My Story

Real Stories from People living with DVT

Crystal’s Story

My first blood clot occurred in the late 1980s, after I gave birth to my first child at the age of 19. I was home for four to five days after the delivery, and I started experiencing pain that radiated from my lower back down to my left leg. I thought that it was related to childbirth, so I didn’t do anything until the next day when my leg swelled tremendously. At that point I went to the hospital, where I was diagnosed with a blood clot in my left leg after having a Doppler study (an ultrasound test that looks at blood flow through blood vessels). I was put on anticoagulants (blood thinning medication) and hospitalized for 8 days. I was on a blood thinner for about six months, and after that my life returned to normal. Although my lower left leg remained larger than my lower right leg, I was very athletic and even played basketball in college. I was prescribed birth control pills after the delivery of my first child, but luckily after about a month of taking them, I read the fine print in the packaging and realized that they might increase my risk for another clot. I immediately stopped taking my birth control pills.

By 2010, my physical activity had slowed down. I was not as active as I had been, and gained weight. I joined a boot camp exercise program for one hour every day, and started eating healthier foods. I did a log of jogging and running. After running one day, I felt excruciating pain in my leg. The next day it became very swollen, and I had difficulty walking. I was exhausted, and became out of breath while completing the simplest tasks. I went to the hospital, where I was diagnosed with three blood clots in my left leg. I hadn’t traveled, and I was physically active, so my doctors had a difficult time identifying the cause of my clots. I was hospitalized for five to six days, and had to take a month off of work to recover. I saw a hematologist (a doctor who specializes in blood disorders), and was put on a consistent regimen of blood thinners. I now have post thrombotic syndrome (PTS), which causes edema (fluid retention with swelling) in my leg. The PTS has really impacted my life. I can no longer walk up hills, wear high heels, or wear anything that elevates my back heel. I cannot be physically active in the ways that I used to, like running and Zumba. I started speed walking, but experienced severe pain and swelling. To stay healthy, I hope to try biking and make improvements in my diet.

I am currently seeing a hematologist to try to identify if there are genetic factors causing my clots. My grandfather had a blood clot, and another family member recently passed away at the age of 33 due to a blood clot. I encourage everyone who is reading my story to learn the signs and symptoms of blood clots, in order to catch them as early as possible. Blood clots are not a death sentence, and there are ways to work around them, but early detection is key. If you have been diagnosed with a blood clot, you should learn as much as possible about clots, so that you can feel empowered to advocate for yourself and feel confident about the care that you receive. It is important to surround yourself with a knowledgeable team of healthcare providers that you feel comfortable around and won’t blow you off when you have concerns. It is sometimes difficult to get answers about what causes blood clots, but if you are able to find good doctors who listen to you, they will work with you and do all that they can to ensure that you have a healthy life.

CDC would like to thank Crystal for sharing this personal story.

Natalia’s Story

July 20th, 2005 is a day I’ll never forget. I was a graduate student at UCLA, and it was the summer before my last year completing my PhD. I had an important presentation that day, which required me to squeeze five years of research into a 15-minute presentation for the funders of my research.

I was under a lot of academic pressure, and the day before my presentation, I received a ton of corrections for the presentation from my professor. I spent five hours sitting at my laptop in the lab, with no bathroom or food breaks, and practiced my presentation all evening before going to bed. When I woke up the next morning, I was experiencing pain in my right calf. I also had some bruising. I hadn’t exercised or fallen the day before, so I had no idea what it could be from, but I brushed it off because I had more important things to worry about, like my presentation. The pain was quite intense, and that morning I limped into the lab. One of my colleagues, who was a GI (gastrointestinal) doctor was there. He was very friendly and always making jokes, but when I told him about my leg and he observed my limping, his entire demeanor changed, and he became very serious. He suggested that I go to the student clinic immediately after my presentation.

I gave my presentation, and went to the clinic right after. By then, my leg had become swollen. When I was examined by the doctor at the clinic, I was sent immediately to the Emergency Room. When I arrived, around 6 p.m. that evening, I had an ultrasound and I was diagnosed with a deep vein thrombosis (a blood clot in the deep veins of the leg).

After my diagnosis, I had to inject myself with warfarin (a blood thinner) for a week, and I had tests run to check for a pulmonary embolism (a blood clot in the lung), which thankfully came back negative. My blood was tested, and no genetic predispositions (an increased likelihood of developing a particular disease based on a person’s genetic makeup) to blood clots were found. The doctors thought that my blood clot was caused by using birth control, combined with long periods of sitting, which can both increase the risk for developing a blood clot. I felt angry, because I wasn’t fully aware of the risks of birth control. I knew they had the potential to cause blood clots, but I thought because I was young, wasn’t a smoker, and didn’t have any of the other risk factors, I was okay. I doubt that most women really understand the risks of blood clots from use of birth control, and most pharmaceutical companies don’t seem to emphasize this very important point. People need to know about all of the risks for blood clots.

Since my diagnosis 10 years ago, I have learned a lot about blood clots and how to prevent them. I am very careful now to avoid getting another one. I am careful when I travel. I always select an aisle seat when booking flights, and make sure to get up and move around while traveling. When I became pregnant with my son, I was at high risk for blood clots because estrogen levels increase during pregnancy, and I had to take heparin (a blood thinning medication) every day to avoid developing another clot. Towards the end of my pregnancy, I had to give myself heparin injections twice a day.

If I could say one thing to those at high risk for blood clots, I would strongly encourage you to learn the signs and symptoms of a clot. I would never have seen a doctor if my colleague hadn’t urged me to, and things could’ve turned out very differently for me. I would also suggest making lifestyle changes to reduce your risk, when possible.

CDC would like to thank Natalia for sharing this personal story.

If you would like to share your personal story, please contact us at cdcinfo@cdc.gov