Living with Blood Clots and Clotting Disorders
Blood clots and genetic predispositions to clotting disorders can have serious lifelong consequences for patients… and for their families and friends.
Collected here are the stories of those living with Thrombophilia. Click on the links below to read personal stories about coping with these conditions.
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Tim
Allen is using his experience with DVT and PE to do a
cycling tour in the summer of 2010 to raise funds for NBCA.
My name is Tim Allen and I am 59 years old. I “busted” my foot
playing soccer in college and needed surgery to repair it about
35 years ago when I was in the Air Force. However, it got
worse recently, and I dislocated my toes whenever I ran.
Unfortunately, I developed DVTs in my calf on the same side as
the repeat surgery to mend my foot again.
Read Tim's Story.
Cedric Bills
relates an inspiring story of a person in the peak of physical condition suddenly being stricken with a life threatening health issue.
"As U.S. Army Master Fitness Trainer, I was use to physically
challenging my body. So it was not unusual, when in August of 2002 I
shrugged off a sharp pain in the calf of my leg – a pain that had jolted
me from a restful morning sleep..."
Click for Cedric’s account, in his own words, of his battle to regain normalcy.
David
Bock was seriously injured when he slipped
and fell in Upland, California on March 8, 2008, while visiting
there from his home in Arizona. He was rushed to the emergency
room (ER) of the nearest hospital where the ER doctor diagnosed
fractures of his left tibia and fibula in his lower left leg.
(left ankle bimalleolar fracture). He was in a great deal of
pain, and was told that the fractures needed open reduction
internal fixation surgical repair...
Click here to read David's
story.
Lisa Boyd experienced a near fatal blood clot after delivering her second child. Like many people who experience blood clots, her medical providers did not recognize the symptoms until it was almost too late.
Click here to read Lisa Boyd's story.
Deirdre Callahan
is an avid triathlete who lives
in Mentor, OH. She became involved with "NBCA Clotbuster" activities and
is helping to fundraise for the organization. " On Mother's Day
1997, I developed a DVT (blood clot) in my femoral vein. I had been a
mother for almost 2 weeks. When I called the hospital, they told me to
make an appt. with my doctor in the morning -- they didn't think blood
clot since my calf didn't hurt. Fortunately, the clot didn't break off
and I ended up in the hospital for 8 days. It took another 10 months for
the doctors to finally diagnose that I have a blood clotting condition
called Factor V Leiden -- the gene mutation was only discovered a year
or two earlier." Here she shares why NBCA
means so much to her.
Read Deirdre's story.
Jessica Earley -
"Today was a cool, brisk November day, and I decided to go visit Jessies’
Garden. I climbed from my car and walked the short distance to the spot
where our journey ended two and a half years ago. We brought her here to her
final resting-place while the bagpipes she loved played Amazing Grace. I
look at her picture on her marker - the shining dark hair - the dark eyes
that could look at you as if she were looking clear to your soul." Terry Peterson remembers Jessica Earley.
Read Jessica Earley's Story.
Jim Fenton shares his story of a rare thrombophilia condition and how he
survived a deadly blood clot. "My sport and how I got started are directly
linked. I lost my father and grandfather to blood related cancers when
I was a young boy. In 2005 I became aware of the Leukemia and Lymphoma
Societies Team in Training and got involved. I became an endurance
athlete and began raising money to fight blood related cancers. After
not being able to run even 3 miles in May of 2005 I ran the Chicago
Marathon ..." Read
Jim's story.
Katie was a junior in high school in 2007. Her
periods were irregular and her doctor suggested that she begin taking
birth control pill to regulate them. We told her physician that her
father had been diagnosed with factor V Leiden after a tiny stroke at
age 39. We were told that this constituted a “very small risk” for
Katie. Read Katie's story.
Hope
Galley had just completed the greatest of her 12 marathons, the NYC
Marathon! What an experience! She had never had so much fun at a race and
she
was determined to return in 2007! In addition to this huge achievement, She
had just been promoted at work. She was now one of the few women within her
company who was poised to make a run for the top. ...!
Read Hope's story.
Sara
Golieb’s Blood Clot Story - Sara Golieb wants to alert people to the
reality that blood clots can occur in younger people, and that use of birth
control pills increases risk. I took what I thought was a
routine flight to visit my family in Florida in October 2009. My leg had
been bothering me a little before the flight, due to chronic Achilles
tendonitis. When I got off the plane in Florida, my leg seemed stiffer than
usual. The flight was uneventful, and since it was late when I got back to
the house, I went right to bed... Read
Sara's story.
