ARTICLE IN PRESS

Social Science & Medicine 61 (2005) 821831

www.elsevier.com/locate/socscimed

Desperately seeking normal: the promise and perils of living

with kidney transplantation
Megan Crowley-Matoka
University of Pittsburgh, VA Center for Health Equity Research and Promotion, University Drive C, Pittsburgh, PA 15240-1000, USA
Available online 14 November 2004

Abstract
Organ transplantation offers a dramatic example of the promises for health held out by biomedicineand thus, a
productive vantage point from which to interrogate those promises. Drawing on ethnographic research on kidney
transplantation in Guadalajara, Mexico, this article examines the version of health offered to patients through
transplantation. The paper explores patients transplant trajectories as they move from learning to desire a transplant to
actually receiving one and living with it over the long term, all within particular structuring sociocultural and political
economic conditions. The article analyzes how transplanted patients are forced to come to terms with the contingent
states of health and normality wrought by transplantation as they carve out an existence in the persistently liminal
spaces between the roles of sick and healthy, dependent patient and fully contributing family member.
r 2004 Elsevier Ltd. All rights reserved.
Keywords: Transplantation; Mexico; Liminality

Its like we get the transplant and then nobody cares

what happens next. We get sent off to our local clinics
and thats ity I thought everything would change,
once I got my kidney. And it hasbut not always like
I thought it wouldyI thought I would be healthy
again, and normal, but really Im just a different kind
of patient now. Felipe (IMSS, traveling salesman)1

Introduction
As the gift of life, organ transplantation operates as
a powerful popular symbol of the wonders of biomedical
Corresponding author. Tel.: +1 412 688 6000 81-5193; fax:

+1 412 688 6527.

E-mail address: mcm29@pitt.edu (M. Crowley-Matoka).
1
Names have been changed to protect identities. As
approximate markers of socioeconomic status, patient quotes
are identied by hospital and a brief occupation descriptor.

achievement, of the ability of science to triumph over

illness and even death itself. The mechanistic image of
replacing a failed organ with a new one is often imagined
to restore health in a fairly straightforward way,
analogous to simply replacing a faulty motor part. As
such, organ transplantation offers a dramatic example
of the promises for health held out by biomedicine
and thus a productive vantage point from which to
interrogate those promises. Social scientic approaches
to health and medicine have often focused on the
sociocultural construction of illnesses and their treatments, but less on how ideas about what constitutes
health are simultaneously and similarly constituted.
Yet particular understandings of health and life
form the often-unexamined ground against which
biomedicine wages its battle against illness and death,
and offers its promises for salvation. Ethnographic
research on kidney transplantation in Guadalajara,
Mexico allows us to bring some of this unexamined
ground to the fore so as to examine the version of

0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2004.08.043

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

health being offered through transplantation, and to

explore how the ability to attain this version of health
is conditioned by gender and socioeconomic differences.
Social scientic analyses of organ transplantation have
focused broadly on two key areas: (1) issues of hybridity
and boundary crossing raised by the act of moving an organ
from one body to another; and (2) the local and global
political economies governing the ow of organs from
donors to recipients. At a symbolic or interpretive level, the
sometimes uneasy mixture of self and other in the body of
the transplant recipient has preoccupied some scholars (Fox
& Swazey, 1974; Sharp, 1995), while others have focused on
the blurring of boundaries between life and death, nature
and culture, and human and machine in the brain dead
organ donor (Lock, 2001; Hogle, 1999). The nature of
relations between organ donors and recipients has also
provoked myriad debates over gift vs. market models
for circulating human organs (Fox & Swazey, 1974, 1992;
Peters, 1991; Murray, 1996). Further exploring the issue of
bodily commodication, recent political economy analyses
have focused on the global trafc in human organs, tracing
out open and clandestine networks through which organs
ow along familiar resource paths from South to North and
poor to rich (Scheper-Hughes, 2000; Cohen, 1999).
This analysis brings together interpretive and political
economic approaches to interrogate the promises and
realities of health as they unfold over the long-term
course of living with kidney transplantation in Guadalajara, Mexico. The realities of not just receiving a
transplant, but living with one over time to date have
received inadequate attention (Joralemon & Fujinaga,
1996). Focusing on what happens after the transplant
calls into question the popular vision of transplantation
as a death-defying triumph of science over sickness. This
paper examines the sociocultural and political economic
conditions of kidney disease and transplantation in two
kidney transplant programs in Guadalajara and explores the particular discourses that motivate patients to
look to transplantation as the way out of illness and the
sick role to which they have been consigned. The paper
then takes up the realities of living as a transplanted
person, using the concept of persistent liminality to
make sense both of these patients hopes for transition
into a new social role, and of what happens when they
nd themselves caught betwixt and between the roles
of sick and healthy, patient and normal
person. Ultimately, the lived experiences of these
patients reveal a much more contingent and often
deeply-vexed version of the gift of life and the
possibilities for health offered up by transplantation.

