In August 2004, I was diagnosed with one copy of the FVL mutated gene. I am 24 now, and was 23 when I found out about it. I'm fairly healthy, don't
smoke, don't drink, and am of average height and weight. I did have my gallbladder removed when I was 21.
I remember the exact moment my calf started aching - I was cooking dinner and thought maybe I pulled a muscle, and the pain immediately subsided as soon
as I put my leg up. This went on for about a week before I went to see the Dr., who sent me across the street to the Emergency Room to do an ultrasound
on my calf. Maybe it was just that hospital, but the technicians doing the ultrasound would not tell me either way what they were looking at.
Anyway, it turned out that I did have a clot in my upper left calf. I had to admit myself to the ER where they gave me a Lovenox shot and a prescription
for more LMWH shots and for coumadin. They asked me if I could self-inject and I just about passed out. Thankfully, my fiancée was willing to do
it. They told me to stay off my leg as much as possible. Then we went to do a battery of blood tests before I started the Coumadin to determine why I got
the clot in the first place. I was on birth control pills, of which blood clots are sometimes a side effect, but maybe it was hereditary? My father, whom
I don't speak to, had a clot in his leg and one in his lung, which was the first clue that it might be a genetic thing.
The next day, I had taken off of work anyways to take a test at a local college. This was minimal as far as moving around, walking, etc.
When I woke up the next morning, I felt a slight achy sensation upon breathing in. I felt it mostly in my back. When I got to work, it got worse and I
talked to my Doctor who told me to go to the ER. I actually stopped several times before I got into the car, thinking that it was just in my head and I
was probably fine. However, my practical side prevailed and decided it's better safe than sorry. When I got to the hospital, they did a CT scan of my lungs
(which, though necessary, was a horrible experience). I had a Pulmonary Embolism in my right lung. So, a piece of the clot broke off and went through my
heart and into my lung. At this point, I was pretty scared. I called my fiancée who works right down the street from the hospital and he said he
was fine, and that everything'd be fine, and I totally believed him. Didn't stop me from crying when I told my mom what was going on though.
So, the hospital admitted me and put me on Heparin. In the middle of that first night though, they took me off of it because my blood was too anti-coagulated.
They kept me in the hospital for about 5 days after that until my INR was in the therapeutic range (2.0-3.0). I have to say though, that hospitals really
don't have it down when it comes to giving out coumadin dosages. They pumped me full of coumadin. Every day, when my INR would come back lower than 2.0,
they'd up the dosage at least 3-5mg. When I left the hospital, my INR got as high as 5 (which at the time, really scared me), because of the delayed onset
of coumadin.
When I got out of the hospital, my regular doctor told me that they had tested me for all the genetic problems, and the only one that came up positive
was one copy of the mutated FVL gene. I'm sure my dad has it, but he hasn't gotten tested.
I'm doing fine now, I'm getting married in less than 2 weeks in Hawaii, and am not on Coumadin any longer (since the clot, they think, was due in tandem
with birth control pills, as well as the FVL, they say that not being on the pill will really help to not have any more occurrences of clotting). I'm really
glad I found out though, because when we decide to have kids, it would really help us to know this, and know what we can do to prevent clots during pregnancy.
My story's not that dramatic, but there's enough drama in other places. Knowing how deadly a DVT/PE can be, I do consider myself very lucky. I'm really
glad there's a website that can give people more information on this type of medical condition.