Health, Life with...

Life with Factor Five Leiden (FVL)

Just to clear things up before I get into this post, Factor Five Leiden, a.k.a. FVL, is the pesky little inherited clotting disorder that brought me such classics as the stroke, a pulmonary embolism (blood clot in the lung), and two pregnancies plus six weeks of injectable blood thinners.

When I first had the stroke in 1995, they wrote it off as just being extra blood vessels in the brain that my body and their make-up just decided to close up shop. That’s what I believed until I found out otherwise, about ten years after the stroke. It was a way to make sense out of something that seemed senseless.

Truth be told, I kept many of my bad habits (smoking on birth control, first and foremost) for much of the time between my two health crises. Then, in the summer of 2004, I cracked a rib while moving. About a week later, I woke up in the morning, feeling as if I had simply smoked way too many cigarettes, but it was only on one side. I thought it was weird, but still went about my day.

I had some friends help me finish moving in the last of my stuff and then went to bed early, as I never could quite shake that weird feeling in my left lung. I woke up and it was worse. It was getting harder and harder to breathe, and it was starting to hurt. I got dressed and headed to my counseling appointment. I left early to try and get my mind off of it.

By the time I got to my appointment, it flat out hurt. No position I could get into seemed to ease it, either. My counselor more or less made me call the doctor before our session started. When I had scheduled the first appointment that afternoon, we started to go through our weekly ritual, but that was short lived, with her asking me if I would drive to the hospital then and there, or would she need to take me. With that, I drove the few blocks to the hospital.

My first shock was that they gave me a room right away out of triage. I had a new chest x-ray done to check on the rib I’d cracked the week before. When the nurse came in to offer me pain meds and to tell me I was going to need an MRI to rule out a pulmonary embolism, my blood ran cold. I had been a big ER fan when it was on. Pulmonary embolisms killed people.

The rest in and around the ER was a blur. It was a pulmonary embolism. The doctor ordered a battery of tests because it wasn’t normal for an almost 30 year old to have both a pulmonary embolism and a stroke. The phlebotomist came in when I was up in ICU and took fourteen vials of blood for all the tests. I was told the results would be back in about two weeks.

Two weeks came and two weeks went. No news and I began to resign myself to the fact that I was just really unlucky. Then, my regular doctor’s nurse called and said that the results were in, I had FVL, and the doctor was reading up on it, could I come in  in about an hour?

That was freaky, and I was even more freaked out when I was referred to see an oncologist to learn more about it. All I left the office knowing was that at least I’d only inherited one copy of the gene.

I went to the oncology appointment where I was informed that I’d need to be on Coumadin for the rest of my life, something I admit I’ve been far from perfect at over the past years. The only time that I have taken my thinners religiously was when I was pregnant and post-partum with Ryli and Landry. That was about 40 weeks of giving myself one or two doses in the form of a belly shot.

My body just doesn’t break up clots like it should. When enough events line up just right, BAM! I get a clot which doesn’t break up and gets stuck. I’ve passed the gene onto three of my five kids, with two not having the test at all. A few years back, I found out my third cousin has it, too. Hopefully, the kids are never more than a carrier, but only time will tell.

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