Stories are from stoptheclot.org
In Memory of Anna Frutiger: Her Blood Clot Story
Anna Frutiger embodied brains, beauty, compassion, athleticism, and as such, seemed the picture of health while she was living her dream of becoming a dentist. No one expected that a blood clot would end her dream, and it seemed beyond belief that Anna died on May 20th, 2010 from a pulmonary embolism (PE) due to an undiagnosed deep vein thrombosis (DVT), a month after her 23rd birthday.
Anna felt pain behind her knee and in her calf four months before she died, and she attributed her pain to the stress and strain of training for a half marathon or a muscle pull. Her friends at dental school noted that she limped, and Anna was aware of becoming short of breath whenever she ran.
When her leg pain persisted, Anna saw an orthopedic surgeon who found no injury to suggest a muscle pull. After a thorough physical and review of her medical history, her doctor suspected a blood clot in her lower leg. Anna’s only known risk factor was that she was taking a third generation birth control pill. Results of an Ultrasound/Doppler of her leg were negative for DVT. At a follow-up to that exam 3 weeks later, her leg was normal shape and size, and she no longer felt any leg pain. As a result, her doctor discharged her.
After her first year finals at the University of Pittsburgh School of Dental Medicine, Anna traveled quite a bit, and flew for six hours over two consecutive weekends, then went to see friends in New York City the next two weekends which involved an eight hour bus trip with one ten minute stop. Anna complained of not being able to breathe easily when she carried groceries up to her apartment right after the bus trip. She told her parents that her symptoms were probably stress–related, since vacation was over, and the demands of school were resuming.
The next morning, Anna called her best friend to drive her to school because she felt extremely weak and didn’t think she could walk on her own. She wanted to push herself to class, because she had two quizzes that day. Anna collapsed on the lawn outside her apartment after walking downstairs, and blacked out for several seconds. Her friend called 911 and an ambulance arrived within minutes. Anna was conscious at that point, and asked her friends to call her parents in Michigan.
Anna made it to the Emergency Room, but had a cardiopulmonary arrest a few minutes after she arrived. She was immediately taken to surgery to try to dislodge the huge blood clot that caused her massive PE. Over the next two days, a team of doctors and nurses worked round the clock to keep Anna alive in hopes that a miracle would happen, something her family and friends wished for with all their hearts. Her family was euphoric two days later, because she moved her arms during the night, and their hope was that she would awake from her coma. Their hopes were dashed almost immediately when the neurological tests showed that she no longer had brain activity. Anna’s family had to make the agonizing decision to remove life support.
Despite their grief, they chose to donate Anna’s organs. Anna gave life to another, so continues to be life-giving even after her death.
Her doctors immediately tested her family and found no genetic blood clotting disorders. Her autopsy determined that Anna was not predisposed to blood clots. It seems that the birth control pill and her concentrated travel in one month were her major clotting risks.
Although Anna tuned in to her health status, 23 year olds do not suspect that anything fatal is brewing, and she probably did not link her birth control to her leg pain, or the possibility of a DVT. Although her doctor suspected a blood clot, he saw her as a low risk. Moreover, the Ultrasound/Doppler testing is effective for DVT diagnosis only 3 out of 10 times. Her family believes strongly that had Anna and they had the awareness and knowledge of the risks factors and signs of DVT in the months before Anna died that she might be alive today.
Anna loved her friends and family with every ounce of her being and always gave 110% to others, no matter what was at stake. Two of her closest friends, Sally Vitez and Michael Ratajczyk, fundraised for the NBCA/ Stop The Clot® by running a marathon and half marathon respectively in Anna’s memory.
They have raised more than 7,000 to promote awareness of DVT. Anna’s family is sharing her story to show that a blood clot can happen to anyone, at any age, and at any time, and that awareness of signs and symptoms of DVT and PE helps save lives. Anna’s story has already saved the lives of several individuals who had similar symptoms and sought medical care for blood clots or testing for clotting disorders. Her story prompted them to seek care immediately for similar symptoms, and because of the impact of Anna’s story, lives were saved.
The Frutiger family is committed to doing everything in their power to support public awareness efforts of National Blood Clot Alliance to Stop The Clot®.