Research context
This research was conducted in the city of Guadalajara, Mexico during the periods of JulyAugust 1998,

August 1999June 2000 and February 2001. Guadalajara, Mexicos second largest city, is located several
hundred miles northwest of Mexico City and serves as a
major resource and service hub to the six surrounding
states. As such, Guadalajara has two elite tertiary-level
hospitals that draw people seeking specialized healthcaresuch as transplantationfrom all over western
Mexico and beyond.
These tertiary-level hospitals represent the two major
government-run healthcare systems in Mexico, the
Instituto Mexicano de Seguro Social (IMSSMexican
Institute of Social Security) and the Secretaria de
Salubridad y Asistencia (SSAMinistry of Health and
Welfare). The IMSS is the largest of the federal
healthcare systems, providing coverage for slightly over
half of the Mexican population (INEGI, 1998). In
general, the IMSS serves a working/middle-class patient
populationwith important exceptions. Broadly speaking, the IMSS serves people employed in the formal
sector who (along with their employers) pay into the
national Social Security system. In addition, formal and
informal mechanisms exist by which people who are selfemployed and/or working in the informal sector (such as
domestic workers or the ubiquitous street food vendors)
can also often obtain rights to the IMSS system.
Nationally, the IMSS possesses the most well-developed
infrastructure of clinics, hospitals and specialized
equipment of any of the Mexican healthcare institutionsincluding the private sector. IMSS coverage
entitles beneciaries to all necessary medical treatment
at no cost, at least theoretically without limits on
expense, type or duration of treatment. Importantly, it
also includes rights to prescription drug coverage. The
IMSS system consists of a national network of locallevel clinics, community-level hospitals and a handful of
tertiary-level specialty hospitals. IMSS patients are
assigned to a local-level clinic and ofcially require
referrals upward through the system to obtain more
specialized care.
At the time of this study, the IMSS Centro Medico de
Especialidades (Specialty Medical Center) in Guadalajara housed the countrys most active kidney transplant
program. Although the hospitals rst successful kidney
transplant was in 1976, transplant activity was sporadic
until the mid-1990s when a US-trained nephrologist
took over with ambitious plans for expansion. Under his
leadership, the IMSS program grew dramatically and in
20002001 was doing an average of 200 kidney
transplants annually and was also initiating a liver
transplant program.
The Secretaria de Salubridad y Asistencia (also
known as the Secretaria de Salud) is a public charity
system run by state-level government ministries. More
loosely organized than the IMSS, the SSA system
provides in-patient healthcare for those without coverage or resources to pay for private care. Importantly, the

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

SSA mandate does not include out-patient healthcare

thus medications are no longer provided once patients
are discharged. Estimates suggest that approximately
1015% of the population depends primarily upon the
SSA for healthcare (INEGI, 1998). Patients in the SSA
system pay quotas for their care, based on a sliding
scale assessment of income, and many pay nothing at all.
In Guadalajara, the SSA maintains a general hospital
and a tertiary-level specialty hospital to which people
travel from all over Mexico. Because the SSA is
committed to providing in-patient care to all, regardless
of ability to pay, patients do not require a formal
referral to the tertiary-level hospital, although long
waits for hospital beds and services restrict access
considerably.
Also under the direction of a US-trained nephrologist,
the SSA hospitals transplant program did its rst
kidney transplant in 1990. Subsequent growth has been
halting, never quite achieving the goal of one transplant
per month. A major limitation to growth has been the
hospitals inability to provide patients with the immunosuppressive drugs required after transplant surgery
due to SSA coverage of in-patient care only. Aware of
the life-long expensive commitment these drugs represent, the program director has been reluctant to
transplant patients without a plan to guarantee ongoing
medication access. Despite resource limitations, however, the SSA hospital maintained not only an active
kidney transplant program, but was also the site of the
countrys only successful liver transplant program
during the study period.2
In addition to the major government-run healthcare
systems, both private and alternative healthcare
services are also widely available and used in Mexico.
Although most Mexicans make use of some form of
private healthcare, less than 10% of the population
relies primarily on private care (INEGI, 1998). During
this study, private hospitals in Guadalajara performed
relatively few transplantslargely because transplantation was considered to garner more prestige than prot.
As a result, the private healthcare sector remained a
lesser research focus. Similarly, while many Mexicans
turn to herbalists, naturalists, homeopaths and curanderos (folk healers) for some health needs, these were
also less central sites in the context of research on
transplantation.

