Living With Thrombosis & Thrombophilia

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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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 "NATT 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 NATT 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.

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.

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. 

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.

Amber Henderson - I have strong memories of many blood clotting issues that up my father seemed to face constantly. When I was about five and he was in his late twenties, he was hospitalized for a deep vein thrombosis. Because my father had to deal with blood clots most of my (and his) life,  I became so accustomed to it that I never really thought too much about it.  That is, until June 2009. - Read Amber'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.  

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, Vice President of NATT, shares her story as a woman who first 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 NATT'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.

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.