Meet the Riders
Read the stories of some of our amazing heart and lung transplant recipient riders who participated in HLRI’s 2023 Inaugural Breaths and Beats Ride below.
Alex is 24, she just completed her masters in astrophysics at UWA and was working in consultancy before PhD commencement. Previously well, a virus attacked her heart and suddenly meant that she had literally days to live. Alex ended up having an urgent heart transplant. Now, less than 6 months later, this rising star is fit and well, back at work, and about to submit her first paper to an international astrophysics journal.
My name is Jackie, I’m 31 years old and two years ago I was lucky enough to be gifted two beautiful new lung babies. Cystic Fibrosis had ravaged my original lungs, scarred and damaged from infection after infection. They served me well, but could no longer. Leaving me on the waitlist for a life saving organ transplant. November 2020 my call came. While I celebrated, another family grieved their loved one, making the selfless decision to donate their organs and save several others. I will forever be grateful for this second chance at life, for this extra time on earth. Life pre transplant was a struggle. I was on supplemental oxygen 24/7 and overnight ventilation for the 18 months prior. I couldn’t work, I couldn’t even shower without sitting on the floor. I felt lost, alone and scared of death as I felt it creep closer and closer every day. Living felt like a chore. I was recently married to my amazing husband, but instead of family planning, we were talking about the possible what if’s of me not surviving. It was a terrifying time in our lives. Two years on and I continue to be amazed by being able to breathe so deeply. I will never take for granted the feeling of oxygen dispersing to every space in my lung babies. Those deep breaths feel like they could go on forever, something I had never known before. Life is so different now and I’m grateful every day for the heroes that saved my life. For that I am riding in the Breaths and Beats event to create awareness and raise funds for the Heart and Lung Research Institute. Without these guys, transplants wouldn’t be as successful as they are today. They’re doing amazing research into preserving organs for transplant and preventing organ rejection. Research we need to extend the median survival age of transplant recipients.
I was born with a congenital heart defect and have lived my life knowing only the feeling of a heart and body running at half capacity. I had my first surgery when I was only three months old, followed by multiple open-heart surgeries growing up. I was also fitted with a pacemaker when I was 32. It was thanks to the support and research from causes like the Heart and Lung Research Institute of WA that I’m here today. It’s been one year since my heart transplant, and, as a congenital heart patient, my new heart has allowed me to experience a life that I never thought was possible. I constantly catch myself smiling during tasks that I would have struggled with beforehand. Something as simple as walking or gardening used to take a lot out of me. Now I’m much more confident to push myself into an active lifestyle. I’ll be riding 34km because I can.
My journey started 14 years ago when I was diagnosed with cardiomyopathy just before my 40th birthday. That was going well with treatment and medication and the heart improved slightly. I then had atrial fibrillation that started July 2021. I had a number of cardio versions and ablations with no success. In February 2022 I had one last ablation and I got a blood infection which attacked the left hand side of my heart to the point that my kidneys shut down to protect the heart. The cardiologist came in and said I was very sick and needed a Vad heart pump to pump blood around my body, the infection people said if you operate you will kill him and doctors said if we don’t he will be dead by tomorrow arvo. So I decided for the Vad woke up in intensive care 24 hours later. I was supposed to be out of ICU after a few days but I just wasn’t getting better. The doctor said something not right, they even called my wife and told her that I may not make it. They then did a ultrasound and found two holes in my heart, so I went in to surgery again where they patched the holes in my heart. I started to improve immediately. Three weeks later I was out of ICU and feeling good. The next four months I got stronger and stronger and on the 21st of June, four days after my 54th birthday, we got the phone call we’d been dreaming about and hoping for. A matched donor heart was found in Queensland. It was the best birthday present from my donor family that I will never forget. The heart transplant surgery was fantastic, I was in ICU for 5 days and was ready to go home after two weeks. I had a rejection level two so had to stay in hospital for 1 more week with heavy doses of steroids. Once I was home my new life started and I am feeling amazing! I want to do this breaths and beats ride for research, because without this institute I may not be here today and by raising as much money as I can and maybe help save one life like mine it will all be worth it.
My name is Aaron, I’m now 29 years old, and in 2021 I received the ultimate gift… a heart transplant.