Research methods
This paper presents one facet of a larger study of
kidney transplantation in Guadalajara and draws
2
The sociohistorical development of this liver transplant
program deserves its own analysis, which this paper cannot
accommodate.

823

primarily on data collected through participant observation and in-depth interviewing. While conducting eldwork, I alternated time on a daily basis between the
IMSS and the SSA transplant programs so as to be an
ongoing presence in both throughout the research. Daily
observations and informal interviewing with patients,
families and program staff members were recorded by
hand and formalized in eldnotes typed up at the end of
each day. I also conducted in-depth, taped interviews
with 50 transplant patients to elicit illness narrative
(Kleinman, 1988) accounts of the full course of their
transplantation experiences. These formal interviews
were divided evenly between the IMSS and SSA
programs, and between patients already transplanted,
patients awaiting live donor transplantation, and
patients awaiting a cadaveric transplant. In all, I
interviewed 22 female and 28 male patients, with ages
ranging from 17 to 62 years. Patient socioeconomic
status varied widely in both programs, ranging from
college-educated upper/middle-class (engineer, small
business owner) to high school-educated working-class
(factory worker, food vendor) to grade school-educated
marginalized poor (farm laborer, unemployed single
mother). Patient interviews often included family
members (including living donors) for some portion of
the interview, and lasted from 45 minutes to over four
hours. Interviews were conducted wherever patients
preferredsometimes in the hospitals, but often in
homes, restaurants and neighborhood parks. Ongoing
contact was maintained with many patients in the
sample before and after the formal interview, and
changes over time were tracked in the eldnotes. In
addition, interviews were conducted with key transplant
program staff in both hospitals, as well as with
administrators responsible for policy and budget decision-making. These interviews included ten physicians,
seven transplant coordinators/social workers, two psychiatrists, four nurses, one nutritionist and three
administrators. Complementing the qualitative data,
both the IMSS and SSA programs generously shared
their patient databases, which included demographic
information on transplant recipients and donors.
Systematic content analysis was used to identify
recurrent themes, patterns and relationships in the
qualitative data. Fieldnote data were also coded and
abstracted into a database to track the 323 patient cases
observed during the eldwork. Quantitative data from
the eld observation and transplant program databases
were used to generate descriptive statistical analyses.

The promise of normal: cultivating the desire for a

kidney transplant
At rst, I didnt even want a transplant. I didnt even
want to hear anything about it, because it just seemed