Take Home Messages
Blood clots can happen to young, seemingly healthy people Birth control pills increase risk for blood clots
Tell family and friends the symptoms of DVT and PE so they know that a “muscle pull” may be a blood clot in the leg, and unusual shortness of breath may be a symptom of a PE
Organ donation help a loved one live on
Fundraising in memory of a loved one is a positive channel for grief to support public health messaging
Katie’s Blood Clot Survival Story
Story by Beth Andersen
Age 16. Slender. Non-smoker. At risk for a blood clot from birth control? Yes!
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.
After a few months on an old brand of birth control, Katie was switched to a 3rd generation pill, The trouble began almost immediately. She first noted a cramp in the back of her thigh when she walked up stairs, and the diagnosis was determined to be sciatic nerve irritation.
Katie woke before dawn one morning with excruciating chest pain. It hurt so bad to that she had difficulty taking a breath or making any move to grab her cell phone off her bedside table. At 10 am, I found her sitting bolt upright in bed with puddles of tears streaming down her face. She asked me in a whisper to take her to the doctor. This is a kid who is doctor phobic because of medical problems when she was an infant. She rarely cries, and barely shed any tears the three times she broke bones.
We called the cardiologist and he said to wait for the appointment we already had for the next day. A whopping dose of ibuprofen helped, and the next day the doctor listened to her lungs. The chest pain was diagnosed as pleurisy (inflammation of the lining of the lungs), and subsided after a few days of ibuprofen and pain killers.
A few days later, Katie spent 6 hours on her feet at a concert with nothing to drink. When she got home, she took off her jeans and freaked out. I took one look at her blue, swollen leg and had my husband carry her to the car. On the way, I called the cardiologist and informed him that Katie had a DVT and PE. I knew enough about medicine to know what I was seeing, even though I was unaware of how serious it was. When the admitting doctor seemed alarmed, I knew things were bad. A short time later, Katie was in a helicopter on the way to a larger medical center.
At both hospitals, the reactions of the healthcare team were contradictory. Every nurse assessment was that it was not a DVT, because usual symptoms are skin that is red and hot, not cold and blue. Yet the doctors all said, “That’s a big DVT. I bet you are on the pill, right? Those new pills, right?” I later found out that my doctor will no longer prescribe 3rd generation pills or the new ring style birth control because he has seen too many clots in young women.
The clot finally stopped growing after 4 days of treatment. Her clot (DVT) ran from low in her calf, up the vena cava and almost to the kidneys. Katie’s condition was considered so critical that she was not even allowed into the adjoining hallway to see the Queen of England who was touring the hospital at that time.
After 19 days, Katie was released on Coumadin®. Injectable low molecular weight heparin was not working well, and Katie has no belly fat so the injections were a nightmare for her. She was only allowed to stay on Coumadin for six months, because there is a higher risk for teenagers to be involved in car accidents, which increases any potential to die from a bleed. We looked into extricating the clot, but she was too sick and we missed the window of opportunity – after a few weeks, the clots get too stiff, and extrication is not an option.
I’m very proud of Katie. She wears her compression stocking – even with a mini skirt or a prom dress. She was very faithful in taking her medication and watching her diet, wore her pretty bracelet to alert people that she was on Coumadin, and was persistent about the physical therapy to counteract a back problem she developed from sleeping upright for 6 weeks. She is not quite over her needle phobia, and now uses numbing cream to prepare for and cope with blood draws. She yells back at the TV when she sees the birth control ads. Sadly, she had to drop a cosmetology school program in which she had enrolled because she just can’t stand up for long periods. And it is tricky for her to find jobs that keep her active but not on her feet for hours at a time.
I’m joining NBCA because I think public awareness of clot symptoms is vital. I also want gynecologists to learn what hematologists know about birth control and a family history of clots – predictable periods and clear skin are not worth dying for!!
Katie is also joining a lawsuit against the birth control manufacturer.
Luckily, My Story Ends With Hospital Discharge — Kaila Butler’s Story
On October 25th, 2012, I called my boyfriend to come and pick me up from work, despite living just a 10-minute walk away. The bad shoulder and back pain I had been dealing with in recent days turned into a sharp stabbing sensation throughout my body, leaving me breathless and unable to walk more than a few steps at a time. I pride myself on my ability to walk things off, and I have a very high tolerance for pain, so it made me very anxious thinking that it was a bruised rib. I had hoped that my boyfriend would take me home and put me to bed, but at his insistence I ended up at the Emergency Room at Burnaby Hospital instead.
