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ClotCare is a member organization of the Coalition to Prevent Deep Vein Thrombosis. Click here to learn more about the Coalition to Prevent Deep Vein Thrombosis and DVT Awareness Month, which is held each March.
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Deep Vein Thrombosis (DVT) & Pulmonary Embolism (PE) Blood Clots
Patient Stories
Marie Bussey
Updated January, 2013
According to the American Heart Association, up to two million Americans are affected annually by deep vein thrombosis1. Of those who develop pulmonary embolism, up to 300,000 will die each year2,3. That is, more Americans die annually from DVT/PE than from breast cancer and AIDS combined, which account for about 55,000 deaths annually2,3. Yet, according to a national survey sponsored by the American Public Health Association, 74% of Americans have little or no awareness of DVT. Deep vein thrombosis also is among the leading causes of preventable hospital death. Even more disturbing is the fact that, according to a U.S. multi-center study published by two of ClotCare's editorial board members, 58% of patients who developed a DVT while in the hospital received no preventive treatment despite the presence of multiple risk factors and overwhelming data that prophylaxis is very effective at reducing these events (Goldhaber S, Tapson V. A prospective registry of 5,451 patients with ultrasound-confirmed deep vein thrombosis. The American Journal of Cardiology 2004;93:259-262.).
The numbers are staggering, and these statistics are for the US only. Of course, deep vein thrombosis and pulmonary embolism affect people all across the world.
In my experience, people who have had their lives affected by blood clots want to share their stories. They don't want others to suffer the same experience. Over the years, we have collected many patient stories at ClotCare. Below are links to the stories that others have been so kind to share. What I find most telling about these stories is that DVT and PE can affect anyone. A perfect case in point is the recent news that star tennis player Serena Williams recently suffered a pulmonary embolism. You can read more about Serena Williams' experience with pulmonary embolism at http://sportsillustrated.cnn.com/2011/.tennis/
03/02/serena.williams.embolism.ap/index.html.
If you would like to share your story with others via ClotCare, please contact Marie Walker via email at webmaster@clotcare.org.
Patient Stories
Lives Affected by Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE) Blood Clots
David Bloom's DVT Story: An Interview with Melanie Bloom
When NBC News Correspondent David Bloom embedded with the 3rd Infantry Division to cover the war in Iraq, his wife Melanie worried daily about the dangers of war. But it wasn't a landmine, bombing, bullet or an ambush that took her husband's life. It was a blood clot that traveled to his lungs.
"When I received the call the night David passed away (April 5, 2003), I was clearly in a deep state of shock. They said that David's death was due to 'pulmonary embolism', a complication of 'deep-vein thrombosis'. I had never before heard of this condition . . . that night my life and the lives of our three little girls were forever altered...." Click here to read David Bloom's story.
Cedric Bills' DVT Story
I was way too young for this to happen, but in August of 2002 when I was 37 years old I was struck with blood clots. It all started one Monday morning after I had done some extensive car traveling over the weekend. I woke that morning and noticed I had a pain in my left calf when I stood up....Click here to read Cedric's story.
The Story of My Mom, Carol B.: A Life Cut Short by Pulmonary Embolism (PE)
This is my second attempt at putting into words the story about my mom Carol B. She died suddenly on April 2, 2005 from a pulmonary embolism (PE), secondary to deep vein thrombosis (DVT). The first draft I wrote of her story was very factual and impersonal. So unlike her, so unlike me. Bear with me as I attempt to share with you her story. I do this not only on a personal level to help with my healing in grief but also with the hope that re-telling this experience may help save a life....Click here to read Carol's story.
Mickey's Story - DVT & Leukemia
During the week of March 5, 2007, Mickey, a 4-1/2 year old little boy became sick. After taking him to his pediatrician on Wednesday March 7th, he was diagnosed with a "stomach bug" and was told to come back later in the week if he did not improve. On Friday, March 9th he was taken back to the pediatrician only to be told that he now had a respiratory infection and was transferred by ambulance to Vassar Brothers Hospital (VBH). During his evaluation at VBH he stopped breathing and had to be intubated and was immediately air-lifted to Westchester Medical Center Children's Hospital, where he remained on the respirator and underwent 2 days of various tests. On Monday, March 12th he was diagnosed with Leukemia ALL, along with the respiratory infection and they immediately started chemo treatment via spinal taps. He remained in ICU for 3 weeks on the respirator, at which time he developed a blood clot in his left leg....Click here to read Mickey's story.
