An
acquaintance of mine from college recently died. He had a blood clot and before
anyone knew anything was wrong, it was too late, and he was gone. I hadn’t kept
in touch with this friend over the years, but he was one friend away in
closeness, and I always knew him to be a genuine, kind person. He had recently
gotten engaged. He was in his early forties but his life was, in many ways, just
beginning.
His fate
hits close to home for me because when I was 22, I developed a blood clot and
before my doctor gave me the respect he should have given from the start, I’d
identified that something was wrong. My foot and calf had been casted due to a
broken metatarsal. I twisted my foot playing basketball a few weeks before
college graduation, and the bone just snapped. my foot puffed up like a purple
fish, and when I went to the emergency room for x-rays, the break was
confirmed. While in my turquoise cast, I continued my daily activities,
including my exercise routine in the small, sweaty gym on my university campus.
I spent 30 minutes pedaling the wheels on the stationary bike, and I busted out
bicep curls and leg extensions. Exercise was a part of my identity—I’d been a
competitive athlete for a decade. I couldn’t have stopped working out if I’d
wanted to. It was something my body needed, something it craved.
And so it
was with surprise and hesitation (I was so young, so healthy) that my doctor admitted I was right to have persisted. A Doppler of my leg showed I’d developed a blood clot that seemed to
have begun in my left ankle before traveling up my leg to my groin. This
explained the shocking swelling in my knee and thigh, as my flesh was spilling
out over the top of my cast like dough rising in an oven. This explained the
pain in my groin and difficulty lifting my leg to walk.
I’d called
my doctor’s office a half dozen times to explain my struggles and concern. Each
time, a nurse reminded me to elevate and ice. Ice what, exactly, she didn’t
know, since it was my foot that was broken, and the cast made access to the
break impossible, and it was my leg from the knee up that suffered excruciating pain. But I
was trying my best not to be hysterical or paranoid. And finally, something told me I
needed to get mean. Maybe it was sheer instinct or a dream about my own death that crept back into
my conscience telling me to demand attention. Maybe it was simply the fact that
I’d been an athlete long enough to know all the usual bodily aches and pains
and to know that this was something different.
I was one
of the lucky ones. I was diagnosed with DVT (deep vein thrombosis) and was
admitted to the hospital. I stayed there a week, on bed rest, with instructions
to move as little as possible, lest the clot break free and shoot to my lungs
or my heart or my brain. I had an IV in my arm and through it dripped heparin,
a liquid blood thinner. I was terrified. Since there was nothing that could be
done—no surgery to correct the problem or remove the clot, no procedure to
reverse the damage and guarantee vitality—I just had to wait. Every day, my mom
drove an hour after work to be with me, nurse me, comfort me. My boyfriend didn’t
visit once. My life and my health had seemingly taken a turn that showed me a
truth that had lain, until then, beyond my sight. My body was injured—was there
something else going on that could be explained by genetics? Having been adopted,
I knew little to nothing about my father’s health history. And there had been
no evidence that my mother’s health history included a clotting disorder. My
ego was bruised—was this what needed to happen to finally show me my boyfriend’s
shortcomings? I had long suspected and fought his lukewarm efforts, and now, it
seemed, my eyes were wide open.
But neither
of these things was enough to kill me.
And I was
fortunate to be able to continue with this new knowledge. I discovered I had a
genetic clotting disorder—one that surprisingly affects 25% of the population
of descendants of Northern Europe. This is not a small percentage. And given
what we know about the silent, deadly path of blood clots, why wouldn’t we
educate people about them? Why wouldn’t our doctors encourage us to be tested
for this mutation (and similar others) that can cause the blood to clot
abnormally? If we know we are prone to spontaneous hyper clotting, we can
prevent it with medication. And, especially in cases where the young are
susceptible to the flaws in their heredity, why wouldn’t we want to let science
and medicine help us live long, productive lives?
In my case, my doctor
believed I’d developed a clot from the immobility cause by my injury and
subsequent cast. A year
later, after stopping the blood thinner, I developed another clot in the same
leg. This, too, seemed to be triggered by bodily trauma. I had landed hard after
a jump in a volleyball game. The symptoms and pain were familiar, so I wasted
no time getting to the hospital. Again, I was admitted and given liquid blood
thinners to recanalize the clot. And my mother did some research, even hired a
private detective to find my biological father so she could understand how his
medical history might have influenced my current disorder. A doctor at UCLA
discovered that I have the Factor V Leiden mutation, and that I should continue
with a course of blood thinners for the rest of my life. We considered
alternate procedures, one of which included surgery to insert a stent in my
vena cava through the femoral vein in my thigh. The thought of this bloody mess
was hard to stomach, and there were possible complications and life-long
considerations about what it would mean to have a piece of metal in my chest.
Now, it’s
been twenty years since that first blood clot. Three years ago, I got another
one after a decision to go off the blood thinners, thinking that maybe, after
all these years, my body may have healed itself. I had a new doctor and new
hope. And after a three-hour dinner with a friend, my former symptoms started
up again—tautness, swelling, and pain in my leg and groin. So I went to the
hospital. And I was correct in my assumption. I have resigned myself to the truth. I am on blood thinners
for life, for real this time, until our medical geniuses discover another
treatment to keep me alive. The dangers of being on a blood thinner include internal
bleeding, as from an ulcer or some other issue and bleeding out in the event of
a car accident or some other extreme trauma. And there is no antidote to the
medication I’m on—nothing to reverse the thinning of my blood. I am at greater
risk of dying than all of my peers—except the ones who unknowingly have Factor V
Leiden, a disorder that can kill if not discovered and treated. While it is
true that most people with an inherited predisposition will never develop a
blood clot, about 10% will.
So, let’s
not let what happened to my college friend happen to other young, otherwise
healthy individuals. Let’s get the word out there that blood clots are
something to fear and. If you have Northern European blood, you might not wake
up tomorrow. This is not the first I’ve heard of an unnecessary death from an
unexpected clot. Awareness saves lives. Please spread the word and talk to your
hematologist. There’s a fine line between being paranoid and being proactive. One-hundred
percent of the time, I’d rather risk judgment and live than keep quiet and die.
It seems like a no-brainer, so now that you know what I know, what risk are you
willing to take?
