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I first began having some leg symptoms
mostly pain in my calf.
It felt just like a muscle cramp
and I really thought I had just pulled a muscle.
And then I began having chest symptoms
I began having shortness of breath
difficulty breathing, pain in my chest
I had a DVT and a pulmonary embolism when I was 34 years old
Through those tests, they discovered
I had a genetic predisposition to clotting
After my husband and I got married I became pregnant
and I delivered our son with a cesarean section
I then was released from the hospital and I was home from about a week
and I woke up one morning and could not walk
Literally, my left leg was swollen; it was like a tree trunk
excruciating pain, a burning sensation, redness
and a numbness in the foot
And then I remember my physician telling me
you have deep vein thrombosis a clot in the femoral vein
and it was a very large clot. And, the total vein was blocked.
and that's why the leg was swelling
I discovered that I had inflammatory breast cancer
on June 30, 2009
Part of the hospital literature
that was given to me when I was diagnosed
mentioned that sometimes people who have cancer
and/or are on chemotherapy can develop clotting disorders
for instance, deep vein thrombosis or DVT in the leg
And they described what it felt like
well just coincidentally
the last several days I had been feeling
like I had a low grade Charlie horse in my leg
it just ached and cramped and it just wouldn't quite let go
And indeed I did have a blood clot
and we immediately began to manage it with an anti-coagulant
I was 44 years old
looking forward to turning 45 because I did triathlons
I did a lot of them and I was anxious to get into the next age group to be competitive
And during a training run in October of 2003 I hurt my foot
It hurt for about a week and I finally went to an orthopedic
and I had a broken bone in my foot. They put me in a cast.
About mid-December I was feeling some pain in my calf
as a matter of fact, it hurt when I got out of bed. Didn't know why,
so I went to go back to the orthopedic
and they took the cast off and put a tighter one on
That week, we moved the Christmas tree from the garage into the house
and my wife noticed that I was short of breath
and she was saying, "Are you really that out of shape?" I didn't think I was
Then I went to Dallas, to a meeting and I couldn't control the swelling in my leg
so I flew home, went to the orthopedic, reluctantly
the next day, and low and behold we found out that I had a DVT and bilateral PE
JJ was our son, he was 14 at the time
we went to a game with him to watch the varsity play,
and as we exited the gym he said to us
"Gee, I have this really bad headache mom and dad."
And so the next day he said "You know, I still don't feel well."
We thought, maybe he had the flu but then that night, I think he started seizing
Yeah, he had a generalized seizure
so we rushed him to the hospital
So, he went up to the neurology intensive care unit and he never left
He kind of woke up once
and then he just kept having clots and thromboses
The last thing he said to me when he woke up
he said, "How much do you love me mommy?"
And, I said, "more than life JJ." And that was the last thing he ever said
The surgeon general, in 2008
issued a call to action to prevent deep vein thrombosis
and pulmonary embolism in patients, particularly hospitalized patients
to use the appropriate measures to try to do that
And the role of the CDC is to help make people aware of this as a public health issue
and also to have a better understanding of how common it is in our society
People at risk for DVT or PE include absolutely everyone
It's hard to say that anything or one factor
causes deep vein thrombosis and pulmonary embolism
but there are many things that increase the risk
and a number of things can work together
to greatly increase the risk.
There are three things that are really important for patients to know to prevent DVT
Number one is to know the risk factors of DVT PE
to know that recent hospital stay immobility, surgery, birth control pills – are risk factors
Knowing, "do I have a family history of blood clots?"
Number two, is to know the symptoms of DVT PE
so if they do occur, the person is aware
this could be a DVT and PE and be checked out for it
Then thirdly, since the majority of DVT PEs happen in the hospital
I think it's important that patients be proactive
and ask their physician “Should I get DVT prophylaxis? Am I at risk for DVT or PE?”
I'm currently on anticoagulation medication
and will need to take that for the rest of my life
But, I have been very lucky I have not had any additional symptoms
no more blood clots, no pain related to the blood clots
Once that episode resolved I have had no problems at all
I live with this problem every day of my life
and it has now been over 30 years
It impacts every decision you make, daily
I was lucky because I found it when it was still pretty small ∓
was able to get appropriate medical attention right away for it
So, the biggest effect that it had on my life
was the fact that I had to take the anticoagulants
I think a lot of blood clots could be prevented
if people knew their risk factors
and received appropriate DVT prophylaxis
So, I think there needs to be a body that increases the awareness about DVT and PE
and the symptoms in the general public and I think the CDC plays a major role
partnering with different organizations such as patient advocacy groups with health professions
All providers need to know that DVT is a possibility
all providers need to know what the signs and symptoms are
all providers need to know how to diagnose DVT
all providers need to know how to treat DVT
and all providers need to know how to refer for diagnosis and treatment if
they don't have the capacity within their practice or facility
I think the most important thing people can know
is that everyone is at risk for developing a blood clot
and especially if you've already had a blood clot
you are at greater risk for having a future clotting episode
So, it's important to know the symptoms of blood clots
it's important that if you start having some of those symptoms
to seek help right away and not delay in getting care because delay can be deadly
Be your own advocate I don't think that it's wrong to challenge
or question physicians today or care givers today
because the more informed we are… you are
then the better chance you are to take yourself out of a position
where you could potentially get a DVT PE
Why is research so crucial? Unless we understand what causes something
or what triggers it or what's doing this
somebody else could experience the same loss that we have
and there is no way to deal with that loss
I recommend that patients participate in research studies
if they are available and the patient feels comfortable with the study
mainly because there are still many areas of medicine
where we don't have all the answers We really don't have the correct answer
for how long to treat a patient after they have a blood clot
We have information telling us what the minimum is
and maybe go longer but we don't know how long to go
we don't have good information on which patients
can be safely stopped after having a blood clot out of the blue
we also don't have information on the best medicines
as many of our patients know there are new medicines that are being developed
as we speak as new blood thinners
so making sure that those medicines are safe
Also, there is still a substantial number of patients
where we don't know why they have the blood clot
so participating in types of studies that may help us better understand
what caused the blood clot in the first place
may lead us to better developing strategies
to try to prevent that blood clot in subsequent patients
I would alert people to stay on top of your own health care
know your body, know yourself
get help, ask questions be your own advocate for your own health care.
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