Jackie Davis suffers chronic leg swelling due to surgery-related DVT
I just read one of your stories about a man who broke his ankle, and later developed a very dangerous blood clot. I too, have a similiar story. My case happened 3 years ago, when I fell in my living room and broke my ankle on both sides. The orthopedic doctor had me wait for almost a week before he was able to do surgery due to the soft tissue swelling. After the surgery was performed - about 10 days or so, my leg started swelling and the cast started to feel increasingly tight....Click here to read Jackie's story.
Deep Vein Thrombosis (DVT) Patient Story: An Interview with Mark Hackley
Recently Mark Hackley took the time to share with me the story of his experience with deep vein thrombosis (DVT) and pulmonary embolism (PE). Mark is a 45 year old singer/songwriter living in Waynesboro, VA who suffered a pulmonary embolus in June 2006. "I want people to know that you don't have to be 65 years old like vice president Dick Cheney to suffer at DVT," Mark told me. "I was performing a private concert in northern Virginia last summer when, like Cheney, I noticed a dull pain in my left calf. After a day of much more intense pain in my right chest area I was diagnosed with a pulmonary embolism, most likely originating from a blood clot that formed in my leg," explained Mark....Click here to read Mark's story.
Tom Bolser's DVT Story
I was an active 52 year old male at the time of the first incident. My wife (Julie) was a school teacher, so during her spring break we liked to travel. We had traveled to Martinique from Seattle. It was a long flight going down because we were using our air miles. While playing in the ocean the day before our return, I felt something strike the back of my leg. When I got out I could hardly walk on it. Julie helped me to a lounge chair and got ice and we elevated and iced the leg....Click here to read Tom's story.
21 year old college baseball player Dominic Knight survives multiple blood clots in his lungs following a 12-hour bus trip
My Son Dominic - my 21 year old collegiate athlete son Dominic - was diagnosed with Pulmonary Embolisms in January of 2009. Dominic, fortunately with the grace of God and some wonderful doctors at Northwestern Medical Hospital in Chicago, survived this horrible condition. I had never heard of this life threatening condition until I received that phone call that changed everything....Click here to read Dominic's story.
Blood Clots in the Lung (Pulmonary Embolism - PE) at 28 Years Old: Bonnie's Story
I'm talking about this because I want everyone to know the risks and symptoms. This is not something I thought could happen to me. Recently, I was diagnosed with pulmonary embolism, a blood clot in my lung. I'm 28 and 140 pounds. I'm an otherwise healthy person. I exercise. I eat well. I only drank and smoked occasionally, once a month out at the bar with friends. I am not the typical victim, but it still happened to me....Click here to read Bonnie's story.
Mitzi Silliman - A Life Cut Short by Pulmonary Embolism
My name is Cheryl Hildebrand and this is my story related to DVT. My life forever changed on March 8, 2007 when my partner of 17 years, Mitzi Silliman, died suddenly and unexpectedly from a Pulmonary Embolism caused by Deep Vein Thrombosis....Click here to read Mitzi's story.
Dave Bock: My Story of Having a DVT/Pulmonary Embolism
On March 8, 2008, while visiting from Arizona, I was seriously injured when I slipped and fell in Upland, California. I was rushed to the emergency room of the hospital where I was examined. The emergency room doctor diagnosed me as having sustained lower leg fractures to my tibia and fibula (left ankle bimalleolar fracture). I was in a great deal of pain and the fractures needed to be repaired by open reduction internal fixation surgery. However, the doctor just gave me a prescription for a pain killer, put a cast on my left leg and told me to follow up with my primary care physician upon returning to my home in Arizona....A few days later on March 14, 2008, I experienced trouble breathing and was taken to the Sun Health Del E. Webb Hospital emergency room. Based on diagnostic test results, I was diagnosed as suffering from a pulmonary embolism brought on by blood clot formations in the veins of the leg near the fracture sites....Click here to read Dave's story.
