Thursday, September 17, 2020

It's My Second Clotiversary

"If untreated, acute PE is associated with a significant mortality rate (as high as 30%), whereas the death rate of diagnosed and treated PE is 8%. Up to 10% of acute PE patients die suddenly. Two of three patients succumbing to PE die within 2 h after presentation." (Source

I am posting my clot story to drive more awareness about the risks of having this disease. My doctors never thought this would happen to me.

Two years ago after multiple tests my doctor told me what was ailing me. I had a huge blood clot in my lungs. No one suspected it because my open heart surgery was successful and I had resumed regular activities with heavy traveling.

Enroute to the hospital for a test.

I suspected something was terribly wrong. There were nights I could barely breathe and I would sleep sitting up. I thought it was just really bad asthma. I would even put the air filter right beside my bed. I suffered through it for more than a year. I was already seeing another doctor for over a year when I felt the medications he was giving me wasn't help. I was also in and out of the ER every other month.

I honestly had to fight for myself. Because I wasn't getting well I went to a clinic to request for a referral to see a respiratory doctor. The doctor in the clinic told me that I'd probably get the same diagnosis -- acid reflux that was causing asthma. I knew something was wrong so I insisted. At that time it would take me 15 minutes to walk, take an elevator to the next floor and reach another meeting room at the office. It would usually just take 2-3 minutes to do that if you can breathe properly.

It took a few weeks before I got an appointment with my new doctor. When I saw him he ordered for tests to see if I had COPD. I had a flurry of blood tests, allergy test, xray and a CT pulmonary angiogram. The CT clearly showed I had a huge blood clot in my lungs. After that my doctor had me do another series of tests to determine what caused the blood clot. It was undertermined and I didn't have a DVT. It was only ten months later when the cause was determined (May Thurner Syndrome, read about it here).

I'm grateful I was able to visit Rome, but I should have probably taken a break to recover first. 

My doctor was meticulous and knew exactly how to get me better. He even allowed me to go to Rome three weeks after diagnosis. It was a bad idea, but I survived and after that my doctor because stricter with grounding me when needed. It was my urologist who told me I am very blessed to have lived through it.

2nd anniv check up.
Recovering from pulmonary embolism does not have a set timeline. The clot is gone, but recovery is very slow. I rarely go out because I don't have the same energy as normal people. I read that pulmonary embolism affects both your lungs and heart, so it really takes time to recover. I joined a group where patients share their experiences and no one patient is the same.

To be honest, heart surgery was the most painful thing I've been through, but I was much better in about six months. My lifestyle changed a lot, but I still got to do a lot of things. PE and May Thurner Syndrome is a different monster. It's been two years and the effect has been more severe than undergoing heart surgery. To my family and friends who have been supporting me the last few years, thank you. The love, care and understanding means a lot to me.

CB//163 #StuckAtHomeDay/193 #WFH111 #StayHome #BeKind 

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