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

too ridiculous, too strange, to have anything to do

with me. At that time, I was doing ne on dialysis at
home, and so it seemed crazy toyto think about
something so outside of my world. Lupe (SSA,
housewife)
Kidney disease often goes undiagnosed in Mexico,
partly because of the diffuse nature of renal failures
early symptoms (nausea, dizziness, fatigue, swelling of
extremities), and partly because little specialist expertise
exists outside urban centers. Many patients tell desperate stories of going to multiple public and private
physicians, naturalists and curanderos before having
their kidney disease correctly diagnosed. Diagnosis,
however, is only the rst hurdle confronting kidney
patients. Currently, there are three biomedical treatments for kidney failure: peritoneal dialysis, hemodialysis and transplantation. In peritoneal dialysis, the most
commonly-used treatment in Mexico, dialysate uid is
introduced into the abdomen through a permanent
catheter to draw out (through osmosis) the waste
products and excess uids which the kidneys can no
longer process. Peritoneal dialysis is done at home, but
requires three to four cambios (changes) per day,
expensive, bulky supplies, and stringent hygienic conditions. In hemodialysis, an analogous osmotic process is
used to lter excess waste and uid directly from
patients blood, using an articial kidney machine. In
Mexico, hemodialysis is done in hospitals, typically on a
twice-weekly schedule. Hemodialysis is generally preferred over peritoneal dialysis in resource-rich countries
like the US,3 but the expensive equipment it requires
renders it extremely scarce in Mexico, where it is
available only in a limited number of hospitals and only
for patients either too deteriorated to continue with
peritoneal dialysis or wealthy enough to pay for private
sessions. Although some dialysis patients can survive for
years, mortality rates in Mexico are grim, with one
recent study in western Mexico reporting only 30%
survival after two years (Ortiz, Ruelas, Palomeque,
Paredes, & Canales, 2000). Comparatively, two-year
survival rates on peritoneal dialysis in the US have been
reported at 77% (Fried, Bernardini, & Piraino, 1996)
and ve-year at 74% (Ohashi, Ohno, & Sakata, 1999).
Reasons for high dialysis mortality rates in Mexico are
undoubtedly complex and related to factors such as
comorbidities, timing of diagnosis, nutritional status
and equipment quality. Given this bleak context, staff in
the Guadalajara transplant programs were rmly convinced that kidney transplantation offers patients the
best chance for long-term survival.
3
There is, however, growing debate over US reliance on
hemodialysis, with some indications that morbidity/mortality
rates on peritoneal dialysis may be comparable or superior for
some groups (Murphy et al., 2000).

Yet despite the dire dialysis situation in Mexico, the

familiar North American image of ever-increasing
numbers of patients clamoring for a nite number of
organs does not quite describe the dynamics of the
institutional and sociocultural realities of kidney transplantation in Guadalajara. In Mexico, due partly to a
lack of available organs from brain dead donors, over
90% of kidney transplants are done using organs from
living (usually related) donors (Monteon, 2000).4 This
contrasts starkly with North America and Europe,
where most transplants are performed using organs
from brain dead donors. One effect of this dependence
on living donors is that the Guadalajara kidney
transplant programs were not primarily limited by a
shortage of available organs (although for those without
a living donor, the situation was obviously desperate).
Rather, the volume of transplants performed in these
programs was more typically limited by two key factors:
(1) lack of infrastructural resources such as operating
room time and staff; (2) lack of available candidates
ready for transplantation. While the lack of infrastructural resources to support transplantation is hardly
surprising, the lack of available patients may seem so at
rst glance. On the healthcare system side, causes for
this lack of transplant candidates included the abovementioned fact that kidney disease often goes undiagnosed in Mexico, so many potential candidates are
simply never identied. In addition, community-level
healthcare providers may resist informing or referring
potential candidates on for transplantation for a
complex set of reasons, including unfamiliarity with
transplantation, professional resentment of the resources and prestige garnered by transplantation, and/
or personal gatekeeping decisions about which patients
are appropriate candidates based on informal medical,
psychosocial and economic criteria. Further compounding these problems was the arduous series of medical
tests and consults to be completed for each candidate
before a transplantwith luck, perseverance and a little
agilizando (speeding up through extra help or favors)
these tests could take as little as two months, but for
many could drag on as long as two years. Not
surprisingly, patients with fewer economic and social
resources often found it more difcult to wend their way
through this arduous process, for reasons related to time
(away from job and home), travel costs, and the
particular social/political skills useful in navigating
hospital bureaucracies.
However, barriers within the healthcare infrastructure
were not the only limitation to the number of patients
ready for transplant. An additional key barrier was the
fact that the desire for a kidney transplant was hardly an
4
Reasons for this extremely low cadaveric donation rate are
complex and beyond the bounds of this paper. For more
detailed discussion, see Crowley-Matoka, in press.