The ER wasn’t insanely busy that night, but there were enough people ahead of me that I was worried when they pulled me into the back room almost immediately for testing. They started running tests on my heart to make sure I wasn’t having a heart attack. After they ruled a heart attack out fairly quickly, there was still something about my heart rate that worried them. I was immediately sent in for a chest X-Ray and blood work. I kept asking the nurses to just pop my rib back into place and send me home, but was told I needed to stick around for the results of my blood tests because my chest x-Ray was all clear.
During my entire ER experience, I couldn’t quite shake the feeling that everyone was tiptoeing around me. At around midnight, less than three hours after getting to the ER, I was given the most awful shot of blood thinners and then sent home. I was told the shot in my arm was preventative and that it was highly unlikely there was anything wrong, but I would have to go back the next day for a CT scan.
After a sleepless and very painful night, I went in for my CT scan. I was hooked up to an IV and told to lie still while a machine took scans of my lungs. It hurt so badly to lay flat and breathe deeply that my body was convulsing.
A resident in the waiting room was telling me I was likely dealing with bad muscle bruising in my back when the CT scan results came in. His face dropped while he was reading them and he excused himself quickly saying, “I think you may have a pulmonary embolism. I’ll be right back.” He went across the hall where I could hear him and the doctor arguing about why I hadn’t been admitted or seen by a specialist. There were phone calls placed, more blood thinner shots administered (this time into my belly) and a few hours later I was admitted into the cardiac ward for monitoring. I spent the next six days in that bed, not allowed to get up to use the washroom, not allowed to shower, and closely watched. I had a fever and accelerated heart rate. I was asleep most of the time.
Luckily for me, my blood clot story ends with being discharged from the hospital. I spent the next 7 months on oral blood thinners, and I still deal with anxiety, some chest pain and shortness of breath, but it was determined that my pulmonary embolism was caused by my birth control pill and not other risk factors. I can’t say I live without fear that it will happen again, it’s incredibly hard to bounce back after being treated so fragile to living a normal life again. I cannot say enough good things about the nursing staff that took care of me. They always had a smile on their face, they always stuck around to chat, and they didn’t fuss about my boyfriend staying the entire 6 days in the hospital with me.
After having nurse after nurse and doctor after doctor tell me how lucky I am to be alive, all I can do is agree with them and continue to live my life as full as possible.
Deborah Tyler’s DVT/PE Story as Told by her Twin Sister
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
Jessica Stadler’s DVT/PE Story
Jessica Stadler went from being a healthy, active young woman to someone with 3 pulmonary emboli (PEs), and she wants to alert everyone to the signs and symptoms of DVT and PE, so that they seek care right away.
I have always been considered the healthy one among my friends and family. As an athletic young woman, I have grown up athletic, am active, and exercise almost every day. I also eat healthily. I never thought that I would find myself in a hospital on bed rest at age 20 due to a pulmonary embolism (PE). I did a frantic phone search on PE to learn about what was happening and each description contained the word fatal. This was not reassuring. Even though I had no idea what the next few days would hold, I was confident that God was right there with me. I found myself wondering whether I would wake up the next morning.
I attended my college classes, worked and exercised daily, which is my typical routine. I did not feel like myself the entire week that my PE happened. I was more fatigued than my usual sleep-deprived self and I had no appetite. I felt my first chest pain during my workout on Thursday evening that same week. I thought I pulled a muscle, so I kept on running. Later that night I noticed I was also having trouble breathing and the chest pain persisted. On Friday, my pulse rate was incredibly fast and I still felt chest pain and short of breath, even when sitting down. My mom finally took me to an urgent care doctor because of my symptoms. They did an EKG on me that was normal. The doctor decided that I probably had inflamed lungs, so ordered a breathing treatment and sent me home.
