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I Had Clots in Both Legs While Running Endurance Races: Ernie’s Story
In the summer of 2022, I started having shortness of breath but thought nothing of it. I had just run an 18-mile trail race the Saturday before, and it can take a few days for your body to feel normal again. A little coughing and sore throat from running in the dirt for four hours…
‘Am I Going to Die?’: Christopher’s Story
I had an injury to my forearm in June 2022. Less than a week later, I started getting severe chest pains. I was taken to the hospital with c-reactive protein test (CRP) markers of 93 and was sent home with antibiotics. A week later, I experienced the same pain, but worse. This time a CT…
The EMTs Had to Get Me Off the Floor: Michael’s Story
One week before my diagnosis, I noticed I was getting weak. Not weakness from being tired, but unusually weak without cause (I thought). I also had a nagging cough and was constantly clearing my throat. I began to presume that I had caught the coronavirus, so I started doctoring myself. After a few days, I…
Make Sure to Move Around After Surgery: Jake’s Story
I had abdominal surgery in July 2020 and had a difficult recovery. I could barely move. On Sunday, October 18, 2020, I woke and showered. I was home alone — my wife was visiting her brother. While climbing the stairs back to our bedroom, I became extremely short of breath. Despite that, I made my…
Nurses Say I’m a Miracle: Marcus’ Story
I am a 39-year-old Native American. I have had 23 pulmonary emboli (PE) and 31 incidents of deep vein thrombosis (DVT) starting at age 22, caused by the factor V Leiden mutation. I also have congenital protein C and S deficiencies. Nurses say I’m a miracle and call me a medical anomaly. Doctors ask…
The Symptoms May Be Subtle: Bill’s Story
Everything felt normal, but I was left gasping after walking up a hill carrying a bucket of water. Something was wrong. I was subtly winded after golfing and climbing stairs, but I paid no attention. I thought it could be allergies. The next day, walking up that same hill with the bucket, I was out…
I Had Clots in My Lungs the Size of Baseballs: Demetrius’ Story
I was first diagnosed with pulmonary emboli (PE), or blood clots in my lungs, on October 23, 2017. Doctors told me it was a miracle that I did not go into cardiac arrest and die because the clots in both lungs were the size of baseballs. I was rushed into emergency surgery to remove the…
It Could Have Been Prevented: Andrea’s Story
On November 7, 2020, I received a phone call from my stepson Conner. I could tell by the fear in his voice that something was terribly wrong. I remember his exact words, “Dad is conscious, but you need to meet us at the hospital now! Dad is in an ambulance they’re taking him to the…
A Nagging Cough and Shoulder Pain Were My First Symptoms: Mike’s Story
I had a nagging cough for a few days, which later became shoulder pain on Friday, March 18, 2022. I went to a local urgent care center to get checked, and the X-ray showed that I possibly had pneumonia. Despite antibiotics, my condition worsened over the weekend. By Tuesday, March 22, I had shortness of…
My Commitment to CTEPH Awareness: Harry’s Story
The Road to Diagnosis As far back as my teenage years, I had experienced chronic shortness of breath. This worsened in my twenties and thirties as new symptoms emerged, including occasional chest and arm pains and general exhaustion. Over the years I sought the opinions of countless doctors, leading to misdiagnosis after misdiagnosis, …