Real Stories from People Living with Blood Clots
As a health professional, doctoral student, mother, and caregiver, Ena Wanliss is living the fulfilling life she always dreamed of. However, in the past 12 years, she has also faced the daunting experience of travel-related blood clots, not once but twice.
Her first experience with blood clots occurred in 2007. Shortly after returning home from an 8-hour road trip to Florida, Ena began to experience a discomfort in her right calf that would not go away. Eventually, she noticed her calf beginning to swell, with increased warmth to the touch. She went to her doctor, who told her, “I don’t want to scare you, but you may have a blood clot.” He immediately sent Ena to the emergency department, where imaging studies confirmed the presence of a blood clot in her calf.
While in the hospital, Ena was put on an anticoagulant, or blood thinner, a medicine that helps prevent blood clots. She was eventually sent home from the hospital, but began experiencing severe chest pain later that same night. She reached out to her brother, also a doctor, who told her to immediately return to the emergency department. Additional testing at the hospital showed a blood clot had dislodged from her leg and traveled to her lung. At the time of hospital discharge, Ena was advised to continue taking the blood thinner. She was monitored for 6 months. At the end of 6 months, a final image confirmed that the blood clot had disappeared, so Ena was cleared to stop taking the anticoagulant.
Ten years later, in 2017, after returning home from a 10-hour trip to Hawaii, Ena suddenly became aware, while sitting at the kitchen table, that she simply did not feel well. Her daughter asked if she could bring her some water, but before she had a chance to, Ena, sweating heavily, tilted backward and passed out. Her daughter immediately called an ambulance and Ena was taken to the emergency department once again. Once there, she communicated to her healthcare team that she had previously had a blood clot, so she was tested extensively for blood clots. Testing confirmed the presence of blood clots in her lungs.
To manage her blood clot condition, Ena is now on a newer anticoagulant medicine to help prevent future blood clots – a medicine she’ll be on for the rest of her life.
Throughout her experience, Ena has also suffered from post-thrombotic syndrome, a condition that results when a blood clot damages the valves in the deep veins of the leg, causing discoloration and pain. She now regularly sees a hematologist (a doctor who specializes in blood disorders), who monitors her health.
Ena offers the following tips for others who may find themselves in a similar situation:
- Don’t ignore any pain you feel. Address this right away with your doctor.
- Watch for the signs and symptoms. It is better to be safe and know the signs and symptoms than to remain unsure why you are experiencing symptoms.
- Be aware that travel lasting longer than 4 hours is a risk factor for blood clots. If you are planning to travel long distance, be sure to move your legs frequently to help prevent blood clots.
- Know your family history. This information can be valuable to discuss with your doctor.
- Be diligent in protecting your health by following your doctor’s instructions. If you have previously experienced a blood clot, take protective measures, as prescribed by your doctor, to do all you can to prevent future blood clots.
CDC thanks Ena for sharing her personal story.
I’m Debra Turner Bryant, and I want to share my experience with blood clots during pregnancy. Through my personal story, I hope that other women can better understand the very real possibility of a blood clot during pregnancy, and perhaps even save a life.
In 2013, at age 37, I was 11 weeks pregnant with my son. I was on my way to work, but having difficulty walking. Just weeks before, I experienced pain in my back and side, and was uncomfortable while sitting. I dismissed this to the fact that I was just feeling the aches and pains of pregnancy. I had a previously successful pregnancy with my daughter, so I pushed through and went to work. While at my desk, I noticed that my left leg had swollen to twice the size of my right leg. I went right away to my obstetrician to be checked, and from there I was immediately sent to the emergency department (ED).
In the ED, the vascular surgeon (a specialist highly trained to treat conditions that affect the veins and arteries of the body) came to my room shortly after the ultrasound imaging test results were in. He let me know that I had a deep vein thrombosis—a blood clot inside a vein in my leg. While this was very concerning for my own health, my main concern was what it could mean for my unborn baby. While in the hospital, I began receiving an injection of Lovenox®, a medicine that helps prevent new blood clots. When I left the hospital, I was told that I could resume normal activities and return to work within a few days.
