I am a qualitative, psychological researcher exploring the experiences of people living with kidney disease. End stage renal disease (ESRD) is a complex beast that may require its sufferers to undergo gruelling dialysis sessions three times a week, to restrict their diets and how much they drink, to bide time on a waiting list hoping for a kidney from a deceased donor, or to negotiate the emotional complexities of receiving a kidney from a living donor. Even when – if – a transplant has taken place, the renal patient has to take a cocktail of drugs (which come with a serving platter of side effects) every day for the rest of their lives. That’s a lot of different challenges for a person to get their head around.
My research involves speaking to people in-depth about their experiences, and then trying to illuminate those experiences in a resonant manner so that other people can walk a mile in their shoes – or perhaps more appropriately cleanse a pint of blood in their dialysis machines. My hope is that my work will better our understanding of the lives of renal patients; and better understanding makes for a better world, on so many levels.
Accepting a kidney from a living donor
Two of my studies have looked at the experience of receiving a kidney from a living donor. Common sense, that oh-so-reliable source, may predict that the decision to give a kidney away is a weighty and difficult one, a decision that may keep the potential donor up all night as they fret about whether they will ever play the piano again.
I’m sure this is the case for some donors, but I know from both research and personal experience that it’s not the case for most. When I made the decision to give a kidney to my dear friend, I did so in the blink of an eye. Why would I not want my friend to be healthy and happy, especially if it did me no harm? Somewhat less altruistically, why would I not want the accolades of friends and family for being a so-called hero? My somewhat shop-worn self esteem regularly needs a lift, and I now have an instant booster that I can reliably get out the memory cabinet and polish up for inspection any time I feel self-loathing start to creep in.
That same common sense might suggest that anyone who needed a kidney would jump at the chance to take any they are offered, and would be undyingly grateful for this chance at a fresh start.
But think about that for a moment. Would you want to be undying grateful? To anyone? Even if it does mean a chance at health? The shackles of indebtedness are real and heavy, and a kidney patient needs to be sure that any potential donor will not be pulling out the ‘but I saved your LIFE eyes’ during any disagreement, or expecting that they will now be a BFF until the end of time.
Add to this the fact that the recipient is asking the donor to undergo painful elective surgery (something the foolhardy donor may well not care about, but you still don’t want to ask for it, do you?) and we can start to see that receiving a kidney is much more emotionally complex process than donating one.
This dilemma is the driving motivation for my research, and my findings from both studies on this topic bear out the prediction that recipient/donor relationships are complicated stuff. In one study, one participant had received a kidney from a second cousin, a woman who lived on the other side of the world and who was no longer that close to her recipient. Another study participant received a kidney from her best friend, a friend so close they were almost like sisters. Counter-intuitively, the latter woman found post-op adjustment harder as she felt she could never speak her mind in an argument again.
A participant in another study was given a kidney by her daughter. She felt wracked with conflict and distress over this, in her words, ‘wrong direction’ transplant. Her family wanted her to be well and so were invested in the transplant going ahead. She presented a position of being happy with this, yet seemed wracked with uncertainties beneath the surface.
These were the sorts of situations that came up for my participants; emotionally complex situations which have gone largely unnoticed by the current literature. I hope that by illuminating the fact that renal patients agonise over situations like these, I can help them be more fully supported through those decisions.
Johanna will be talking about her research at an event called “Psychology: what’s the next big thing?“, at the Science Museum on Wednesday 15 January 2014.