In 2021, I had a routine laparoscopy procedure and came out of the general anesthetic coughing up blood. I was pale, sweaty, low on oxygen, and experiencing a fast heart rate and chest pains.
After being told by the surgeon, “We were rough with the tube we put down your throat,” I was discharged like that. I ended up with pneumonia within a day of the surgery. For two years, I was misdiagnosed as having sinus tachycardia, a type of fast heartbeat.
“Lots of women your age get tachycardia for no reason, and there’s nothing we can do,” I was told. “The worst that will happen is you’ll pass out.”
I had persistent and worsening symptoms of chest pains, breathlessness, and tachycardia that was blamed on anxiety, chronic fatigue, and my weight. I think my young age played a part in how health professionals viewed my symptoms.
There were multiple occasions where opportunities were missed by health professionals to properly investigate my symptoms. Now that I’m educated on the symptoms of pulmonary emboli, I can look back at my symptoms and I can say that every single symptom was there.
After another round of pneumonia that lasted two months from December 2022 to February 2023, my symptoms were worse than ever. I was re-referred to a cardiologist and was told I’d have to wait 63 weeks to see a cardiologist with the National Health Service (the publicly funded healthcare system in England.)
Only after my mum offered to pay for me to go to a private cardiologist in early 2023 was I taken seriously. A VQ (ventilation perfusion) scan was organized for me and I was diagnosed with chronic pulmonary thromboembolism / chronic multiple pulmonary emboli. I still remember what it was like when I was told the news.
In a somber tone, I was told, “I am so sorry. It’s come back positive, and you need to start blood thinners immediately to improve your life expectancy.” Not words you expect to hear at 25 years old.
I’ve been consumed by fear, anxiety, and feelings of loneliness, isolation, and despair. I’ve been angry, frustrated and confused.
But at least now, I have answers.
I’m currently awaiting blood test results to find out if I have lupus anticoagulant / antiphospholipid syndrome.
I feel like my youth and confidence have been taken away. I only started experiencing nightlife a couple of years ago, and it’s been difficult adapting to not being able to drink anymore without worrying. I’ve got to be a lot more careful now, which is hard because I’m so clumsy due to my autism spectrum disorder and attention deficit hyperactivity disorder.
This experience has made me realize how fragile we really are, yet at the same time, how strong we really are. I also realized that death is not within our control, and you need to do the things you want to do while you can.
My advice to others is to take advantage of the support available and reach out to others. These things can make you feel so isolated and alone, but I promise you’re not alone. Take it one day at a time because thinking about the future can be scary. Live for now.
Resources
Facebook Support Group
Psychological Impact of Blood Clots
How is a PE Diagnosed?
