It's Complicated

I was told after heart surgery I am one in one hundred thousand. It was funny because nurses, pre-med students flocked to my room to have a look at me. I didn't mind since I thought it could help someone they treat in the future. I even told my second opinion doctor that I may decide to donate my body to science once I pass. Seriously, yes. My family though would probably disagree. 

After PT yesterday. Must get stronger. 

I'm feeling a little bit sad today. I just read a summary my second opinion doctor wrote about my condition. She mentioned the term complicated a couple of times in the report. I've always known that my body is different from everyone else. It's an intricate system (don't worry I won't bore you with the details). My doctors told me I've been this way since I was born and it's never really bothered me. And I'm just grateful I'm still alive and can do to contribute. 

In a lot of ways I know I won't be me without being different. My doctor told me I'd probably be very different if I didn't have those tiny cavernomas in my brain. Sometimes though I cannot help but think, would my life be different if I had a normal body? If I did I would probably have more adventures. Maybe I'd be an extrovert. Maybe I'd be more friendly, more outgoing. I'd have more energy and be able to do marathons, climb mountains, hike, bike like crazy. 

But that's not me. God gave me this body, challenges, and mission. I will not have it any other way. I am thankful and grateful for all my family, friends and colleagues who understand that I am not physically strong like everyone else. They know that despite all the challenges I face physically that I give what I can. 

I thought I'd write this for all other people who are like me. Especially for those persons who have bodies that science don't completely understand yet. We are all created different after all. So just live the best way you can. Just love and live happy. 

#CB//230 #StuckAtHomeDay/260 #WFH154 #StayHome #BeKind 

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 

Living with MTS

Last week I blogged about that time I had pulmonary embolism. My long-time doctors were baffled about it. I was super lucky and blessed that the doctor I was referred to found out what was ailing me. It took two weeks of tests before I was properly diagnosed. It was a huge blood clot that grew over a year. I had been doing a lot of overnight flights that year and that probably made things worse.

When you are diagnosed with pulmonary embolism it's important to know whether it's provoked or unprovoked (the cause). This was undetermined after doing so many tests. I had just finished my medications 9 months later when weird symptoms started showing up. I was having frequent headaches, blurring of vision for a few weeks.

It was another series of ER visits, new doctors until I ended up with an interventional radiologist. I had an angiogram and venogram and it was found I have May Thurner Syndrome. It means I have an artery and vein pushing against each other. This is what caused the clots that eventually found its way up to my lungs.

I probably have it for a long time because my cardiologist through many years always wondered why my calves are always swollen. I would usually tell him I just have thunder thighs and it runs in the family! To fix MTS one is given the option to have a stent placed in the vein. I was super iffy about it and got the second opinion of my cardiovascular surgeon. He did two open heart surgeries on me and so I sought his opinion. He said I shouldn't do it and explained that one should only do these kinds of procedures if your life depended on it and whether it would improve your quality of life.

Pain goes hand in hand with MTS. Swelling is an everyday thing and I have other medical conditions that complicate matters. To this day I follow my allergologist's advise, "Accept things early and be flexible". I believe I will get over this. My doctor reduced my medication already. It's hard because there are good days and bad days. My goal is to go back to the days when I didn't have daily medication (my Mom is 85 and doesn't have any meds and she had medical conditions also in the past).

Here's what I'm doing to work towards my goal -

(1) Physiotherapy
(2) Exercise
(3) Staying positive (meditate!)
(4) Eating properly
(5) Pray