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automatic one among patients in this study. On rst

hearing about transplantation, most patients reported
being confused and even frightened by the prospect, as
was Lupe (quoted above). Patients had trouble reconciling the image of this high-tech modern treatment with
their own daily experience of hospitals where kidney
disease often goes undiagnosed and supplies often run
short. As a result, many patients hung back at rst,
uncertain and uncommitted to the idea of transplantation: My doctor mentioned the idea of a transplant to
me when I was rst diagnosed, but I thought, thats not
for mey I suppose it seemed like something for rich
people, movie stars, people who can go up there [to the
US]not for me (Berta, IMSS, telephone operator).
Compounding this reluctance was the strong dose of
general skepticism with which many Mexicans approach
government-run institutions. Decades of experience
under a corrupt single-party system, as well as frequent
healthcare-related media scandals, create a context in
which patients are less likely to automatically trust the
information and treatment options offered by their
healthcare providers.5 Some patients were wary of
program staff claims that transplantation offered their
best optionalthough most were careful to hedge their
bets and conceal these reservations in order to maintain
a good patient image. One such patient, Jose,
described his strategy:
I am getting the tests done, so that if it turns out I
need a transplant, I can get one. But I am not sure I
really need one. Ive been doing really well on
dialysisy And I think there is a chance that my
kidneys might be coming backy So I think maybe
Im getting better and I wont even need one. I dont
really want a transplant right now. But I dont tell
that to the doctors, I go along with the tests, just in
case. Jose M. (SSA, janitor)
As Joses quote also suggests, another element
contributing to the lack of urgent desire for a transplant
among some patients is the somewhat paradoxical truth
that those patients most eligible for transplantation in
Guadalajara were also those who had done relatively
well and achieved some measure of stability on dialysis.
Having seen so many die so quickly in dialysis, these
patients may be reluctant to relinquish the treatment
they know for the treatment they dont.
An additional dimension to this initial hesitance
toward transplantation is the fact that kidney transplantation in Mexico typically requires a living donor,
and at least some patients were unwilling to ask a family
member for a kidney. This is a task usually left to
5
For more on widespread cynicism toward government and
the politicization of healthcare in Mexico, see (among others)
Gutmann, 1996; Selby, Murphy, & Lorenzen, 1990; Wilson,
1995.

825

patients themselves, and one which some approached

with ease, while others found emotionally excruciating
(or even impossible). Given the dearth of cadaveric
organ donations, patients in the IMSS and SSA
programs were generally told that they needed at least
a possible living donor just to begin the process of being
considered for a transplantso unwillingness to approach family members became an additional barrier for
at least some. Notably, while patients often balked at a
living donor transplant because of the risk to a family
member, they did not generally express discomfort
(cultural, religious or otherwise) with idea of incorporating a relatives kidney into their own bodies (although
such hybrid anxieties did emerge among some patients
waiting for a cadaveric kidney).
Thus, the sociocultural and political economic realities of kidney disease in Mexico create a somewhat
different context for kidney transplantation. In contrast
with the North American situation, the demand for
transplants had to be created in Guadalajara, and staff
worked quite consciously to draw patients into the
transplant endeavor. Patients had to be educated and
convinced that transplantation was not only feasible,
but desirable as well. The IMSS transplant program, for
instance, held monthly meetings for patients and
families where the mechanics of transplantation and
the bureaucratic processes surrounding it were explained, and the benets of transplantation were
extolled by social workers, physicians and transplanted
patients brought in to give testimonials. However, it
was in the more informal interpersonal interactions that
staff in both hospitals exerted the most persuasive
pressure. Staff remained alert to cases where patients
and/or family members were reluctant, and these were
the people sure to be hailed from the transplant
coordinators ofce as they passed by, called in for a
gurative pulse-taking as staff probed for the sources
of resistance or uncertainty in order to counter them. As
one social worker explained: This isnt something
natural for most patients, you have to help them
understand it, you have to show them why they should
want a transplant. You have to motivate them or they
will never get through it and we wont have any
patients (Magda, SSA). Although all too aware that
transplantation is better understood as the substitution
of one kind of illness for another, staff were matter-offact about motivating patients by throwing their full
persuasive weight behind transplantation in light of the
grim context of dialysis in Mexico and what they termed
the therapeutic benets of hope.
At the heart of these efforts to incite desire and
mobilize motivation for a transplant was a powerful
discourse about the ability of transplantation to restore
patients to a normal life. In the IMSS informational
meetings, for instance, the transplant coordinator often
told patients: With a transplant, you get your kidney

