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 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.
I’ve always been active and healthy, and I was always involved in a lot of sports growing up. Now, as a 28-year-old woman, I’ve maintained a healthy lifestyle with proper nutrition as well as exercise. I have enjoyed running, high intensity interval training, and yoga for years now, and I am currently training for my first triathlon this summer. Given all of this, it’s surprising that just over a year ago, on March 18, 2016, I was in the emergency room (ER), where I was diagnosed with bilateral pulmonary emboli and pleural effusion.
It all started a few months prior to being in the ER. I experienced what I thought was intense heartburn that was radiating through my chest and upper back. It would come and go. I visited my family doctor, who prescribed me some strong antacids. They didn’t help, so I stopped using them. I was also randomly experiencing night sweats, which never happened to me before. My body is usually cold, and to wake up suddenly in the middle of the night soaked in sweat was extremely unusual for me. I explained this to my family doctor as well, and she attributed it to the birth control I was on, so she switched my prescription to a different birth control pill. Unfortunately, neither my supposed heartburn or night sweats improved.
A couple of days prior to ending up in the ER, I was experiencing a lot of trouble sleeping, as I couldn’t breathe when I laid on my back or side. It also hurt a lot, and I couldn’t get any relief while trying to lay down. I went to the emergency room in the middle of the night, instead of trying to sleep through the night again. I am lucky that I did, because I may not have made it through the night.
Once at the ER, they first ran an EKG, then they did a couple X-rays and blood work. The X-rays showed some fluid in my lungs and my d-Dimer blood work showed a risk for blood clots. The doctors decided to do a CT scan of my lungs, and they brought me and my mom into a room once they received the results. They told me I had multiple blood clots in both my lungs and pleural effusion in my left lung, or excess fluid in the pleural cavity outside the lung. They also checked both my legs for swelling from a DVT, but I hadn’t experienced any swelling at all.
I had to see a series of other doctors and specialists who checked me over, asked me questions, and gave me information pertaining to blood clots and pulmonary emboli. They told me that I could no longer be on birth control, and they prescribed me some pain killers and new oral blood thinners.
Once home from the hospital, I was still in a lot of pain and had trouble breathing. I was told that it would take some time for this to go away, and just to take it easy and rest. The problem was, it was hard to lay down, because I couldn’t breathe laying down. It was a lot of uncomfortable sleeping while sitting up for the first few days. Previously, I was someone who worked out almost every day, and now I could barely walk around the block in my neighborhood without having trouble breathing. It took a couple more X-rays at my doctor’s office and a few more weeks before the fluid in my lung started to go down. I was told not to exercise for six to eight weeks, so a couple of months later, I finally began trying to exercise again.
I was on blood thinners for six months and after being off blood thinners for a couple months, my hematologist recommended getting tested for factor V Leiden, a blood clotting disorder. Unfortunately, it was more bad news. She let me know that I tested positive for heterozygous factor V Leiden. Now I have a medical ID bracelet, compression socks to wear during long car and plane trips, and I will have to be on blood thinners for life if I ever clot again. If I ever wish to get pregnant, I will need to have daily injections to prevent blood clots during pregnancy.
Despite all this, I’ve slowly regained my strength, and I am now in the best shape of my life as I train for my upcoming triathlon. Swimming, biking, running, and doing weight training are regular parts of my week now. My two sisters and both parents are getting tested for factor V Leiden as well, and we are currently waiting on the results of their tests.
My advice to others is listen to your body as no one knows it better than you. If you don’t trust your doctor’s diagnosis, insist they keep checking, or seek another opinion. It’s better to be safe than sorry, because blood clots can be fatal, and you often don’t know you have them before it’s too late.