Deep Vein Thrombosis (DVT): A Silent Killer
A patient's story written by Stacey Anderson
Hello. My name is Stacey Anderson. My husband passed away suddenly last September at the age of 42 due to DVT and PE. No signs or symtpoms and extremely fast. Most definatlely a "silent killer". After picking our son up from his frist middle school dance, my husband came home to watch a little television and fell asleep in the recliner. This was basically routine for him at night before actually getting up to come to bed. Only this particular night, that never happened. Our 4 year old and 11 year old sons found him the following morning still in the recliner, unresponsive and not breathing. Here one day, gone the next....Click here to read Stacey's story.
Cassie Sheffield & Noah Caiden Brown: A baby taken from his mother by blood clots
Hi, my name is Cassie Sheffield and I am 20 years old. Four years ago at the age of 16 I had my first episode with blood clots....During the first trimester of my pregnancy my mom (who has also had some blood clots) and I were both tested for clotting disorders. Our fears were confirmed, we have hereditary anti-thrombin III deficiency....
Both Cassie and her newborn Noah were affected by blood clots shortly after he was born. Sadly, Noah's life ended after just two weeks. Click here to read Noah's story.
Pulmonary Embolism at 22: Tiffany Psilovikos' Story
I went to Hawaii with my family in August 2010 for a college graduation trip. Upon our return flight (a red eye into LAX) I got up out of my seat and had severe calf pain in my left leg. I attributed it to running and didn't think much of it that day....I then followed up with a vein specialist who took a third ultrasound and he found not one, but two blood clots....Unfortunately, the following morning, 5 days after I returned from Hawaii I had severe chest pain- it felt like an elephant was stomping on my chest. My mom took me into the doctors and they rushed me to the hospital where they found out that one of the blood clots had moved to my lung....Click here to read Tiffany's story.
My DVT/May-Thurner Syndrome Story for ClotCare.org: Phyllis Hayes' Story
In 2005 I was standing in front of my TV doing some Yoga stretching when I felt a sharp pain in my left groin. It went away and I forgot it. The next morning my leg felt “different” and my calf was a little swollen, but I had a busy, active day which included mowing the front yard, and I ignored it, even when it was painful to walk on early that evening. I always mow in jeans, so I was shocked to see a deep lavender and very swollen left leg as I stepped into the bathtub.
I called my son, a PA who lives out of town, and he said, “You’ve got a DVT. Call someone to take you to the ER now and don’t rub it....” Click here to read Phyllis' story.
A Totally Healthy Person gets a PE: Pam Knell's Story
I am a 67 year old teacher who had taught pre-k for 20 years. Last summer I worked in a summer camp and thought I picked up a cold and cough from the young children. I coughed so hard that I thought I had pulled a muscle in my chest. I had a fever and went to a walk-in weekend clinic. The doctor listened to my chest and then put me on an antibiotic. A week later I still had a fever of 103°F, couldn't breath and was weak. One night I couldn't breath and thought I was having a heart attic because of the chest pain so we called the local ambulance and went to the hospital....Click here to read Pam's story.
PE Patient Story: Suzanne D'Innocenzo
When I was 29 and pregnant for the first time, I noticed "lumps" on my thighs. The doctor said they were external clots, and I gave myself heparin shots for the duration of the pregnancy and for 6 weeks after. My doctor told me never to go back on birth control.
I had several surgeries after that situation, but never any problems.
Then, at the age of 55, I went on "bioidentical hormones" to help with menopause. A week after going on the pills, I went on a 12 hour car trip to Texas for 4 days. My sister that I was traveling with came down with a cold, and when we started the road trip back, I was coughing a lot, but thought it was a start of a cold. We were in Amarillo, TX for the evening when the coughing got much worse, out of control. My sister asked if I thought I needed to go to an emergency room, and I had the feeling I should....Click here to read Suzanne's story
Jennifer Pollan's Story: Miscarriages, Pneumonia & Blood Clots
My husband, Michael, and I had a very frightening and sobering holiday season during 2010. Right after Thanksgiving, for a week and a half, I thought I had pneumonia, confirmed by two chest x-rays. I'm overweight and out of shape, but I'd had pneumonia prior to this, and the fatigue, exhaustion and shortness of breath I experienced with this bout was much worse than ever before. I also wasn't coughing as much as I had with previous bouts of pneumonia. With this experience, I'd get out of bed, go about 10 feet to the bathroom and go back to bed. All I wanted to do was put my head on the pillow. It would take five minutes to get my breath. One morning, I headed upstairs to get ready for work. Before I got to the top of the stairs, I had to stop because I was out of breath. While I was standing on the stairs, hanging onto the railing, everything started to go black; my neck, shoulders and back started to burn; and I felt as if someone had their hands on either of my shoulders, trying to push me down. I knew I was going to pass out....Click here to read Jennifer's story.