Jennifer Gray is a professional meteorologist with NBC 6 in Miami. Jennifer was fortunate to survive pulmonary emboli in two lungs. Her life was saved by insisting that something was wrong and the advice she was being given by medical professionals could not be correct. Her persistence in demanding medical care paid off. "If
someone would have told me a year ago that my birth control pills were
killing me, I would have laughed..
Read Jennifer's story.
Kim
Gronholz's Blood clot survival story. This is the
story of a teacher who wants to alert people to the risks and
signs and symptoms of blood clots, after her experience with a
DVT and PE related to a new found thrombophilia, use of birth
control pills, and recent prolonged travel, a mix of 3 risk
factors for blood clots. Read
Kim's story.
David Henry discusses owning his coagulation therapy and taking control of his life through self testing.
"Like
many of you who are reading this, I am a Warfarin “lifer.” Also, like
many of you, I have experienced the frequent delays and inconvenience of
waiting at busy lab sites for the brief procedure resulting in my PT-INR
ratios. As a busy professional, I felt a growing need to challenge...
Read David's story.
Kimberly Hennings of Colorado shares her and her sister’s story of pulmonary embolism. Kim developed multiple PE’s post-surgery in November 2007. Her diagnosis of PE was missed until it was too late.
"In July, 2007, I was living as most mothers of young children do. I
followed the daily routine of long work days to financially provide for
my family, lost in the rush of seemingly endless soccer practices, band
recitals, doctor’s appointments and evening college courses. "
Read Kimberly's story.
Kelly
Hogan Tells her story about surviving a pulmonary embolism caused by a
DVT in her leg. "A year ago today, I had no idea the curve balls 2009
would throw at me, and I would have never guessed they would involve a
life-changing experience involving my health. You see, I’m the “healthiest
person” all of my family, friends and colleagues know. I’m studying
for my Master’s in nutrition, eat more than five servings of fruits and
vegetables each day, shun anything processed or laced with saturated fats,
rarely order takeout and run miles and miles almost every day."
Read Kelly's story.
Nicole De Jong
experienced a cerebral venous thrombosis in 2007.
"On March 24, 2007 I gave birth to a health baby girl, Natalie. It was a
difficult delivery, but I recovered just fine. Three days later we were
released from the hospital and I was able to take Natalie home for the
first time..."
Read Nicole's story including a one year anniversary update.
Steve
Hodgman was slow to seek care for his symptoms, even after
urging by his wife and advice from a nurse, because he could not
believe that any significant condition could happen, given his
heretofore healthy life that included a 5-6 mile daily run.
When he was found to have pulmonary emboli, he wrote a play to
depict the seriousness of blood clots.
Read Steve's Story.
Jeanne Krull
- Even Athletes are afflicted by blood clots.
"I was logging more than 100 miles on my bicycle in any given week. So,
at 46 years of age, it was not surprising that from time to time my legs
ached. Why wouldn’t they?"... Read Jeanne Krull's survival story.
Christa Larson tells her story as nurse / patient about her struggle with the medical system and double pulmonary emboli.
"My name is Christa and I
have been a cardiac nurse at South Shore Hospital in S. Weymouth, MA for
the past 15 years. My story is not from any of my many years of working
in the medical profession but rather of the challenges... Read Christa's Story.
Lynn Levitt tells her story of in her own words about fighting for her life and how she survived a deadly blood clot.
When I awakened from a deep sleep on the morning of June 12, 2003, I had
no idea what the awful pain in my right side was. Could it be the hotel
bed that I was sleeping in, the heavy box I had moved earlier in the
day, a cold coming on? I continued to try and “self-diagnose” for the
next week and a half until one eve- changing my husband Rob and I were
out for a walk. I began complaining of shortness of breath, and when we
got home, I noticed that my right leg was severely swollen. ...
Read Lynn Levitt's story.
Carmen
MacArthur's story demonstrates the risk of blood clots
associated with birth control pills. Although the prescribing
physician mentioned the risk, this patient did not think that
she would be affected. She chose the therapeutic benefit of the
pills to treat heavy menstrual bleeding over what she perceived
as minimal clotting risk. Unfortunately, the risk outweighed
the benefit in her case, and she developed pulmonary emboli.
Read Carmen's story.
Kelsey
Minarik tells her story. This is the story of a young woman who
learned that blood clots can happen to people of all ages, and that women
who choose to use hormone-based birth control for any reason should realize
that the associated clotting risk is real, not just an empty warning.
