Life with Blood Clots

Unfortunately, experiments with pacing and issues with fatigue are causing me to slow down on posts lately. My neurologist wants to start me on a new medicine that may help the fatigue. But, my health insurance hasn’t approved it yet. It’s been two weeks.

Having long-covid is quickly teaching me all the things wrong with how we treat people who have long-term illnesses and disabilities.

Anyway, I have finally made it back around to my next blog post and I am continuing my tour of symptoms today with a post about my blood clots.

Doctors haven’t been able to give me answers about most of the things that are wrong with me. The one thing that they’ve been the clearest and most definitive about is that I have a blood clot in my leg. Even that took 2 visits to the ER to discover. Click here for the post about that.

At this point, that blood clot has become chronic and calcified. Which, as far as I can tell, means that this blood clot and I are going to be together for the long haul.

The truth is that I actually have a long history concerning issues with blood and blood clots, which made blood clots the most familiar of the issues that I have dealt with.

I decided to discuss in detail in a longer post later on the whole complicated history of myself and my blood issues because as I reflected on the whole story, I realized that it was another important life lesson for me about healthcare and taking care of yourself.

But, to summarize, when I was in law school I discovered that I was a carrier for a genetic blood disorder called Factor V Leiden.

I consulted a hematologist who told me that I was only a carrier, may never have any problems, and she even okayed me to be on a medication that also had a danger of causing blood clots.

I was on that medication for about 3 years. And then, 3 years ago, I developed a blood clot in my leg (a Deep vein thrombosis or “DVT”) and was prescribed blood thinners to dissolve the clot.

After a few months, my prescription ran out and my clot was dissolved but had left scarring and I was still experiencing leg pain.

After a full year of consulting with different vascular surgeons and hematologists, I was told that I could stay off of blood thinners and would probably be fine.

Then, I caught covid.

It was right around the time I got sick that news was starting to spread that covid seemed to be causing clots.

I caught covid in June. It was July that I noticed a familiar leg pain that eventually was confirmed as a clot.

I’ve been asked multiple times to confirm that the blood clot was because of covid. Each time I say without a doubt, yes, covid is the reason why I have this new clot.

The blood disorder and the previous clot made me more susceptible. But, covid is the reason why I have this clot. I was on no blood thinners and had no problems for three years until covid.

Moreover, I firmly believe that have had more than one clot and that the other clots were just too small to be picked up by the tests. The reason I believe this is because the doctors didn’t even catch the clot in my left leg until it got bigger and I have experienced the same pain that I have had in my left leg in the right leg.

I also know that some of the emerging research from autopsies of those who have died from complications from covid that issues with the brain especially seem to be connected to very small blood clots.

I don’t think it’s a coincidence. But I also don’t know how to prove my theory or what good it would do. I’m already on blood thinners for life now. I don’t think doctors have any other medicine that they could prescribe me.

The good news is that of all of the very random things that I am going through and of all the various aches and pains that don’t have answers or explanations, at least I know a little bit about clots. At least this one’s familiar.

#bloodclot #disability #medical