A 19 Year Old Girl with DVT & PE Clots: Suzanne Lambregts Story
My name is Suzanne Lambregts. I'm a 19-year-old girl who has survived two consecutive pulmonary emboli (PEs) and deep vein thrombosis (DVTs) blood clots in a period of 9 months. My primary care doctors and hematologists have not been able to come up with a reason for either incidence. My purpose in sharing my story is to raise further awareness about blood clots, as well as provide inspiration to those struggling. The date of my first diagnosis was June 1, 2011, when I learned I had DVTs in my left arm, total occlusion to the subclavian vein, and an acute pulmonary embolism in my left lung....Click here to read Suzanne's story.
Extreme Athlete Mike Fitzgerald gets a Deep Vein Thrombosis (DVT)
...On September 5, 2012, I crashed on my downhill mountain bike coming in for a landing which was not as big as some others I have performed . The break was a high impact break, and my leg went numb immediately. Luckily my friend was able to utilize his truck to get me to the ER. At the ER I was told that I crushed my tibial plateau and cracked my heel....Click here to read Mike's story.
Blood Clots and Blood Thinners (Anticoagulants): Lillian Juodis' Story
Here's my story. I hope it will help someone else or at least quiet an anxious time in their lives. At present, I'm a 67 year old female, in good health. April of 2008, I was diagnosed with a clot blocking the hepatic vein in my liver. "Blood thinners" (anticoagulants) for six months were the only solution. There was an incredible amount of pain involved....Click here to read Lillian's story.
Deep Vein Thrombosis, Factor V Leiden & Protein Gene Mutation: Despina Nicholas Brosnihan's Story
In February 2013, I considered myself the picture of health. Though forty-eight years of age, I felt that I was doing all of the right things. I was thin, ate a healthy Mediterranean diet, didn't smoke and exercised 4-5 times per week. In fact, I had even recently commented to my husband that I felt better than I had a decade earlier. Little did I know that I was soon to experience the biggest health crisis of my life....Click here to read Despina's story.
Deep Vein Thrombosis & Factor V Leiden: Jessica Leary's Story
I was inspired to share my story after seeing Melanie Bloom on the Today Show. I had a DVT related to a hereditary blood condition that I was entirely ignorant about. I would like others to know about this possibility because it was a dangerous situation and I don't want others to go uneducated about this medical issue.
I am 36 years old and have what I consider to be a unique, yet probably common DVT story. I am a healthy, active, athletic adult. I participate in running events, up to twenty per year, as well as enjoying hikes, weight training and yoga practice regularly....Click here to read Jessica's story.
DVT and Saddle Pulmonary Embolism: Wand Logan's Story
At the time I was a 48-year old, divorced mother of three grown children. On July 25, 2012 I had surgery on my right foot. I was back at work five days after the surgery, only missing three days of work. I had to wear a boot to protect my foot for 4 weeks after the surgery and was advised to keep my foot elevated as much as possible. About 2 or 3 weeks after the surgery, I began having an occasional feeling in the back of my leg, like the tendon was overextended or strained, and thought it was from elevating my leg on a chair at work. This continued to increase but wasn’t terribly painful to cause me to be alarmed....Click here to read Wanda's story.
References
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Hirsh J, Hoak J. Management of deep vein thrombosis and pulmonary embolism. A statement for healthcare professionals. Council on Thrombosis (in consultation with the Council on Cardiovascular Radiology), American Heart Association. Circulation. 1996 Jun 15;93(12):2212-45.
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Heit JA, et. al. Abstract #910; 2005:106 (no.11) part 1 of 2, pg. 267a.
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Gerotziafas GT, Samama MM. Prophylaxis of venous thromboembolism in medical patients. Curr Opin Pulm Med. 2004 Sep;10(5):356-65.
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