfarin over the next week or so. Warfarin is an effective and well known rat poison, working in large doses to cause the poor targets to bleed to death. It stops coagulation. In the small doses given to blood clot patients, it helps the body by raising the INR and improving the body's ability to break down clots. It also promotes bruising and bleeding. Given this, I have to watch for any unusual bleeding or bruising, lightheadedness, or blood in my stool or urine. Oh joy, oh joy.
The long and short of all this taking and testing and testing and taking is that I have decided to cancel my road trip to Key West in February. Until and unless we can get this clotting problem under control, I need to be close to medical care, just in case. It's a good thing I did my road trip this summer, when I could.
What a damn shame Rick that you have to be near the hospital or clinic every second day. Life stinks sometimes. I had those heparin shots in my belly every day for a while when I was in hospital. Being in the hospital was my life at that time so it was not a hardship . I couldn't go anywhere anyway. I hope this does not last too long. Love you Mom
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