Misdiagnosed
The Older I Get, the Scarier it Gets: Brenda’s Story
In 1983, I began experiencing pain in my side, shortness of breath and coughing up blood. At the ER, I was diagnosed with pleurisy, which is inflammation of the tissues that line the lungs and chest cavity. I was only 17 years old. Two weeks later, I began having pain in my left groin and…
I Was Dismissed Twice at the ER: Erin’s Story
On November 4, 2021, at the age of 27, I started experiencing pain in my neck that shot up through my head. I figured it was just pulled a muscle, but for the next three days the pain got worse. On November 8, four days after the pain started, I decided to go to urgent…
This Experience Changed My Entire Life: Kim’s Story
In September 2015, I was sitting in the ICU wondering how I had gotten there. Flash back to six months prior, I had severe depression and I weighed close to 300 pounds. I was also training for a 160-mile bike ride from Miami to Key West. During my training for this ride, I started experiencing…
This Needed More than a Tylenol Prescription: Ashley’s Story
At 31 weeks pregnant, I was getting ready for the arrival of my baby when I started experiencing extreme pain in my left leg. I remember going to my baby shower and barely being able to walk. This was very concerning, so after the baby shower, I called my OB/GYN and explained the symptoms I…
A Combination of Missed Risk Factors: Gina’s Story
In 2017, at 21 years old, I was undergoing my third surgery on my left knee after I had torn my ACL and meniscus playing college basketball. I was back on the court a few short weeks later, but felt that my hamstring was unusually tight. This didn’t seem right to me, so I decided…
Knowledge is Power: Sheila’s Story
On September 5, 2021 I woke up in the middle of the night with a cramping pain in my right leg, which didn’t seem like anything serious at the time. I woke up the next morning and carried out my usual routine, but the pain became unbearable so I decided to see a doctor. The…
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, …
Know Your Blood Clot Risk Factors: Nicole’s Story
In May of 2021, I dislocated my ankle. I was also on hormonal birth control. After the ankle injury, I was told to go home and rest, and not to bear weight on my ankle for 4-6 weeks. After about a week and a half, I had intense pain and cramping in the calf of…
I Felt Like No One Was Listening to Me: Natalie’s Story
A few days after my fourth daughter was born, I went to the emergency room for terrible leg pain. They did an ultrasound and assured me I did not have any blood clots. I went back again for a second time because I was certain I had a blood clot. Again, they sent me home…
The Emotional Toll Has Been Challenging: Jenna’s Story
In September 2020, at the age of 24 and in good health, one week away from graduating with my master’s degree, I nearly lost my life. I woke up one day with a headache slightly worse than normal. Over a week, things got worse until I was in more pain than I had ever experienced…
