Thursday, January 17, 2013

Blood Clot

I have not written in this blog for a long time. Mostly because I was in communication with everyone and very little was happening in my life. Recently I have had many questions about my current health status so I decided to start up the blog again to let people know a little about what is going on with me. There may be more information than you wish to know. Feel free to skip through as you wish.

On the 17th of Dec I started feeling a pain in my left buttock. It only happened when I stood in one place. I figured it was a muscle pull and went on with my life. I had a slight limp but nobody really noticed. A little less than a week later I went to Belize to visit a friend for Christmas. While there I went hiking up a river through a series of sacred caves filled with artefacts and human sacrifices. I had no problem with all the climbing but could not stand, so I squatted every time the guide talked. The next day I found it hard to climb steep trails and at an ambassador’s reception I could stand to talk and be social but it hurt. The next few days I walked as little as possible because every step was painful. The embassy nurse had no idea what to do with me except give something a little stronger than advil. I scheduled a doctor’s meeting for the Wed after I got back but was in so much pain I went into the GW emergency room on Dec 30th.

The doctors quickly figured out that it was a blood clot. They also found out that my blood is (or appears?) incredibly thin but clots much more than most people’s. I can usually wrap my head around counterintuitive ideas but this one is still beyond me. The thinner my blood is the more it clots? Or my blood clots so much that my body doesn’t bother making clotting material and so it appears thin? They called it some form of autoimmune disorder similar to lupus. They only have guessed this based on how my blood relates to other people’s blood (not well?). I also have a fairly common anatomical disorder called May-Thurner Syndrome in that my left iliac artery is right next to my left iliac vein. This crossing point is a little below my belly button and to the left. These are the main blood vessels for the left leg and whenever there is a contest for space the artery always wins. Thus, sometimes the vein to my left leg gets very compressed. Throw in my tendency to clot and it is an accident waiting to happen. There was a debate with my primary team (all internal medicine) arguing to give me a blood thinner and send me home while the option of the interventional radiology team was to take out the whole clot, give me blood thinner, and send me home. Apparently, every day the clot stays in place it damages the vein as well as not being healthy for all the tissue not getting enough blood. It is also incredibly painful to have a blood clot.

The IR team won the debate and they took out the clot in a two-step procedure. The 1st is to have a catheter which slowly releases a powerful anticoagulant into the clot for about 24 hours. The idea is this will “melt” the clot ant turn it into blood. The next day they look at it and vacuum up any bits left and use balloons to open up where the vein collapsed. This happened on Jan 2nd and 3rd. The afternoon after the 2nd surgery (I forget surgeries don’t happen anymore, they are all procedures) I could walk slowly around the room, weakly but with full weight on the leg. The next morning I found it hard to take a few steps and they hurt much more. Whenever I asked the IR doctor about the pain and reduced mobility he said “You need to exercise more.” A couple friends took me home Sat the 5th. I used crutches but it was tough moving around. The pain just got worse and worse so that on Monday I called a taxi and went back to the hospital.

They tested me and my clot was completely reformed in the exact same spot. The doctor who had done the surgery was pretty unrepentant. He said that they had made a judgement call the 1st time in not giving me any stints. Stints open up the blood vessels and keep them open but apparently have long term side-effects and cause clots on their own. They had tried without stints which didn’t work so procedure #2 they added 2 stints in the May-Thurner spot where my artery and vein compete for space. They decided the 1st blood thinner didn’t work so they proscribed a different one. After the 2nd procedure I didn’t feel any better. The pain from walking was just as excruciating so I did exercises in bed but that is not enough. A couple days later they looked and the clot had returned a third time. Exact same size and exact same place. They did all the same procedures on me Jan 15th and 16th although they started much deeper in my leg. Instead of in the back of my knee they started in my ankle. They also added stints in the veins coming from both sides of my legs and leading up into my vena cava, the big vein of the body. They needed more holes near my stomach for this so it is harder to move. I think they also changed the blood thinner again just as a matter of course. I have been doing exercises on my own in the bed and managed to walk twice during the night. It was painful but doable. Once the rounds are done someone will come and I will give walking another shot. I will update this blog in the next few days.

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