When I woke up on Saturday, I did not feel any better, and went to an eight hour shift at work. I felt more horrible with each passing minute at work, and the shift dragged. My chest pain was constant and intense, my pulse was racing at a frighteningly high rate, and I could barely talk, much less breathe. I got even more concerned when I found it difficult to walk up a flight of 7 stairs that were easy for me to sprint before. I felt as if I was having a heart attack, and I got a burning sensation down my left arm as I drove to meet my mother for dinner. As soon as she saw me, she took me straight to the ER.
A CAT scan finally detected my 3 pulmonary emboli after 5 hours of other tests. The doctor figured out right away that I was on birth control pills. I was shocked that a medicine I had been taking for other medical reasons made me this sick. I no longer take birth control pills. It was not until 4 doctors and numerous nurses told me how lucky and blessed I was to be lying in the bed alive that I realized just how close I was to having an unhappy ending.
I ended up in the hospital for a week. I was unwillingly placed on bed rest for the first 24 hours until the ultrasound done confirmed that I didn’t have a deep vein thrombosis (DVT) in either leg. The next few days brought a heap of new information that overwhelmed me. Heparin and warfarin became my new best friends. After days of being counseled about my new life on blood thinners, I left the hospital to go back to my crazy life.
I took blood thinners for eight months and was given the okay recently to stop them. I tested negative for blood clotting disorders, although my doctor may repeat the tests in the future. There is no history of blood clots in my birth family. This whole experience has molded me into a new person. I thank God daily for blessing me with a new day to try to make a difference in this world. I have done things I would never have done before and am living with no regrets.
My goal is to encourage people, especially young women on hormonal birth control, to recognize that it carries some risk for blood clots, and to seek care should they ever experience any signs and symptoms of DVT or PE. Blood clots are not something that can be ignored. I was fortunate that I didn’t wait another hour to go to the ER, because I might have experienced a very different outcome.
Take Home Messages
Seek care immediately for persistent chest pain and/or shortness of breath Persist in seeking care if symptoms do not go away
Change in ability to do usual tasks or exercise can indicate a health problem
Birth control pills increase risk for blood clots
Learn signs and symptoms of DVT and PE and share them with friends and family
Ashleigh’s Blood Clot Story as told by her mother
I am a hardworking wife, mother, daughter, sister and friend. I have raised three amazing children and been married for just over 25 years. My family is very unique as we live close to each other and most of us work together in a family business. I am writing to share my story about how a blood clot changed our lives forever.
First, I would like to tell you about my Ashleigh – my first-born. She was a wonderful child. She and I had a relationship like no other – she became my best friend as she grew, and the love I felt for her was amazing. She graduated from high school in 2009. During her high school years, she was active in drama and show choir. She loved being on stage. Her goal was to go to cosmetology school after high school and she was well on her way.
In May of 2010 my daughter, Ashleigh was a busy 18-year old. She loved her younger brother and sister so much and they were fun to be around. We had just returned from a family cruse vacation in April and had made some amazing memories. Ashleigh had a wonderful boy friend. She was a cosmetology student with just about 150 hours left before she graduated and she was happy. Growing up she had some health problems with acid reflux, but for the most part she was pretty healthy.
It was Memorial Day weekend and we were looking forward to her coming home on Sunday night for our annual BBQ on Monday. She had been texting her brother most of the day, and we had made some fun plans at home for a family day. She was driving home from her boyfriend’s home, which was about an hour away. Ashleigh had spent the day laying in the sun and visiting with Rick and his family. She never told me that she didn’t feel well during the day. She drove in our driveway at about 7:00 Sunday night – She walked up our driveway and on to our deck. Her dad watched her put her hand on the door and fall backwards. She never opened the door to get into the house. She dropped on our deck and in seconds her dad and I were at her side; her brother and sister were standing watching. I immediately called for an ambulance and within a few minutes her dad was doing CPR and the ambulance had arrived – she came to for only a few seconds to look at her dad and say she was having hard time breathing – then she was gone.
They transported her to the hospital and an hour after we arrived we were told our healthy 18 year old daughter was gone. I believe we watched her die on our deck within minutes of her driving home, but I am grateful to all the people who tried to save her life.
