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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Nick Sanders was one of those individuals that you could not forget. It wasn’t just that he was 6 feet 6 inches tall, had red hair and played football. He was also a fun loving son, brother, grandson as well as a loyal friend and colleague.Read Nick’s story.

Jassmin Robinson is a 14 year old from Ohio diagnosed with May Thurner Syndrome 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.

Bridget Schaap thought she was having simple foot surgery, and was surprised to find that she developed a blood clot after it. Read Bridget’s story.

Cassie Sheffield and her birth family were affected by blood clots, and discovered that the family has a genetic blood clotting disorder, Antithrombin (AT) III deficiency, that carries a high risk for blood clots. Read Cassie’s Story.

Nicole Sheldon had a DVT and PE for which there is still not explanation, especially given that she is young and healthy. She has learned not to sweat the small stuff, and appreciates the important things in life. Read Nicole’s Story. 

Geraldine Siquieros is a nurse who ignored PE symptoms in herself that she would respond to immediately in a patient. Her experience taught her a lot. Read Geri’s Story. 

Cheryl Smith was short of breath for awhile. She was misdiagnosed with possible allergy or asthma until a pulmonary embolism was found when she finally went to the Emergency Room. She also learned that she has 3 blood clotting disorders: Protein C&S Deficiency and Antithrombin Deficiency.  Read Cheryl’s story.

Jim Smith had DVTs in each leg and a PE after a prostatectomy, something that he did not think could happen to him…. Read Jim’s Story.

Jessica Stadler went from being a healthy, active young woman to someone with 3 pulmonary emboli (PEs). Read Jessica’s story.

Jessica Stanley experienced physical trauma after a bullying incident in high school, from which she developed blood clots in her left leg and lungs. More…

Sharon Sullivan experienced a blood clot after surgery and c to alert others to the risks for and signs and symptoms of DVT/PE Read Sharon’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.

Lisa Thomas is Mrs Rosemount and is a contestant in the Mrs Minnesota pageant. She is using her pageant platform to promote awareness about risk of blood clots, because she is a survivor of a deep vein thrombosis (DVT) and wants to use the pageant microphone to help Stop The Clot® Read Lisa’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.

Eric Vignando’s story about a fatal DVT after surgery underscores the importance of post surgical blood thinner treatment. Knee replacement surgery poses risk for blood clots. Discuss needed length of treatment with your doctor, since there are more than one set of clinical guidelines about the appropriate length of treatment with blood thinners to prevent blood clots post-surgery.Read Eric’s story as told by Sophie Lambert.

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.

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