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

and it starts working in your body, and you can have a

normal life again. You can work, have a family, be just
like any other person again (Aurelia). Importantly, the
images central to the idea of normality offered here
are culturally potent and highly gendered images related
to the familyspecically the ability to support a family
(through employment) and to have a family (through
marriage and reproduction). The desire (and expectations) for a transplant thus become keyed to a set of
strongly resonant cultural norms in Mexico in which the
social value of bodies lies not just in health, but in
productivity and reproductivity within the context of the
family as well.6 Within this cultural logic, a truly
successful transplant requires not just individual
survival (perhaps a more typical North American goal),
but reclaiming the role of a full, contributing family
member.
For patients who nd themselves chained to a dialysis
schedule and inhabiting a sick role that often isolates
them from both family and wider society this is a
compelling discourse indeed. Over time, repeated
messages about transplantation and the promise of
resuming a culturally normal (re)productive life
eventually overcamefor many patientsthe initial
uncertainty about transplantation described above.7 As
they were drawn into this discourse of hope for
normalcy, patients began to enter actively into the
lengthy process of being evaluated for a transplant. It
was at this stage that a set of social and institutional
forces was set into motion that committed them even
more deeply to the transplant goal. In part, simply the
social experience of the transplant programs worked
toward this end. For patients profoundly isolated in the
sick role to which their illness consigned them, becoming
part of a community of staff members and other
patients intimately acquainted with their illness was an
immensely seductive experience. As Marta noted: I feel
embraced here. People understand me. The people I see
here every day have become like my familyyI guess it
feels like home in a way (SSA, domestic worker).
Admission into this family, of course, was based on
sharing the goal of a transplant, for that was the goal
binding the community together and providing a shared
language and set of expectations through which to
relate.
In addition to this persuasive feeling of belonging, a
motivating sense of accomplishment was also created
6

See Gutmann (1996) and Finkler (1994) for sensitive studies

of Mexican family and gender norms.
7
Of course not all patients are persuaded and some refuse a
transplant outright (or more subtly by missing appointments)
for reasons related to fear, skepticism or belief in treatments
such as herbs or prayer. Within the context of more generalized
resistance to transplantation, staff regarded such decisions as
lamentable, but not shocking.

through the process of working through the complex

protocol of medical exams required to qualify for a
transplant. Patients sometimes entered the protocol on a
tentative, contingent basis, as did Felipe: I started this
thinking I didnt know if I even wanted a transplant. But
I thought, Ill start it and see what happens (SSA,
mechanic). But over time, the often-arduous experience
of working ones way through the protocol can serve to
increase the desirability of the ultimate goal. Each test
completed, each form successfully nished, can come to
feel like a hurdle successfully vaultedand with each
success, patients often began to feel more invested in the
process and its eventual goal. Mago described her
experience in this way:
I was unsure at rst. But you take each test and you
think, maybe this will be the one where they tell me
no. And then when they dont and you go on to the
next one, you start to have a little hopey Until
toward the end, waiting for the results of those last
tests I could barely stand it. I was so scared that
something would go wrong after everything we had
been through. Thats when I knew how much I
wanted a transplant. Mago (IMSS, housewife)
Thus the very process of seeking a transplant creates a
momentum that can serve to reinforce the preciousness
of the ultimate goal.8 And so, over time, many patients
came to adopt the discourse rst offered up by program
staff about the promise of transplantation, becoming
single-minded in pursuing a new kidney to restore their
normal and (re)productive lives. I cant wait for my
transplanty conded one eager patient, yI am like
broken cup now, without a handle. And with a
transplant I will be whole again and healthy. I will be
able to work and take care of my family (Jaime, IMSS,
waiter). Similarly, Maria, recently married and newly
diagnosed, focused on the hope that she would be able
to give children to her husband through a transplant: I
just want to be a normal woman. I want to be a mother
and a real wife. And thats what a transplant can give
me, so that is why we are going through all this now, so
that we can be a family (IMSS, salesgirl). Driven by
hope, these patients pressed on, working their way
through the protocol process, maintaining before them
the vision of the normal family life they hoped
transplantation would restore.
8
In this cultivation and intensication of desire for transplantation through the process of seeking it there is an afnity
with Franklins study of in vitro fertilization, where the
desperate desire for a baby is produced through the IVF
process itself (Franklin, 1997). Though distinct from the desire
for a (potentially) life-saving organ, there is an important
resonance here with the notion of desperateness that may not
exist prior to the goal, but rather is produced through the
process of seeking it.

