On June 16, 2022, I woke up early to get ready for a trip to a large car show when I noticed a sharp pain in my shoulder. Throughout the three-hour drive, I started to experience pain in my back when I breathed which lasted throughout the day.
I did not experience symptoms the following day. However, throughout that night and into the 18th of June, my symptoms got worse. I went to urgent care for pain with breathing, laughing, coughing, and movement. I was given an X-ray and was told I likely pulled a muscle and I needed to eat more to keep my iron levels stable as low iron can contribute to shortness of breath.
A month later, I’m dealing with weakness and severe loss of breath. I thought it was a symptom of my ulcerative colitis flare, so I asked my doctor for IV fluids. The next day, I was in a store on the phone with my husband when I collapsed. I woke up and couldn’t breathe. An ambulance was called, and I spent eight hours in the ER.
I got a CT scan and the doctor told me I was being flown to a larger hospital because I had a large saddle PE with multiple bilateral PEs. I underwent an emergency thrombectomy and spent five days in the cardiothoracic ICU.
Six months of treatment go by and I’m still experiencing symptoms. I have additional clots in my lungs, but my care team is unable to tell me if they are new or with the original episode. I was eventually referred to the Mayo Clinic where I underwent a multitude of other tests and got the diagnosis of chronic thromboembolic disease (CTED). My risk factors included estrogen-based birth control and ulcerative colitis.
Two and a half years later, I am “healthy” but continue to experience symptoms of back and chest pain and occasional shortness of breath. I am a lifer on anticoagulants. I continue to deal with and persevere through medical PTSD with the support of my husband, family, and friends.
My advice to others is to advocate for yourself. If your gut tells you something is wrong, continue to seek second opinions until someone is willing to help you find answers.
Resources
Living Your Best Life on Blood Thinners
Signs and Symptoms
Interventional Therapies
