Organ donations continue to rise and a growing number of countries are adopting assumed consent donation policies. These recent shifts can partially be explained by increasing public awareness that organ donation saves lives.
But it is important to understand that life for people receiving an organ transplant will never be the same. The experience of being a transplant recipient involves managing ongoing medical treatment, an uncertainty about future illness and a complex emotional relationship with one’s donor – living or deceased.
With a growing number of transplant recipients using sport and exercise as a means to maintain health and well-being following their transplant, our research is revealing for the first time how sport can play a crucial role in the lives of transplant recipients as they deal with the realities of their health being reliant on someone else’s organ.
For many transplant recipients, especially those requiring kidneys, transplantation is seen as a treatment rather than a cure for illness. This means that patients may rely on organ donation multiple times throughout their life, making them especially aware of the need to take responsibility for looking after their own health.
One participant with a transplanted liver in our study told us:
I’m always conscious that I’ve got somebody’s organ in me. I always give it a little tap [to say] ‘Are you okay in there? Have I been good to you today?’
Many transplant recipients see sport and exercise as a key way to maintain their health and to keep their transplanted organ as functional as possible. Participating in physical activities allows patients to work towards sustaining their own health. Importantly, this self-care is also experienced with a sense of gratitude and duty towards one’s donor and donor family. As another interviewee put it:
Somebody has donated those organs, and because of that person you are alive. So you sort of owe it to them.
Transplant recipients can also see sport and exercise as a way of redefining themselves. After being on a transplant waiting list for months or sometimes years, people may have difficulty in the shift from seeing themselves as being ill to being healthy again.
Sport and exercise can be a way of exploring new physical capabilities and rediscovering old ones. One man whose cystic fibrosis had affected his breathing since childhood commented:
I wanted to show off my new lungs. Wouldn’t it be amazing to do something cardio-vascular? So I thought, why don’t I join an athletics club and see where that takes me.
Indeed, sport and exercise provide tangible milestones for new transplant recipients. They serve as a benchmark of health status, provide motivational goals and allow opportunities to celebrate survival.
Around the world, there are now opportunities to compete against other transplant recipients in events such as the Australian Transplant Games, the European Heart and Lung Transplant Championships and even the World Transplant Games which takes place every two years. These events have the value of providing rare and important opportunities to build social relationships with other transplant recipients.
This sporting life
After what are often isolating illness experiences, social relationships at these events provide participants with emotional support, health advice and knowledge about what to expect in the future. In the words of one competitor:
It’s good to see that thousands of other people are going through the same thing, and successfully. It gives you hope that you can keep going and keep living for as long possible.“
Of course, increased social reach has a less positive effect when participants learn of the ill health or death of friends and teammates. When this happens, one transplant recipient said:
I guess maybe I have an underlying fear that maybe my liver disease will come back one day. I’m not expecting in any way that it will, but it gets you thinking about it a bit. It is a healthy reminder that it’s not all plain sailing.
Plain sailing it isn’t. But newly transplanted patients and their medical teams should be aware of opportunities to participate in sport and exercise and the ways in which this can affect their experience of illness.
For anyone registered as an organ donor, this illuminating research may also demonstrate how transplant recipients so often do make the most of the “gift of life” – when they are lucky enough to receive it.
Gareth Wiltshire is affiliated with the Transplant Sport UK charity as a volunteer coach.