228 G. O’Brien
to plan all other activities to accommodate it. Life for these participants
was experienced as being dominated by restrictions and limitations:
most notably in terms of time (‘taken’ from their lives for dialysis),
diet (particularly fluid intake) and lifestyle (e.g. inability to partici-
pate in some social activities; difficulties entailed in travelling) (see also
Bayhakki and Hatthakit 2012 ; Clarkson and Robinson 2010 ; Shaw
2015b).
At four and a half years, Alan (of all the prospective kidney recipi-
ents) had been on dialysis for the longest length of time. He reported
having to go into hospital three times every week, being ‘on the
machine’ 5 hours each time, and always feeling sick afterwards. He con-
tinued to work throughout this period however, stating this was only
possible because his employers were ‘very lenient’ and allowed him
to work around his dialysis schedule. While Alan spoke of the many
things he could no longer do because of dialysis and the difficulties
he endured, there was no sign of self-pity in his narrative. It seemed
that hope for a kidney (and a quality of life similar to that of his sis-
ter, who had previously received a kidney transplant) gave meaning to
dialysis, the sickness it caused and the restrictions it imposed on his life.
As highlighted by Billington et al. ( 2008 ) in their study of hope in the
context of end-stage renal disease (ESRD), hope functions to lessen the
impact of ESRD and its treatment, reducing the emotional burden.
All prospective kidney recipients were on dialysis and reported (to
varying degrees) their struggle with dialysis, as it represented the treat-
ment for, and cause of, sickness. In keeping with the wider research in
this field (e.g. Clarkson and Robinson, 2010 ; Shaw 2015b), participants
universally acknowledged transplantation as representing ‘freedom’ from
dialysis. Luke, for example, stated that transplantation is ‘the gift of
freedom, more so than life. I mean, ah, dialysis is life ... Um, the gift
of a kidney is more about freedom’. Jacob expressed similar sentiments:
‘you are um, pretty well, you know, bonded to that machine, and ah,
it’s, it’s your life and if you don’t have it, you die’. He stated that trans-
plantation, to him, meant not ‘having to rely on [that machine]’ and
returning to ‘the freedom [he] had before [he] started dialysis’.
Prospective kidney recipients indicated their belief that dialysis was
keeping them alive. It might be anticipated, then, that their treatment