A possible reason for my slow recovery since my blood clot attack in January

I received an interesting email from a pulmonary critical care physician (who is also a marathoner) who recently discovered this blog and has been reading about my recovery from my auto accident five years ago and from my blood clots in January. He hasn't seen my medical records or the x-ray of the vein filter that was put in my body five years ago and is still there. His only source of information is this blog. Thus, his remarks are speculation and concern the pattern of my recovery. Here are his remarks.

Ponder this hypothetical,

A person sustained multiple trauma in an automobile accident. Injuries included mild brain injury and other. At some point a deep vein thombosis is recognized and rather than immediately begin anticoagulation (i.e. because of recent trauma), an inferior vena cava (IVC) umbrella filter is placed to prevent pulmonary emboli. Later, possibly anticoagulation is given for six months or so and discontinued.

A few years later unknown to the patient, and forgotten by his medical providers the IVC filter slowly clots off. When the filter finally clots off and hence the IVC blood flow halts a sudden lower extremity venous pressure develops, with new leg clots developing. The patient also develops shortness of breath because of reduced venous return to the circulation. Quite significant bilateral lower extremity edema develops due to IVC flow interruption. In fact the edema and entire course are way out of proportion for simple lower extremity DVT but are the hallmark of IVC interruption.

Eventually, collateral veins develop to take on the lower torso blood return. But, the venous return is never what it was and exercise capacity remains reduced. Also, leg edema remains an issue and compression stalkings from time to time are required.

What is missing is imaging of the IVC to determine the presence or absence of occlusion of IVC and hence blood flow.

Story over,

The above hypothetical is not to be construed as medical advice, but is a story not dissimilar from what the blog would lead an imaginative person to consider.

Even though I'm not a medical person, his remarks make a lot of sense to me. The week before the blood clots, I ran about 20 miles, ending with a 7-miler on Saturday. I felt great during that week. On Monday I started my run, and after about 1/4 mile, I got a cramp in what I thought was my hams. I stopped three times to stretch it out, but the cramp came back as soon as I started running. I went home and took a two-hour nap. When I got up, I could only walk about 100 feet before I was so tired I had to sit down. If I climbed the stairs to my bedroom, I was sweating profusely and was out of breath. At first I thought the problem was that I had been pushing too hard in my running, but when the symptoms got worse, I checked myself into the hospital (my wife and son who lives a few miles away were in Florida).  A CAT scan of my body showed clots in both legs but none in my lungs, although the hospital doctor was suspicious that I might have had small clots in my lungs since I was out of breath when doing minor exertion.

During my 5 days in the hospital, I managed to get my walking up to 400 feet. What ever "hit" me certainly came on very quickly. Now, after 10 months, I can only run about 1/3 mile before I have to walk, and each leg of running gets shorter during the 4 miles that I'm currently doing. During the Spring and Summer I could only run about 1/10 mile before I had to walk. The 1/3 mile that I can run now is a big improvement. Mention in the email of brain damage was interesting to me, because I didn't have any injury to my head from the automobile accident. Brain damage must be a side effect of bad blood circulation in my legs.

I'll be discussing this with my doctor and will ask that the specialists in the Intermountain Health Care system review my case to determine if anything can be done to correct what may have been a mistake when they left the filter in my body. I had been in the ICU for three weeks with the filter, and the x-ray of the filter that was taken just before I left the ICU and went to another hospital for therapy showed that the filter was full of clots. On the x-ray, the filter showed up as a solid black rectangle. I was told at that time that they didn't want to remove the filter, because the walls of the vein had started to grow around the filter. I'm glad the filter was installed because it did catch a lot of clots, but in retrospect I wonder if it should have been removed even though it likely would have been "messy" surgery.