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

Coping with Pulmonary Embolism

World Thrombosis Day was last October 13. I've been so busy I didn't notice that the 13th passed already. I am a survivor of two pulmonary embolisms. The first one was in 2018 which remained undetected for many months. I had to advocate for myself to get a second opinion since my first respiratory doctor just kept piling me with asthma meds. Several trips to the ER also did not catch the culprit. It came to a point I could barely walk at work. I could have died. 

The doctor at the clinic where I insisted to get a referral to a specialist laughed at me. He said I was just going to get the same diagnosis of asthma. I knew though something was terribly wrong. I could barely do any of my regular activities. Because I was lead to believe it was asthma I'd sleep with an air filter beside me. I'd sleep sitting upright. It took a week of tests before my new doctor figured it out. He originally thought it was COPD. After several tests they saw I had a massive blood clot in my left lung. 

Investigations to find out the cause followed after finding the clot. It wasn't genetic. It wasn't caused by a DVT. Months later I ended up with an interventional radiologist who declared I had May Thurner Syndrome. He recommended a stent, but my cardiovascular surgeon vetoed it. I was able to resume my activities, albeit a bit slower, but I easily got exhausted. I was in fighting mode though and got better with physiotherapy. 

At my ICU bed 2 days after I was transferred from the ward.

I was supposed to go off blood thinners by December 2020. My doctor transitioned me from Xarelto to Plavix. A week later after I started I was warded again. I went through CT scans, but the radiologist said they only saw residual clots (meaning it was the old clot). Two weeks later I was warded again and my respiratory doctor instinctively had me tested and saw I had multiple new clots. 

The second clot in January 2021 proved to be too much for my body. I went through numerous tests again - blood tests, leg scans, venogram, VQ scan, cardiac catheterization, two biopsies and even more blood tests - to figure out what the cause of my clots were (you need to know so you can prevent it from happening again). Oh did I mention I was warded again ten days after discharge? 

Finally stable, October 2021.

Coping with pulmonary embolism is a huge struggle. It drains you physically and mentally. In the past year I've had to visit a doctor every week. I am lucky to have the support of my family and close friends. It is not easy to understand what I've been through, but I am a survivor. The disease has taken away a lot from me, but I'm happy that I found the real me again and my faith is stronger than ever. 

Here's a shortlist how I coped:

1. Faith, lots of prayers and prayers from family and friends

2. Supportive family and friends, I now know who really loves me

3. Good doctors, nurses, medtechs and my amazing physiotherapist 

4. It was also helpful to be part of the Pulmonary Embolism support group (it also helps when you're feeling better to help others who just found out they've had a PE)

5. Writing everyday has also helped me. My doctor insisted I keep myself busy so I don't deteriorate. Early this year typing on a keyboard was the only thing I could do. I struggled with brain fog, but it started clearing up when my medicine dosage was adjusted. 

The most important thing I've learned through is the importance of advocating for yourself. Only you know your body the best. The cause of my clots will remain a mystery (multi discipline doctors have investigated to no avail). It's okay not to know, what's important is I'm still alive and I'm finally stable enough to go back home. 

Bottomless thank yous and appreciation from my doctors, the amazing nurses and medtechs and other health workers who have been taking care of me. For my family and friends, thank you for loving me, praying for me and being there through this. 

Feel free to ask any questions by leaving a comment below or you can drop me a message through my FB page or YouTube channel. 

Happy weekend everyone!

CB////*Yr2/188 #StuckAtHomeDay/Yr2/209 #NewG260 #Home18 #Xmas70 #StayHome #BeKind

March is Blood Clot Awareness Month

The most common causes of clotting are: deep vein thrombosis (DVT), use of birth control pills, blood disorders, your genes, long airplane rides, smoking, too much sitting, obesity, COVID19, being immobile etc.*. If the clot breaks away it can cause pulmonary embolism (PE). The symptoms of this illness is similar to many other diseases. There may be shortness of breath, chest pain, fast heartbeat, lightheadedness and many others. 

I suffered for more than 7 months before I was diagnosed with pulmonary embolism. My original respiratory doctor thought it was just severe asthma. The huge clot in my lungs was found when I went for a second opinion. That was my first PE. Last January my doctor followed his gut and had me tested. They found a couple of clots in my left lung. The second bout of PE hit me harder even though the clots were smaller. My doctors do not know the cause of my clots. 

The newest addition to the causes of clotting is COVID19. The coronavirus increases the ability of your blood to clot (source). There are two things that could help avoid clotting: keep on moving and drink lots of water. I haven't been able to do my evening walks the last few weeks so I try to walk around at home. I sometimes wear compression socks too. 

Acute pulmonary embolism has a mortality rate of up to 30%. Your best advocate is yourself. I had to insist on the second opinion because the GP I went to just brushed off my complaints. If took a few more weeks before I saw my new (current) respiratory doctor. He has seen me through two PEs and is guiding me through my recovery. 

People who have PE need a lot of support.There are a lot of bad days when you can barely do anything. There are also nights when you can't sleep. With love, faith and hardwork we can get better. Sometimes it just takes awhile. 

"The more you worry, the more you hurry to the cemetery." - Fr. Jerry Orbos, SVD. So don't worry and keep the faith. 

CB///337 #StuckAtHomeDay/368 #StayHome #BeKind   

*Fuller list of causes are available here.