I was 29 years old when I was first diagnosed with blood clots. I dropped a bench on my right foot and about a week later, I started to feel pain in my right ankle and knee. I went to see my doctor about two weeks after the pain started, because it wasn’t going away, and I was concerned that it was a blood clot. There was no visible bruising. My doctor almost didn’t order a D-dimer test, because he said I was too young for a blood clot. I gave him some more details about a panic attack I had with no trigger, and he sent me in for further testing.
When I got my results back, my D-dimer was elevated. I went in for an ultrasound and a clot was found. It extended from my big toe to above my knee. They told me it was in the great saphenous vein, which is a superficial vein. I felt like I wasn’t taken very seriously because this vein is superficial, but I was put on a direct oral anticoagulant. I could hardly walk. About a month after being on an anticoagulant the doctor took me off, because my pain had subsided, and he believed the blood thinners were having adverse effects on me.
About two weeks later, I developed a horrible case of double pneumonia. It lasted for almost two months. November 14, 2018, I had such a hard time breathing that I almost collapsed. I thought it was because of the pneumonia. Two days later, I started coughing up bright red blood. I coughed blood for about a week, but I didn’t go in to the hospital, again because I attributed it to the pneumonia. I finally went in for a CT scan of my lungs November 29, 2018, and I was diagnosed with a blood clot in my left lung, or pulmonary embolism.
With that diagnosis, my greatest fear came true. I’m lucky to be alive, especially since I waited so long to get help. I have since learned that although the great saphenous vein does connect to the deep veins of the leg, in rare cases, it can pass from the superficial vein to the deep veins. My superficial clot turned into a DVT and then traveled to my lungs. I am now on another direct oral anticoagulant, and I am waiting to do genetic testing to see if I have any underlying risk factors. I have the MTHFR gene mutation, but I am not sure if I have elevated homocysteine levels – which could increase my blood clot risk – because I am still undergoing treatment. I was on an oral contraceptive, which may have contributed to my risk.
My journey isn’t over. I have a new clot in my left leg and I have been coughing up blood again. I got another CT scan, but the dye wasn’t optimal. They know I don’t have large clots, but they can’t be certain I don’t have smaller ones. While re-clotting on blood thinners is unusual, I am in a rare situation, and it happened to me. Next, I will need to see a specialist to further evaluate my situation. My most recent CT scan did find cysts on my lungs and a partially collapsed lung. I also got an EKG that showed abnormalities with my heart. I have an echocardiogram scheduled to see if my heart suffered any damage from the initial clot.
Reading other people’s stories has been invaluable to me. I know I’m not alone. I know that I was right in seeking help, even though I had pneumonia, and getting a CT scan. Live every day to the fullest. Be an advocate for yourself. If you feel something is wrong, please make sure the correct steps and precautions are taken. My outcome hasn’t been awesome, but it could have been a lot worse. Love fiercely. Be grateful. I feel joy in sharing with fellow survivors. Be an advocate for others. Raise awareness. You could save a life! Thoughts and prayers to you and yours.
MORE INFORMATION AND RESOURCES:
- Join our online peer support community to connect with other people who have experienced a blood clot.
- Read more about thrombophilia.
- Read more stories, or share your story.