Anyone who knows me well, will tell you what an energetic and motivated young person I was growing up. I was a healthy person, working hard in my studies, receiving my Bachelor of Civil Engineering at the age of 21, enjoying a busy social life and thriving in my sport which has been competitive road cycling since the age of 13.
I’d met the love of my life, my now wife Emma, in high school, travelled to Europe, got married at 23, went to Europe again and then became set to be a new dad. Life was just getting started.
And then one night, I was up struggling to breathe, drove myself to the hospital emergency where it was suspected that I had pneumonia. 4 weeks later after not getting better and requesting an X-ray from my GP, I got a phone call at work first thing in the morning and headed straight back to emergency. That day I was diagnosed with severe idiopathic dilated cardiomyopathy, end stage heart failure, at 27. My son Oliver was born 3 days later on Christmas day.
From here I spent months of treatment under the world-class care of the advanced heart failure and coronary transplant team at Fiona Stanley Hospital. I was young, seemingly fit beforehand and active for my age so initially I pretty much disregarded the prospect of a heart transplant because it was just unthinkable. I would get better.
I went on living for some months with what I guess I thought was the hope I might get through this with rest and the right medication, it got harder and harder to do even the simplest of daily things because I would get short of breath or a racing heart rate doing basic tasks and was not able to help my wife raise our new-born because I was extremely tired needing sometimes more than 12 hours a night of sleep. I also had to wear a cardiac vest with the constant anxiety that it could shock me if an irregular heartbeat was detected. I pretty much had to stay home and be on the couch or in bed all day.
Eventually as my follow up testing showed a decline rather than improvement, I was told that the only thing that would continue to keep me alive and return to a quality of life I knew was a heart transplant from a donor that was yet to be found. Suddenly knowing I wouldn’t get the opportunity to spend a future with my wife and see our son grow up without it was the single most difficult thing I have ever had to overcome.
Then came the wait for the all-important call that they had found me a suitable match for a new heart. Initially I’d been told that I could be waiting roughly 6 months which was scary because if things kept going the way they were I had no idea how much longer I would live for.
Then one day, while in the cardiac hospital gym trying to gain what little strength I could in preparation, it got to a point where I had said to my doctors that I wasn’t feeling well at all. Straight away, I was seen in the clinic the next day and it had come to the time where I would be admitted to permanent hospital care, basically to keep me alive until they found me a new heart. I wasn’t coming out of hospital without one.
Then came what I now consider nothing short of a miracle. The morning straight after being dealt this devastating news, I received a 6am wakeup call from the transplant team. They’d matched me with a donor. The only thing that hangs in my mind that morning was simply “Aaron, we’ve found you a heart”.
To give you an indication of how sick I was, I had waited a short 5 weeks. This was almost unbelievable and very fast, generally because when you become a critical patient like I was the call out for any possible donors becomes urgent and you ‘move up the list’ so to speak.
But amongst it all, I was immediately drawn to the realisation that someone I will never know had just saved my life and everything in it that I love the most; all because of a truly selfless and beautiful gift that they and their family bestowed upon me, a stranger. For my donor family to come to such a decision to save someone else’s life during their sadness, I cannot express enough how eternally grateful I am.
It’s because of this that I spend every moment in gratitude to my donor. Although I will never be able thank them and their family enough, I strive to express my thanks by continuing to live my best and fullest life by loving my family, being there for my friends, staying healthy, slowing down and focusing on enjoying the simple moments of life.
What my transplant has been able to do for me in returning to my normal way of life is remarkable. Not only have I been able to be here to love and see my son grow up, take his first steps, and say his first words; but I can share all the joys of life again with my loved ones.
I have also returned to my love of road cycling again, training up to 6 days a week; and because of this I am also able to take part in my very first world transplant games right here in my hometown of Perth next year; another thing I thought impossible after my transplant. You’ll find me on the track at Wanneroo Raceway for the 30km road race, 10km individual and 20km team time trial events. I’m extremely excited and can’t wait for the Perth community to get involved.
There are just so many things I can share with you to show how powerful the gift of organ donation can be. It takes someone’s life that has been turned upside down in an instant and gives them back what they know and love. What I encourage if you haven’t already, is talk with your loved ones and consider registering to becoming organ and tissue donor through DonateLife.
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