Jordan's story

Jordan Marcia

25 years old
Vancouver, Canada
**Transposition of the great arteries, Plastic Bronchitis, Lymphoma**
**Jordan is a 21-year Post-Heart Transplant Recipient**

My story begins on June 13, 1996. The day I woke up from a lengthy operation with a new heart beating inside me. I was only four years old, but I knew it was a memorable day when I was told that I was “gone for a while and brought back.”

I was born with a rare congenital heart defect called transposition of the great arteries, meaning my heart wasn’t pumping enough blood through my body, which in turn caused a rare lung disease called plastic bronchitis, making me constantly cough up things called bronchial casts.

The benefit to having an organ transplant at such a young age is that you quickly realise how short life is, along with how easily it can be taken from you, and I don’t say this in a figurative or poetic way; I was given ten years to live post-transplant.

I spent these years essentially fighting for life; from doctor visits to monthly blood tests. Then at age ten, I was diagnosed with Lymphoma, and I was back in hospital on a full-time basis. All through that period, I was absorbing my parents’ attitude and refusal to ever believe the words “he will not make it.”

Beating Cancer was probably my first big achievement. It was then that I decided not to be bound to my diseases, and I set on to go make my dreams come true. At first I was met with scepticism, but once I quit my job and sold my stuff, and after much reluctance, my family and cardiologists recognised that my life experiences counted for more than the number of candles on my birthday cakes. So, at twenty-two, I packed up, said my goodbyes, and left for my first solo adventure – a journey across Asia.

If backpacking isn’t challenging enough for healthy travellers, imagine what it’s like for someone whose heart is supposed to top out at forty years old - a mere fifteen years from where I’m at now. I do not complain about it, considering most transplant-recipients on average live only for ten years after the procedure, so I’m lucky it’s been extended to forty. Although I love to do all the experiences that come with travel, I must remain aware of my shortcomings. I am essentially working with one lung, so I stay away from swimming, running and basically most sports. A big part of my backpack is reserved for the months’ supply of medications that will keep me going, but try to explain that to customs officers in a non-English speaking country. The preparation takes longer, to ensure I’m well vaccinated and fit for it. I pay double for my travel insurance than most people. But the good news is that I have never needed medical attention while overseas (except for one time I fell off a scooter in Laos… All part of the journey).

I tried at one point to live a “normal” life with minimal risks. I attempted even having a relationship, but I couldn’t ask of anyone to have to live with this burden, and I knew then I did not want to have kids. At home, I cannot stay still. I am always consumed by the need to get out there, so I had to find a way to support it. I spend a lot of time now online looking for work that requires creativity. If my heart couldn’t work at maximum capacity, then I will make sure my brain makes up for it. I enjoy consulting, marketing, public speaking and making daily videos to inspire others.

Those who don’t know us often think that people like me live life feeling like victims, but I saw throughout my life and those of my fellow organ-recipient friends (many of whom are no longer around) that it couldn’t be further from the truth. I learnt to appreciate a whole lot more the things that most people take for granted.

I am thankful for the health system in Canada where all my treatment has been subsidised by my fellow Canadians. My heart breaks for those living in countries where they must go bankrupt just to stay alive. I witnessed throughout my years the big shift in the attitude of healthcare professionals. When I was younger, I did not have a say over anything concerning my treatment; my mother was simply told by my cardiologist what they will do to me and had no choice but to sign on it. It’s a different story today where the doctors trust my judgement and consider me their equal. They agree that my quality of life counts for more than mere quantity. I believe that patients should not be shielded from the world, but rather empowered to defy their condition and live their dreams. It was the only way for me to feel more confident in my abilities and even come to terms with my impending doom.

“Those who don’t know us often think that people like me live life feeling like victims, but I saw throughout my life and those of my fellow organ-recipient friends (many of whom are no longer around) that it couldn’t be further from the truth. I learnt to appreciate a whole lot more the things that most people take for granted.”

I have two dreams that I strive for: to become the first transplant-recipient to travel to all 196 countries in the world, and to do so while spreading as much needed awareness for organ donation, transplantation and the need for donors. I owe my life to my donor, and the only way I can make it past 40 would be thanks to another one.

At 25 years old, the average man is approximately 33 percent done with life, since the median lifespan is 76. If mine is cut down to forty years, then I’m now 63 percent through life. I hope to witness in my lifetime a historic achievement, like a fully functioning and affordable 3D printed heart; but not so much for my sake - I am happy with my remaining 37 percent, and I plan to continue making the most out of those years.

Follow Jordan’s adventures here: http://www.jordandmarcia.com