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Mary Bare wrote this story about the death of her twin sister Deborah from a pulmonary embolism. She is so motivated to spread awareness of signs and symptoms of DVT and PE and is using social media to do so via a Facebook page called Forever Deborah.
My name is Mary Bare. My story is personal, although it is not my own story. My twin sister passed away at age 33 in July of 2011, and that is about as personal as a story can get. Deborah Tyler was the best sister I could ask for, a twin, and best friend. Since her death I have made it my mission to teach others the signs and symptoms of blood clots, something I made sure to learn in response to her death.
Deborah was relatively healthy her entire life. She was outgoing and confident, even though she always battled her weight. I think she was beautiful, both inside and out.
I remember everything that happened to Deborah, beginning on Thanksgiving 2004, when Deborah felt leg cramps, which she thought was a Charley horse. I remember that she complained that her left leg was swollen and red as she was taking the turkey out of the oven.
A few days later, she returned to her work at a doctor’s office, who sent her straight to the Emergency Room (ER), where she was diagnosed with a deep vein thrombosis (DVT). They kept her overnight, taught her how to give herself shots of blood thinners, and how to use compression stockings. They thought her DVT was due to the fact that she took birth control pills. Deborah stopped birth control pills on her own after she researched her condition, even though her doctors did not suggest that she stop them.
Right after her DVT, Deborah tested positive for the blood clotting disorder heterozygous (one copy) Factor V Leiden (FVL). Deborah became anxious and depressed in the months following her DVT, but I saw her as a fighter, and she decided to live life and not let it stop her. Deborah encouraged me and my older sister Cindy to get tested for FVL. I tested negative, and Cindy tested positive for homozygous FVL (two copies of the gene). We learned a lot about FVL during that visit from a technician at the ultrasound clinic who was also positive for FVL, much more than we learned from the doctors.
Our father died of a heart attack at age 54, and our mother died of cancer at age 57, although she had DVTs that first occurred during her 40s. My father’s heart attack was not confirmed by autopsy, so may have been a PE, since we realize now they were each positive for FVL.
Deborah was constantly aware of her risk for blood clots. A year after her first DVT, she worried that she might have another clot, but testing showed that she didn’t. Deborah did not let her blood clot stop her from living or traveling, although she was not informed about any travel related risk for blood clots. I actually became envious of her travel to so many places.
Deborah met a man named Matt in 2009, and they began to date. She was the happiest anyone had ever seen her. They spent every waking moment together, and Deborah moved in with Matt in April 2011, although she became ill the following month. On Mother’s Day in May 2011, Matt took Deborah to the hospital because she felt a hot spot on her left leg again. It was red and swollen, and she was unable to walk on the leg. She was diagnosed with cellulitis, which was diagnosed and treated by the same doctors who took care of her original DVT, who were aware of her history of DVT and FVL.
She was hospitalized for several days for cellulitis, and was told there was a superficial, not a deep vein blood clot. They sent her home on bed rest, because she was still feverish, and she needed crutches to help her walk to the bathroom. They treated her with antibiotics and pain pills; she was not given any blood thinners.
Matt took wonderful care of her, and I think she realized just how much she meant to him and vice versa. She saw Matt as her best friend and someone who was always there for her, and he saw her as a source of great happiness.
Her leg took a long time to heal. Deborah did wear compression stockings after her first DVT, and occasionally in between her first and second. No one ever mentioned a possible complication of post-thrombotic syndrome (PTS). She was home for a week after her hospitalization, and went back to work the week after. She was cautious about using her leg, but it didn’t stop her. She and Matt adopted two adorable kittens, which put her on cloud nine!
She spent the next few weekends with friends she had not seen for awhile, and they caught up on old times. We think of it now as her way of being with them before her passing. About a week before her death, Deborah complained to Matt that she felt short of breath, which she thought was either summer heat, allergy-induced asthma from the kittens, or some weight gain.
She felt a little better after she used the inhaler that was prescribed for her, because her undiagnosed PE was being treated as allergic asthma. Her doctors did not tell Deborah to look for signs and symptoms of a PE, although she once mentioned to me that her shortness of breath might be due to a blood clot, but she convinced herself otherwise, because her inhaler improved her symptoms. She felt winded during a family celebration in early July, but seemed and acted like herself.
That same day, she asked her doctor to prescribe another inhaler for her breathlessness. Again, this was the same doctor who was aware of her DVT and FVL. Before she could fill her prescription for the second inhaler, I got a frantic call from Deborah to tell me that she called EMS because she was having major difficulty breathing. I called Matt and Cindy, and rushed to her house, which was less than 5 miles from me.
EMS was wheeling her out to the ambulance when I arrived, and she was alert and looking around. I followed the ambulance, and watched it turned on its emergency signal. I am very religious, yet I don’t even remember praying at that life-changing moment, which shows how stunned I was.
I went to the hospital where Matt and Cindy met me. A doctor and nurse asked us to come into a private room, which we knew meant bad news, so we asked that he tell us in the waiting room. He told us that Deborah passed away in the ambulance on the way to the hospital and could not be revived. I muttered some unpleasant words, and everything else became a memory in slow motion.
The doctors were shocked, so I said it was a blood clot, because she had FVL. Deborah had told the EMS workers about her history, but it was not passed on to the ER personnel. Sudden death is a terribly sad result of a pulmonary embolism. An autopsy confirmed her PE. If only I had found out about the possibility of a PE after a DVT some other way.
A PE took the life of a sister, a love, a friend, an aunt, and my twin. Shortly after we buried Deborah, I had a vivid dream of her telling me that I needed to get the word out about FVL. So I am trying!
I wanted to learn more, because my older sister also is positive for FVL. I decided to use the power of social media, so that I could reach out to others. I want to make a difference and alert others about factor V Leiden and risk for blood clots. I created a Facebook page called Forever Deborah to distribute this information, and am happy to say that it is a success.
Losing Deborah is difficult, but I get strength from my memories of her. I have learned so much, and want to thank Stop the Clot® for its web site that is a source of much information on blood clots and clotting disorders. I want people to recognize risks, signs and symptoms and need for treatment of DVT and PE.
There isn’t a day that goes by that I don’t wish I did more to encourage my twin to go to the doctor or to the ER sooner. I couldn’t save my sister, but if I can help even one person, it’s worth it. This is what Deborah would want.
I was lucky to have Deborah in my life, and am grateful for my family and friends. Deborah’s death still teaches us some lessons. Cindy has seen a hematologist and has tested positive for factor VIII and FVL (which we knew). They are keeping an eye on her and she takes daily aspirin.
I am so thankful that Cindy is clot free thus far. Deborah’s death left a hole in my heart. After all, she was my twin. The heaviness in my heart is lifted by hearing inspiring stories of survival. I have hope in the future! Together, we can all Stop The Clot®!
Take Home Messages
- Persist when there are signs and symptoms of a DVT, because it can be dismissed as a Charley horse
- Seek care immediately for serious symptoms, such as unusual shortness of breath
- Keep in mind that shortness of breath after a DVT is more likely to be a PE than newly diagnosed asthma
- Homozygous (two copies of the gene) FVL carries a higher risk for blood clots than heterozygous (one copy)
- Aspirin prevents arterial clots more than venous clots
- Hormonal birth control adds to risk for blood clots and should be stopped after a DVT
- What was diagnosed as cellulitis in this story may have been a second DVT
- Compression hose prevents post-thrombotic syndrome, a complication of DVT