Wednesday, September 20, 2023

My 5th Clotiversary

Commemorated my 5th clotiversary the other day. Sweetie asked me, "What is a clotiversary and why are you celebrating it?" I explained to him that clotiversary is the anniversary date when your blood clot was discovered. Why is it important? It's important because it's the date you survived an illness that has up to 30% mortality rate. 

Patients who have had pulmonary embolism normally commemorate the date because we are grateful to be alive. Many do not and find out when it's too late. I had a huge clot in my left lung. It was misdiagnosed for a year that's why it grew so big. I had to fight to get a second opinion. A GP scoffed at me and said that I was just going to get the same diagnosis, asthma. I wouldn't be here today if I did not insist on getting a second opinion. 

Twenty eight months later I had a second PE. It was caught early, but it affected my right lung. By that time the clot on my left lung hadn't dissolved yet. My doctor couldn't give me a higher dosage of meds because I kept bleeding. I had a harder time recovering from the second one. In fact, I never did and we went for stability. That's why my doctors in Singapore advised me to retire. 

Since I've just been coasting along and my tests and scans aren't any better than those I had in Singapore, my doctor recommended me to do pulmonary rehab. We hope to strengthen parts of my lungs that are still healthy. I am still lucky that I don't need supplemental oxygen. I can get by as long as the air quality is good. I have an oxygen concentrator which I use when my oxygen saturation goes very low. 

Finally started my first pulmo rehab today. It took awhile to schedule. The center wanted me to do a pulmonary function test first. My doctor made it optional. I didn't get to do it because I couldn't last the night without my regular maintenance meds. I had asthma and had to take meds, so had to cancel the PFT. My doctor anyway said I didn't really need to do it since my last PFT shows my lungs do need rehab. 

First day exercises were actually very light. Just breathing exercises with some stretching. I was super tired though after the session and had to lie down the rest of the day, haha. I had grand plans to make homemade pancakes. Of course, that didn't happen, so many will attempt again later this week. My goal is to have more energy and stamina. I told the physiotherapist that I eventually want to be able to ride a bike again (originally wanted to run a marathon post OHS, haha). 

Let's work it, work it and pray. 

#BeKind #StaySafe

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