My name is Angela, and I just 'stumbled' across this website this afternoon.
I am a 27 year old woman who, about 2 years ago, tested positive for factor
V gene mutation. For almost 2 years, I have felt alone in my paralyzing
fear, and constant worries that I could almost die... again.
Let me bring you back to December 2004.
I was living happily in AZ with my husband of just 3 months. We are originally
from MN, and being that it was the holiday season, were planning a trip
back home. We made the decision to drive home so we could transport our
new puppy and Christmas presents. We made plans to leave for MN on a Monday
(12/20). My husband had a grandfather who was dying of cancer, and on the
Sunday before we were to leave, we got 'the call' to alert us that grandpa
had taken a bad turn, and if we wanted to say goodbye, we needed to drive
straight from AZ to MN. Less than 12 hours later, we were on the road.
Now,
let me go back a few days before this. I had felt short of breath, and had
some MAJOR shoulder pain on Thurs, Fri, and Sat. I am a hair stylist, so
I figured that my shoulders were sore from holding my arms up all day long;
that, along with the stress of driving across the country, and knowing we
were going to have a death in the family. I did something that almost cost
me my life. I ignored my pain, I ignored my body's loud cry for help.
About 8 hours into the drive, we got out at a rest stop in New Mexico to
stretch our legs. As I was up walking around, I felt the strangest sensation
in my right groin. It felt as if a worm was crawling under my skin, and
the only way to get rid of the sensation was to massage and stretch the
area. Again, I just chalked it up to sitting for 8 hours in a car, and ignored
my body's plea. The thought of a blood clot had NEVER even entered my head.
As the day and drive wore on, my back pain moved from my shoulders to my
lower back, kind of where your kidneys sit. Every move I made hurt. It got
to the point that I couldn't even laugh at the jokes my husband was telling;
to do so brought tears to my eyes. I couldn't take deep breaths anymore,
it was as if a knife was stabbing my in my sternum if I tried to breath
real deep. I have to admit, by this time I was worried, but knowing that
grandpa Bob wouldn't survive the night, decided to keep driving so my husband
could say goodbye.
Eighteen hours into the drive, on the most rural road I have ever been on
in Kansas, our cell phone rang. Much to the surprise of both my husband
and myself considering we hadn't had service for about 100 miles. It was
my sister in law calling to let us know that grandpa had just died. We didn't
make it in time. Knowing we were trying to drive straight thru, our family
told us to find a hotel for the night, get some rest, and continue our drive
in the morning. When we hung up the phone, my husband looked defeated, he
wanted to see his grandpa so badly. Since we were no longer 'racing' home,
I told Derek that I needed to get to the hospital ASAP. I could hardly breath.
We stopped at the Via Christi hospital in Wichita, KS.
I was in the waiting room for over an hour, and with every minute that passed,
I became shorter and shorter of breath. Finally, I was called back, and
within a few minutes, given a CT. After the CT, I was put in a room and
a woman came in and said, "honey, you're going to have to stay here...
you have multiple, bilateral, pulmonary embolisms." WHAT? She was speaking
a different language, I didn't understand her. "Is that serious?"
"Yes, very." Tears filled my eyes, and like a little child, I
asked, "am I going to die?" The woman said, "this is something
that could kill you, yes. Right now, we're going to move you to ICU and
start you on an IV to hopefully dissolve the clots."
The world fell
out from under me. My ears began to ring, and I was unaware of my husband
gripping my hand in support. All I heard was that I could die.
I spent three nights in the ICU, and all kinds of nurses and doctors were
in my room. I felt like I was on an episode of "ER" or "Greys
Annatomy". A group of inerns would come in with a doctor, and someone
would read: "24 year old female presents with mulitple, bilateral PE"
and everyone's eyebrows would raise. On more than one occasion, I was told
that had we not stopped when we did, I would have been dead before we got
off the Kansas City turnpike. More than one doctor told me that "not
many people survive what you've just survived... it's a good thing you got
here when you did"
Turns out, I have this clotting disorder... and at the time I developed
my clots, was on Ortho Evra, the birth control patch. The doctors believe
that it was the birth control that caused the 'deadly coctail'.
Re-telling the story gives me chills, and I swear, I feel like it just happened.
After the life altering event, my husband and I moved back to MN to be near
family. Since then, I've given birth to two beautiful boys. Thru the duration
of both my pregnancies, I was on theraputic doses of Lovenox, and followed
up with warfarin for 12 weeks postpardum. We will have to have the boys
tested for factor V when they are a little older; I pray they didn't inherit
this.
Every day, I think about all the events of that day, and I am so thakful
to have survived. I wish that I had known prior to being put on the birth
control that I had factor V; as it almost cost me my life. I would like
to see a blood test to check for factor V run on all women about to start
birth control...even if it saved one life, it would be worth it.
I am happy to have found this website, it is comforting to know I am not
alone in my factor V diagnosis. Thank you for reading my story.
Sincerely,
Angela
-Minnesota