Hello everyone, my name is Rishabh. I’m a university student based in Singapore. When I was 20, I was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), and today I’m going to share my experiences and explain how I was affected mentally and how I coped over the months.
Before being diagnosed with this condition, I was very fit and healthy. I was especially passionate about running. Unfortunately, I experienced a fast drop in stamina that quickly turned into fainting spells—syncope. Before I knew it, I was practically bedridden. I couldn’t climb stairs without passing out, which was extremely distressing for both my family and me.
Thankfully, I was cured within several months after undergoing nine Balloon Pulmonary Angioplasty (BPA) procedures—four in Singapore and five in Japan—under Dr. Matsubara, one of the pioneers in the field. It’s been over two years since my last one. I’m now fully fit. I regularly play football, something I couldn’t have imagined doing back then. I’m finishing my degree and ready to start my career in Singapore soon.
Here’s a brief outline of what I’ll be discussing today. I’ll start by touching on the lead-up to my diagnosis, then share what life was like living with Chronic Thromboembolic Pulmonary Hypertension, talk about my life after being cured, and finish with some key takeaways.
I began my mandatory army service in Singapore in 2020, shortly after turning 18. I led a very active lifestyle and had no issues with exertion until near the end of my service, when I noticed a slight dip in stamina. I didn’t think much of it at first, until I began experiencing near-fainting episodes in 2022.
About a month after finishing my service, I fainted while running with friends in the rain. It was terrifying. My parents and I were extremely worried. We rushed to see a pulmonologist, thinking it was a lung issue. I was misdiagnosed with asthma and put on an inhaler, which is a common misdiagnosis of Chronic Thromboembolic Pulmonary Hypertension. Unfortunately, my condition worsened. Climbing stairs became a struggle, and even walking moderate distances became difficult.
We went back to the doctor, who suspected a cardiovascular issue and referred us to a cardiologist. After several tests, including a right heart study, I was diagnosed with Chronic Thromboembolic Pulmonary Hypertension. This was, of course, devastating. My parents and I frantically tried to understand the condition and our options.
My coping mechanism was to keep myself busy, which I did thanks to the support of my friends and family. My parents coped in different ways—my dad especially found solace in science. He spent sleepless nights researching pulmonary hypertension, trying to find answers and comfort in understanding.
Following my diagnosis, we were told that the standard protocol was to begin blood thinners and monitor progress for three months before considering surgery. Even with a plan, those three months were incredibly difficult. There was virtually no improvement, physically or emotionally, and I found it hard to stay optimistic. It felt like I was being stripped of life’s basic joys.
I briefly sought psychiatric help, which was extremely beneficial. There can be stigma around mental health, but I didn’t let that stop me—it truly helped.
In November, two months after diagnosis, my condition worsened, prompting my doctors to accelerate surgical intervention. We were presented with two options: Balloon Pulmonary Angioplasty or Pulmonary Endarterectomy (PEA). After much research and discussion with doctors, my family and I opted for Balloon Pulmonary Angioplasty. We didn’t feel that the Pulmonary Endarterectomy offered superior outcomes, and we were hesitant about its highly invasive nature.
I had four Balloon Pulmonary Angioplasty rounds in Singapore between November and January, but only saw slight improvements. Balloon Pulmonary Angioplasty is a complex procedure that requires high expertise, and Singapore has a small patient base, which limits experience. My father reached out to Dr. Matsubara in Japan, a pioneer with over 4,000 procedures. Thankfully, he replied immediately, and by late February, we were in Okayama.
That period between January and February was especially dark. My symptoms persisted. I developed Ortner’s syndrome, caused by dilation of the heart pressing on a nerve in the voice box. I had a very hoarse voice and couldn’t shout. I also lost significant weight—around 15 kilograms.
Despite this, I tried to carry on with life. I stayed in university, continued my studies, and met with friends when I could. Juggling university with such a condition was difficult, but staying engaged was a coping mechanism. Small things like going to coffee shops or libraries helped me hold onto a sense of normalcy.
Thankfully, this period of uncertainty was short-lived. After my first two Balloon Pulmonary Angioplasty sessions in Okayama, I noticed significant improvements. I could climb stairs, walk long distances, even run a few meters to catch a bus. My dad described seeing me walk around Osaka without issues as the happiest moment of his life.
We returned to Japan in May after my final exams for another set of Balloon Pulmonary Angioplasty. I had three more over eight days between February and May. After that, I was fully cured.
I’m now fit and healthy with no constraints. The only medication I take is a blood thinner, which I’ll be on for life, but otherwise I lead a perfectly normal life. I play football, go to the gym, go on runs, and even spent a semester on exchange at the University of Pennsylvania. I’m now back in Singapore and ready to start my final year of university.
I’m eternally grateful to Dr. Matsubara for giving me my life back, and to my parents—my rocks. My dad especially bore immense stress, doing research night after night, which ultimately led us to Dr. Matsubara. I owe my life and happiness to them.
Here are some key takeaways. I was diagnosed with Chronic Thromboembolic Pulmonary Hypertension during my first year of college, which was devastating. But I kept myself busy, worked around my constraints, and tried to live as normal a life as I could. I didn’t give up on my studies. I got out of the house when I could, even just to a coffee shop, library, or restaurant. I invited friends over. I held on to every bit of normal life I had.
I wasn’t afraid to seek psychiatric help, which helped me stay positive despite rapid deterioration. My family and I also researched thoroughly, which I think is crucial.
It’s important to find the right specialist. Chronic Thromboembolic Pulmonary Hypertension is niche, so finding a doctor who understands the condition is vital. It’s also important to weigh the pros and cons of Balloon Pulmonary Angioplasty and Pulmonary Endarterectomy to make an informed decision. Of course, doctors’ opinions matter, but ultimately, it’s your decision.
Most importantly, I was extremely lucky to have the best support system. I relied on them heavily. I spoke openly to my friends and family about my mental health, and they were always there. I’ll forever be grateful.
Thank you so much for listening. I hope this was helpful or somewhat inspiring. If you’re going through Chronic Thromboembolic Pulmonary Hypertension or any medical condition—or supporting someone who is—stay strong. Never give up. And if you have any questions, please don’t hesitate to reach out. Thank you.