While I was on a 5 hour plane ride from Los Angeles to Manhattan, I felt a
lingering ache in the back of my left knee that was uncomfortable, but
nothing that caused me to feel immediate alarm...
Read Kelsey's story.
Harold Mitchell
shares his story about living with Antithrombin Deficiency and provides
advice to others about how to learn from his experience.
In October 2008, difficulty in breathing led Harold to believe he was
having a heart attack even though he was not experiencing chest pain.
He was rushed to the hospital in an ambulance where an alert physician
recognized the symptoms and ordered chest scan. The test revealed
large blood clots in both lungs.
Read Harold's story.
Andy
Morris describes his blood clot survival story starting with
an all too common misdiagnosis (appendicitis and Crohn’s Disease in this
case) resulting in multiple surgeries. By the time the treating
physicians realized the underlying case was blood clots, Andy had
already had removed about 4 feet of intestine.
Read Andy's story.
Pam Pariana discusses how her life was saved from a deadly blood clot due to a story on Good Morning America.
"It’s because of a
Good Morning America segment about pain in the back of the leg that I
was listening to while getting ready for work that I am able to tell my
story. Having similar pain to what they were talking about prompted me
to call my physician and I was scheduled for an ultrasound that
evening. Little did I know I was going to end up in the hospital with a
1-1/2” blood clot!..."
Read Pam's story.
Lori Preston,
Lori Preston, founding member of NBCA, learned of her inherited clotting
disorder during pregnancy.
“I remember the conversation as if it were yesterday. My mother shared
with me painful recollections of numerous miscarriages ..."
Read Lori's story.
Jassmin
Robinson is a 14 year old from Ohio diagnosed with May Thurner
Syndrom in 2008. Another name for this syndrome is iliac vein
compression syndrome, because the left iliac vein in the groin is
compressed by the right iliac artery. This increases the likelihood of a
DVT in the left leg. Jassmin shares her story about her stent treatment.
Read Jassmin's story.
Janine Swiatkowski is a 41-year-old Sports Web Editor for
ocregister.com from Santa Ana, CA who enjoys active outdoors pursuits like running, hiking, rollerblading and snowboarding.
Read Janine's story.
Beverly Thao
has had multiple blood clots beginning when she was only 18. The causes of her blood clotting episodes are still undetermined. "I
had just been released from the hospital due to a severe allergic
reaction. I was allowed to leave, but with some medication and no signs
of blood clots. It had been just two days after I left when I began to
..." Read Beverly's story.
Elizabeth Varga, one of NBCA's Directors and Chair of the Education and Communication Committees, shares her story of learning that she has the factor V Leiden gene mutation.
"“I discovered that I was heterozygous for the factor V Leiden mutation
in June of 2000 after my mother tested positive during a workup for
superficial thrombophlebitis. My primary care physician recommended that
I be tested, since I was taking oral contraceptive pills..."
Read Elizabeth's story.
Leah
L. Wajdyk's Deep Vein Thrombosis / Pulmonary Embolism Patient Story.
This patient injured her knee while getting on an airplane at the start of a
business trip. She developed a deep vein thrombosis post-operatively that
was not detected until she could not breathe and went to the Emergency Room,
where a pulmonary embolism was diagnosed and treated. She feels lucky to be
alive and thrilled to have a successful pregnancy and a healthy son in the
aftermath. Read Leah's story.
Beverly Porter is a patient who sought care for some typical symptoms of a DVT. Her condition was misdiagnosed and a pulmonary embolism occurred during the time she was being treated for the wrong problem, and was therefore fortunate to survive. Read Beverly's story.
Jane's Story - This patient story is from a young woman in Mexico who prefers to stay anonymous, even as she was eager to share her experience. The story underscores the challenge of accurate and timely diagnosis of clots going beyond the US, and the impact of the uncertainty resonates world wide. To honor the author's wishes she is referred to as "Jane" in this article. Read Jane's story
Michelle Sirois survived a bilateral pulmonary embolism caused by blood clot. Read Michelle's story.
Velton Wainwright Tudor’s Story - In October of 1993, when I was 47, my left leg started swelling from my hip to my toes and I started experiencing trouble breathing. My leg felt so tight, that I couldn’t bend my knee, so I contacted an orthopedic practice who then referred me to an internal medicine physician, Dr. D... Read the rest of Velton's story.
Laura Zain, from Livonia, Michigan shares her story, "A Journey with Kyle" about her son, age 17, who survived a blood clot to his brain. He was later found to have extremely elevated homocysteine levels.- Read Laura's story.