My obstetrician wanted to make sure that no blood clot in my leg could break off and travel to my lungs. A blood clot in the lung, also called a pulmonary embolism, can be life-threatening. At 6 months pregnant, a medical device used to trap the blood clot before it reaches the lungs, called an IVC filter, was placed in one of my large abdominal veins to prevent this serious complication.
Throughout this entire time, I learned as much as I could about blood clots and pregnancy, and this knowledge helped me to stay as calm as I could. My main focus was having a healthy baby. However, near my due date, I was rushed to the ED very early one morning because of excessive bleeding. We learned that I had blood clots in my placenta (the organ that attaches to the wall of the uterus that provides oxygen and nutrients to the baby) and uterus (the womb), resulting in a complication of pregnancy in which the placenta separates from the uterus. To address this, I had an emergency C-section. My son Charlie was born 2 weeks early.
One month after delivery, I had a follow-up ultrasound. To my surprise, I was told my blood clot was much larger than first thought—it spanned from my groin to the knee and wrapped around behind my knee! I was then referred to an interventional radiologist, a specialist who reviews medical images and performs minor surgical procedures, at a major medical center in South Carolina. He confirmed that I had May-Thurner syndrome, a rare condition that occurs when a vein in the pelvis compresses the left iliac vein (a vein that passes through your pelvis and lower abdomen to circulate blood from the legs and feet to and from the heart), increasing the chance for blood clots in the pelvis and left leg. Suddenly, everything I had experienced to this point with blood clots was now becoming clearer.
Eventually, the interventional radiologist removed the IVC filter and treated me with tPA, a medicine that dissolves blood clots and improves blood flow. I also had a procedure called a thrombectomy to remove multiple blood clots that had formed in the veins in my left leg and pelvis. Stentsexternal icon were then placed in my veins to help keep them open. A few months later, the interventional radiologist placed two more stents in my veins because the first two became blocked by re-occurring blood clots.
During my pregnancy and after delivery I faced many challenges: experiencing ongoing pain, finding the right healthcare specialists to diagnose and treat my condition, and undergoing multiple surgical procedures. Now, I am under routine care of an amazing hematologist (doctor who specializes in blood conditions) who understands May-Thurner syndrome, as well as the risks of blood clots during pregnancy. The best part of my story has been the birth of my beautiful son Charlie, who is now 5 years old and one of the many joys of my life.
I offer these suggestions to help women who may find themselves facing blood clots during pregnancy:
- Protect yourself with knowledge. Make certain you know the signs and symptoms of blood clots. Ask questions throughout your pregnancy and after delivery. If you suspect any of the signs and symptoms of blood clots, contact your doctor right away. Be sure to do your own research and increase your understanding, rather than just accepting a diagnosis. You are your best advocate!
- Know your risk, and talk with your doctor to learn if you would benefit from a prevention plan. pdf icon[PDF – 611 KB]
- Be positive about your circumstances. Rest assured that you are not alone, and that others have experienced a similar journey with blood clots.
CDC would like to thank Debra for sharing this personal story.
I am a 47 year old male, and am a DVT survivor. I rolled my ankle in January of 2012 playing tennis. I went directly to the emergency room, and they put me in a boot. I wore the boot for 4 weeks, then removed it and began wearing an ankle brace. It was uncomfortable, and swollen, but the swelling seemed to go down each night. After 6 weeks, my ankle and calf were extremely swollen during the day; about 250% the size of my other leg. I showed it to some friends, who have had multiple sprains before, and they immediately told me that it wasn’t right. I called and set an appointment with my doctor for the next day.
Upon seeing my leg, the doctor immediately sent me to the hospital for an ultrasound. I sat out in the hospital parking lot, and did a webinar and conference call for a prospective customer before going in; I did not yet understand the severity of my condition. When the technician did the ultrasound, she informed me that I had blood clots up and down my entire leg, and proceeded to show me the screen and explain what it meant. They then had me check into the hospital. At this point, I thought they’d give me a shot, and I would still be able to make it to my friend’s house to watch the NCAA basketball tournament. He was cooking up steaks, and I purposely skipped lunch so as not to ruin my appetite. I had been walking on it, and had been flying for work, for the past six weeks. How bad could it be? Well, after having 3 or 4 nurses tell me that it was a miracle I was still here, and after talking to the doctor later that evening, the severity of the situation began to set in.