After she died, there were many unanswered questions and many thoughts and ideas of what happened to her. After nearly 7 months of wondering we received the autopsy results that told us that our daughter had died from a pulmonary embolism (blood clot in the lung). This was just unbelievable – didn’t those have symptoms? Wasn’t that treatable? How could that happen to a young girl, no recent surgery or long trips? No reason why she would have a blood clot.
It has taken many phone calls, many letters, many questions and 1 simple blood test to understand how this may have happened. Ashleigh had prothrombin (a genetic clotting disorder), she was on the birth control pill, and we believe that is what caused her blood clot. We have now learned that her father, her brother, her sister, her paternal grandmother and several of her siblings are all positive for prothrombin too.
I am hopeful that through sharing my story and information about this genetic disorder with others that maybe, just maybe it will make a difference in a life. Maybe a young woman won’t suffer a miscarriage… Maybe a young girl will wake up tomorrow to create a lifetime of memories…. Maybe a mother won’t have to choose between a cardboard box, or a maple casket for her beloved daughter….
If research is true and approximately 5-8% of the US population has one of these clotting disorders and more than 60,000 Americans die each year from a blood clot (from the Centers for Disease Control and Prevention), then how can we make a difference to that percentage? Look around and think that of 100 people you know and know that nearly 8 can have this disorder. Think about all of your family members and wonder how many of them may have a blood clot silently within their body. Think about your wives, husbands, kids, and friends – wonder. While I realize that many people live with this disorder for years or maybe a lifetime with no symptoms – I know of at least one person that did not. Ashleigh was young; she was an amazing young woman who had so much to offer. I believe she would have made a difference. During a scholarship interview back in 2009, she was asked why she wanted to go to cosmetology school. She responded to the committee, “I want to have the chance to make people feel beautiful.” I know she would have made a difference, and maybe through her death and our willingness to share her story about this disorder, she has made that difference.
Take Home Messages
Blood clots happen to seemingly young, healthy people.
If you have trouble breathing and back or chest pain, see medical help immediately.
PEs can happen without any noticeable signs and symptoms of a deep veins thrombosis o DVT (leg clot)
Hormonal birth control increases your risk of a blood clot, especially if you have a clotting disorder.
Most people don’t know they have clotting disorders until they or a family member has a blood clot.
If a family member has a blood clot from a clotting disorder, consider getting tested.
Michelle Sirois’s Story
Three days after going to the doctor’s office to get another year’s prescription of Apri, a low dose oral contraceptive, I began having pain in the middle of my back, making breathing very painful. Of course my doctor had warned me that there is always a risk of blood clots with birth control, but she had only known of two cases, and both of those girls were obese, inactive chain smokers. I was an eighteen-year old runner and triathlete, three weeks away from my first marathon. I had never smoked in my life. In fact, I was in the best shape of my life. So, as I lay in bed, with the pain slowly radiating to my chest and shoulder, I kept thinking that it could not possibly be a clot. Although I was a little worried, I still flew from Boston to LA to go back to school and continued with my life as usual. When I was out with some friends for dinner and realized I was in too much pain to sit through a meal, I decided it was time to go the emergency room.
I was so lucky to have a doctor who took my case seriously and took the necessary steps to “make sure it wasn’t a clot” causing the pain. Both of us were shocked when my chest CT scan came back, revealing bilateral pulmonary embolism. I was admitted to the hospital, where I remained for eight days, including one in the ICU. Hematologists analyzed my blood, looking for something that would put me at risk for clotting, but came up with nothing. My normal Protein S and C levels and the fact that I’m heterozygous for the methylenetetrahydrofolate reductase gene indicate that it was birth control alone that caused my potentially fatal clots. Finally, I was discharged, taking Coumadin daily and injecting Lovenox every twelve hours.
It is hard to see this experience in a positive light, but the more I reflect on everything, the more blessed I feel. Even though my triathlon season was over, and the marathon I had trained so hard for was not going to become a reality, this diagnosis has changed my life in many good ways. I am no longer an invincible teenager. I see the value in every day of my life and understand the importance of caring for others and having people in your life that love you and care for you unconditionally.
I will make a full recovery, hopefully be off Coumadin in six months, and live a completely normal life. I feel that it is my duty to warn other young women about the risks of birth control. Listen to your body, and if something’s not right, get help right away. It saved my life, and it could save yours.