Heart Transplant

Prequel

I was born in Singapore with Hypertrophic cardiomyopathy (HCM, or HOCM when obstructive) is a condition in which the heart becomes thickened without an obvious cause. It wasn't genetic. But it means that I was easily breathless, and had lots of trouble doing even the most minute stuff like climbing a flight of stairs. I battled this for 29 years, the pain, the medications.
Throughout my life, I've survived four major surgeries, one at 7 years old where doctors tried cutting away some heart muscles, two pace maker surgeries at 15 and 26, and this heart transplant surgery at 29.

The run up

On March 16 2023, my heart went into an abnormal rhythm for 39 days. I wasn't responding to the normal medications. We got in touch with the cardiologist at UPMC Presbyterian where I was currently being seen and he prescribed me stronger medications. After twice stronger medications did not work for a few weeks, I was asked to UPMC Presbyterian hospital on 24th April 2023 for a right heart catherization procedure. Unfortunately, I was immediately admitted to the Cardiac ICU because my heart was swelling too much and my pressures were through the roof. That meant I was on machines and drips for the heart to pump.

Preparing the worst

I might not have survived the ordeal. We filmed videos and wrote letters. And told my family to CELEBRATE LIFE. Wrote and signed my will and made necessary arrangements.
I was probably going to live on machines for the rest of my life. Or I would not survive the treatment.
However, one day, the doctors told me there is a last option: a heart transplant. The process will not be easy, but I was willing to try. With the papers signed, I went through a barrage of pre-transplant workup tests to test my suitability. These include liver biopsies, MRIs, CT scans etc. I was constantly in pain and tiredness but I pressed on. I also had to eat and bulk up despite not feeling up to it or having no appetite because post transplant I would not be able to eat for a week. And I had to be emotionally strong and have a 24/7 support structure to qualify for a transplant.

The Transplant

• May 11, 8pm: Received a call that there is a potential heart of good fit. Take it or leave it? Of course I'm taking it; I waited for this new lease of life.
• May 12, 4pm: Got a call to prepare for the transplant at 7pm
• May 12, 8pm: Wheeled into pre-operation preparation
• May 12, 10:30pm: Heart explanted successfully
• May 13, 4:30am: Heart transplanted successfully
• May 13, 5am: Out of surgery
• May 13, 7am: I woke up
• May 14, 1pm: successfully extubated (breathing tube removed). My vocal cords were paralyzed during the surgery.
• May 14, 3pm: Feeding tube inserted
• May 23, 10pm: Moved from ICU to general ward. Heart is now stable in body and time for rehab!
• May 31, 6pm: Discharged from general ward to home rehab
• Oct 8: Lots of uclers formed in my mouth and my butt area
• Dec 14, 8am: Had another surgery to remove wires left behind from transplant that were bruising me internally. My vocal cords were scratched during a quick intubation, and contracted asxpiration pneumonia
• Dec 21, 3pm: Discharged to be home for Christmas!
• Jan 14: Uclers finally healed (was diagnosed as extreme bodily stress and immunosuppressant medications)
• Jan 23: Pneumonia finally cleareds

Post Transplant

Today we CELEBRATE LIFE because I got a new life. In September 2023, I begin the Fall semester of my third year of PhD! I am thankful to get a chance at this life. While it means weekly blood draws and monthly heart biopsies and thrice-weekly cardiac rehab, I will gladly press on.
Having suffered from heart failure all my life, this new life I'm discovering what it means to be a normal human. I've also joined the school orchestra (CMU AUO), and continue to work on my research. I've got a story to tell and I will get there.
So for those curious, here's a bunch of things that I've learnt about humans, that I didn't have before, which I've learnt after 4 major life surgeries.

• Humans can climb more than 1 flight of steps and walk more than 300m without feeling breathless. Those were my limits all my life, and while I do see people walking more than that or climbing multiple flights in one go, I thought they trained reallllyyyy hard, and I resorted to thinking I was just weak.
• Humans pee on their own. I couldn't pee on my own. Such a simple body function would not work because my heart messes up the body pressure, causing the kidneys to retain water. With water retention, I would swell up, and would have to take medicines almost nightly to purge the water. In the extreme case (when I was admitted), IV medicines were needed to drain the fluid. With the medicines, I had side effects like stomach cramps, light-headedness etc. Plus, with the messed up pressure, I couldn't eat anything with oil and salt - yes, that's almost everything. So all social functions were extremely well planned in terms of the timing of medicines and rest.
• Humans have stinky poop. I would eat what my body needs, and if it doesn't want to digest the food, it would vomit it out. If I did poop, it's usually once every few days, and it does not stink. My body wasn't using the nutrients from the food, and with that came the need for other supplements and medicines. The first time I pooped by myself in the ICU post-transplant, I had a hallway applause - my body is normal!
• Humans get bug bites. I thought only some humans got them, but I learnt that all humans get them, except not all humans go outdoors during summer/fall. Previously my core body temperature was very low (34degC), and so no blood goes to the skin and gets detected by bugs. With that, I'm always feeling cold, and I can't warm myself. My feet would get blue after showers, yes, just normal showers. In the Winter I'd layer many layers and drink lots of hot chocolate (I can drink as much as I want because, remember, I don't pee naturally).

The Story is Still Ongoing

It is a whirlwind story, and I am still writing it. I'll keep updating the story as much as I can!

Thank you for the outpouring of love!

If you'd like to make a donation, you may use Venmo (US); (last 4 digits 1254; or send a friend request) or PayNow/ PayLah (SG folks).

Donations will go towards transplant expenses that the insurance does not cover, which includes post-transplant medications, hospitalisation bills, other miscellaneous items like special sunscreens. Additionally, in the future, if all goes well and there are extra expenses, I plan to use them to help out the less privileged heart transplant patients.