Living with a Heart Transplant: The Real-Life Version
Discover the real-life experience of living with a heart transplant—no gloss, just honest insights into grief, recovery, daily challenges, and meaningful moments from author Nic Russell.
There's a popular narrative around heart transplants—the one where your life is magically restored, gratitude flows endlessly, and maybe you even share a heartwarming moment with your donor’s family. Well, that's not quite the whole story.
I've faced some big medical hurdles—stage 3 cancer, double mastectomy, chemotherapy, radiation, immunotherapy—you name it. Those years stripped me bare physically and emotionally. But I got through it.
Then came the heart transplant, and it challenged me in ways I didn’t expect. Physically, it knocked me sideways. Emotionally, it felt heavier, different, more complex. I carry the quiet, persistent knowledge that someone else had to die for me to keep living. It’s not dramatic; it’s simply my daily reality.
You never learn the identity of your donor or, if you're a donor family, who received the organs. That's not secrecy; it's privacy—part of transplant protocol worldwide. Yes, some donor families and recipients eventually connect, and if that brings comfort, that's wonderful. But it’s not the norm, and it’s definitely not for everyone.
People often assume I'd want to meet my donor's family. Honestly, I don't. I’ll be forever grateful to my donor family for the best gift I’ve ever received in my life, but I do not want to meet them. The thought of someone knocking on my door to say their loved one’s heart beats in my chest feels overwhelmingly heavy. That’s not a moment I want or need. It’s not about being cold; it's about knowing my limits. Some experiences are better left untouched. Instead, I have written to them, to let them know how their exceptional gift has changed my life, what I am doing as their heart's guardian to look after it, and how exceptionally grateful I am to them
My daughter, Kenzie, died after multi-organ failure—her organs couldn’t be donated. This meant I got precious moments to hold her in my arms as she died. I didn't have to say goodbye while she was still hooked up to machines. For parents who choose organ donation, that farewell often looks very different. They say goodbye while their child is still on life-support before they are taken into surgery. It is unimaginable, grief colliding with generosity in real-time. Organ donation is profoundly complicated because you’re giving the ultimate gift at the moment of greatest loss.
A friend of mine donated her adult child’s organs. She also does not feel the need or want to find out who the recipients are or wish to meet them. For her, she said, it would not bring comfort, only distress. A reinforcement of the reality that her precious child no longer walks this planet and how cruel life can be. I completely understand. We often talk about these raw moments. As bereaved parents, we get it, even if society does not. It prefers stories of hope, but real grief doesn’t follow tidy narratives.
Post-transplant life means steroids, anti-rejection meds, blood tests, biopsies, echoes, angiograms, and an ever-changing carousel of side effects. Long-term steroids turned me into an emotional mess, amplifying my already fiery Northern Irish temperament. I’ve recently come off them, but my bones are struggling with osteoporosis (thanks, early menopause from cancer), and my Parkinson's symptoms have gotten worse. It feels a bit like medical russian-roulette, what's next? Another cancer just for the craic? The possibility is real being permanently immuno-compromised. But you adapt, stay vigilant, keep up the healthy diet, daily exercise, take your drugs, vaccines, and thank the miracle of medical science and the team of amazing health professionals who keep us alive. Without the science, the medics and the drugs. I would of been dead long ago.
My daughter Kenzie only got 3 short years on this beautiful world, and even though my body keeps trying to kill me, I am still here. So I honour her life, and now my donor's too, by embracing moments worth celebrating. Daily ocean swims (when Auckland’s infrastructure behaves), hikes through New Zealand’s stunning bush, mountain biking in Rotorua's redwood forests—these experiences matter. Recently, I even signed up for my first organised sporting event in over a decade.
I returned to scuba diving—a deeply meaningful milestone for a former instructor. My son Conor has graduated from university and started his career. I got to meet Graham Norton and I've shared extraordinary moments, like swimming in an icy alpine lake in Mackenzie Country with Sarah, another bereaved mum living with incurable cancer, honouring our daughters (both named Mackenzie). You cannot put a value on these memories; they’re just incredibly precious.
Life is not easy, but is it worth it? Absolutely.
Maybe you're waiting for a transplant, you've just had one, or you’re supporting someone through it. Wherever you’re at, know this: there’s no ‘right’ way to feel. Your emotions will swing, sometimes wildly. Steroids and medications will amplify this rollercoaster. My family and friends certainly deserved medals in tolerance for all the love, care and understanding they showed me when I thought I was losing all sense of myself.
It's not too strong a word to say I hate being a patient; I hate the loss of my autonomy, my freedom. It makes me grumpy. So I used that to fuel my determination and drive to do all I could to get home. Nine messy, emotional days after my transplant, I was discharged from hospital to a communal residential facility for heart and lung transplantees known as Hearty Towers. I didn't want to be there. Two weeks later, I was home thanks to my amazing and extensive support crew. They continued helping by driving me to appointments, being my daily workout buddies, dropping off food, organising weekly cleans of the house and more.
Six weeks after transplant, I was walking 5 kms and going up North Head.
Twelve weeks later, I was back at work part-time.
What followed from there was an intense year of ups and downs.
Everyone's experience will be unique to them. No two will be the same. You can't compare and set your benchmark against anyones. Please do not take my experience as a show and tell, and this is how it will be. I've had my share of set backs and complications too.
Even now, nearly three years later, I still have ups and downs with the odd transplant surprise thrown my way. But I am above ground, and that's a win in my books.
To all families who give the ultimate gift in the most traumatic moment in your lives, thank you. We, the recipients, owe you our lives. It is a gift we value more than words can express.
