The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including the patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact email@example.com with questions about this matter.
My name is Colleen Meredith and my first experience with blood clots occurred my second year of college after having a lobectomy (a surgical procedure that removes a lobe of one of the lungs). I was on my university’s soccer team for my university, and I felt like I was always ill to the point where getting out of bed was a battle. When I was running on the soccer field, I constantly felt like my right lung wasn’t expanding and there were waves of excruciating pains in my abdomen that would make sleeping and eating absolutely impossible. My doctor diagnosed me with endometriosis (abnormal growth of cells that line the uterus, in a location outside the uterus) and I had to have surgery.
After having surgery, I was put on Quasence – an extended-cycle birth control pill that allowed me to have only four menstrual cycles a year. This was prescribed to help with the pains from the endometriosis. Even with the endometriosis treatments, I was usually in terrible discomfort and short of breath to the point where the pain in my chest went from the front to the very back making bending and twisting so awful.
Because I complained about being short of breath, my doctor ordered a chest x-ray.The chest x-ray showed a mass (an abnormal growth) about an inch in diameter in my right lung. I dropped out of college and quit soccer the second semester of my sophomore year. I had been playing soccer for 17 years of my life and that and my grades were the most important things to me. Losing both of those at the same time was absolutely devastating to a 20 year old me.
I moved to Arizona to be with my mom and deal with the mass. The first thing they did when I got back to Arizona was to try to do a biopsy (test some cells of the mass for cancer) of the mass in my lung. However, my lung collapsed and they were unable to obtain a sample. Because of the density and size of the mass, my surgeon decided to go in and remove the mass anyway; it turned out I had Valley Fever (a fungal infection that enters the body through the lungs, gives a person symptoms similar to a cold or flu, and affects many people in Arizona).
After a week in the hospital I was allowed to go home; it wasn’t even two days later that the pain from taking a breath became so awful that I was seeing spots. Then, my mom and I noticed that my left leg had turned an awful shade of purple and we sped to the emergency room.
I was diagnosed with bilateral pulmonary embolisms (lung clot or PE) and a deep vein thrombosis (leg clot or DVT) in my left leg. They kept me in the hospital for a week and did multiple surgeries to remove the clot in my leg and insert an inferior vena cava filter or IVC. (An IVC filter is a medical device inserted into the major vein that brings blood from the lower part of the body into the heart. This is done to prevent blood clots from traveling to the lungs to form another pulmonary embolism (PE))
I was released from the hospital again and within a day, my leg had become worse. The second morning I was home, I woke up screaming. My mom was at work and I called her but all I could do was cry. She called an ambulance and by the time she returned home I was being loaded up and taken back to the emergency room for more Heparin, Lovenox, Coumadin, and surgery.
The IVC filter kept the clot from going to vena cava; however, the clot grew all the way down my leg from my hip to my ankle. Since then, I have had three more DVT’s in my left leg. My medical history—Valley Fever, bilateral pulmonary emboli, and pneumonia when I was younger—has caused right ventricular dysfunction in my heart. I have to have another endometriosis surgery in two months because the only treatment for endometriosis is hormone therapy; I cannot take the hormones anymore because they cause blood clots so the lesions keep growing.
I am very, very lucky to be here writing this today. I have two more semesters of college and I am dating the love of my life. He has sat with me through every single step of this awfulness. I appreciate my family more than I ever have and I love life with a passion that I have never felt before.
I have Factor V Leiden – which I didn’t know about until my first clot—endometriosis, fibromyalgia, and epilepsy. In spite of all of these diagnoses, I am probably the most positive person in the world. The best advice I can give someone who is going through any of this is to not become your illness. It’s important to not forget who you are throughout all of this craziness.
Take Home Messages:
- Blood clots don’t discriminate; twenty year olds get them
- Hormonal birth control increases your risk of blood clots – especially if you have a genetic clotting disorder like Factor V Leiden
- If your leg turns purple or bluish and is swollen, seek immediate medical attention
- If your leg turns colors and you have chest pains and difficulty breathing, go to an emergency room or call 911
- Major surgery such as lung surgery increases your risk of blood clots
- Surviving a PE is a life-changing experience
- A PE crisis can turn you into an advocate for DVT/PE awareness
- There is life after blood clots; enjoy it everyday
- Do not become your illness; don’t forget who you are.