The doctor strongly urged me to have a procedure called catheter-directed thrombolysis. What happened to the magic shot and some medicine, so I could go eat my steak and watch basketball with my friends? The doctor said that the interventional radiologist had reviewed my ultrasound, and suggested we do the surgery Sunday morning. I spoke with a doctor friend of mine, who called a hematologist friend of his, who stated that if the interventional radiologist was willing to come in on a weekend for surgery, I had better say yes; apparently they do not normally come in on weekends. I read up on the topic all I could, and then said let’s go through with the surgery. While it was a little uncomfortable, as I had a catheter in the vein in my calf for 24 hours and could not move, it was well worth it! The procedure cleared up almost all of the clots, and they inserted an inferior vena cava (IVC) filter to keep any remaining clots from getting to my lungs and causing a pulmonary embolism (PE).
I had no idea that I could get a blood clot from having a sprained ankle. I guess if I had gone to the doctor for a two week checkup, it may have been caught sooner. Nonetheless, within a week after being released from the hospital, I was walking on the treadmill; albeit at a much slower pace than I am used to. I had read on several internet sites that walking was the best thing for healing, and I am used to walking on the treadmill every morning. After 4 weeks, I was walking on the treadmill at the same speed as previous, and after 6 weeks I started playing tennis again. After 3 months, they removed the IVC filter. While I am now wearing a compression stocking on the one leg, and am on blood thinners, I am back to all the activities in which I engaged before DVT, and at the same level; not that I was any good before. Also, my leg is barely swollen. I feel so blessed that God was watching over me. I guess He has more work for me to do here.
CDC would like to thank Rick for sharing his personal story.
My name is Mary Campise and I would like to share my personal experience with blood clots, also known as deep vein thrombosis (DVT). I have been an avid runner and biker and enjoyed good health my entire life. However, just before my 48th birthday, I began to experience shortness of breath. I found that I couldn’t keep up running with my husband and friends. I began to struggle for breath just walking up stairs and finally decided to see a doctor. I was told that the shortness of breath could be the result of exercise-induced asthma or possibly an allergy. While I was trying to find an answer, my shortness of breath persisted.
Two weeks later I woke up to find that my left leg was twice the size of my right leg. My husband drove me straight to Texas Health Presbyterian Hospital of Dallas, where doctors told me that I had DVT. One thinks of a blood clot as being small. However, my sonogram showed a blockage that ran from my abdomen to my ankle and I was told that no blood was moving up or going down. In the hospital I also learned that I had a complication of DVT—pulmonary embolism (PE). A PE occurs when the clot breaks off and travels to the heart and lodges in the lung. Most concerning to me, I learned that a PE can be fatal if not treated in time.
While I was in the hospital, a CT scan was conducted and the pulmonologist described my lungs as “being showered in blood clots.” An interventional radiologist talked with me that evening and explained that I needed a thrombectomy, an emergency procedure in which blood clots are surgically removed. After I was made aware of the risks and the necessity of this surgery, my husband and best friend convinced me that I needed to proceed in order to regain normal use of my leg again. The very next morning I underwent a successful thrombectomy. I also had a special filter, called an inferior vena cava filter, inserted into that vein in order to prevent any more blood clots from moving into my lungs.
The best news for me was that when I came out of surgery my leg was once again normal in size and I could stand up on my legs with no problem! Doctors told me that it was very likely that my blood clot was caused by May-Thurner syndrome, a condition in which a vein on the left side is compressed by an artery on the right. I now take blood thinners, known also as anticoagulants, to manage my condition.
I am sharing my story because my experience with DVT is so similar to other people’s stories—mainly that I did not recognize a warning sign, which for me was unexplained shortness of breath. My advice for other people is simple: Be aware of your own body. If you experience a symptom such as unexplained shortness of breath, take this seriously and seek medical care immediately. Be your own advocate for your health and respond quickly to any symptoms that are not normal for you!
CDC would like to thank Mary for sharing this personal story.