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827

This section has traced out some of the social and

institutional processes by which desire for a transplant
was produced in Guadalajara, including the key
discourses not just of health but of normal
(re)productivity which animate that desire. The following section explores what happens when that desire is
nally met and the long-term realities of living with a
kidney transplant unfold.

temporarily unclassied (as they passed through the

ofcial liminality of the post-surgical phase), but more
permanently unclassiable in terms of the formal social
roles they hoped to reclaim.9 The following three
subsections explore this notion of persistent liminality
in terms of the three key elements of the promise for
normalcy held out to pre-transplant patients: health,
productivity and reproductivity.

Reconstructing Health, Redening Normal:

Persistent liminality in transplanted life

Transplanted Health

When patients enter the operating room to receive a

transplant, they submit to what might be usefully
understood as an anticipated, temporary liminal state
(Van Gennep, 1906; Turner, 1969). The concept of
liminality, of course, has been widely used to describe a
state through which individuals must pass as they exit
the normal structure of society in order to re-enter it
again in a new social role. The liminal state is typically
associated with isolation, with the absence (or reversal)
of structured, hierarchical social roles, and with symbols
of death and re-birth. Patients in Guadalajara underwent a kidney transplant, prepared for a post-operative
period of strict physical and social isolation designed to
protect their heavily suppressed immune systems and
newly transplanted kidneys. During this three month
period, these patients knew they would exist betwixt
and between the structures of normal social life,
isolated in a solitary room, unable to work or participate
in family life. Consistent with the classic construction of
liminality, this was understood to be a nite period, a
state through which they expected to pass as they shed
the role of sick patient in order to reclaim the role of
normal (re)productive family member. However, as
transplant recipients in the study ended the ofcial
liminal isolation period and attempted to re-enter
normal life, they often found that the reality of living
with transplantation was not quite what they expected.
Rather, it seemed that for many of these recipients the
liminal period was indenite and open-ended, while the
new social identity they had hoped to claim remained
always precarious and contingent. Rather than reemerging into a fully normal life of health and
(re)productivity, these transplant recipients often found
themselves forced to continue living betwixt and
between the states of health and illness, and
patient (who depends on others) and normal
person (who participates in and contributes to a
family).
The concept of persistent liminality is helpful in
analyzing the social and structural features of the state
in which these kidney transplant recipients nd themselves, for it captures the sense in which the posttransplant condition seemed to render many not just

Transplant recipients in Guadalajara quickly discovered that having a new kidney was not like regaining
their former pre-illness self. To start, the immunosuppressive medications on which they depended carry a
host of side effects ranging from merely bothersome
to medically serious. Effects such as swollen moon
faces, hirsutism and shaking hands could be accompanied by more dangerous effects like soaring cholesterol
levels and heart disease. In addition, recipients soon
learned that a delicate balance must be struck with their
medicationsthey must take enough to counter the
rejection reaction, but too much will end up quemando
(burning outa term used by patients and physicians)
the precious kidney. As a result, recipients must undergo
careful monitoring of medication levels and kidney
function over time, for this is a balance that must be
struck and re-struck as the body adjusts to the
medications and the new organ.
In addition to these immediate effects of the
transplant and medications (many of which do subside
over time), recipients must learn to live with the
realization that the transplant has not restored them to
normal physical health. Transplant recipients, in fact,
remain life-long patients, a reality reinforced on a
daily basis as they managed their battery of medications
and kept up with regular doctors visits and tests to
monitor the transplanted kidney.10 Aside from emphasizing their persistent patienthood, the medications
and monitoring also served as a constant reminder of the
precariousness of their new state of (relative) health.
Recipients were under constant threat of losing the
transplant, and had to adjust to that ever-present
possibility. In Anas words: You always know, on
some level that you can lose it and end up back on
dialysis. But you cant live fearing it all the time, you
9
This concept of persistent liminality is adapted from
Navon and Morags analysis of hormonal therapy experiences
in advanced prostate cancer (2004). See also Little, Jordens,
Paul, Montgomery, & Philipson (1998) for a similar concept of
suspended liminality in the experience of cancer.
10
The scheduling of follow-up visits for transplant recipients
varies substantially, from every 24 weeks for recent recipients
to every 612 months for those several years post-transplant
and/or those in remote areas.

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

have to try to live as if that wont happen (IMSS,

dental hygienist). Here too, a delicate balance must be
struck. If transplanted people live in constant fear of
losing the transplant, then it was hardly worth it after
all. If, however, they become too condent or complacent about the transplant, they risk becoming careless
and thus losing it, as did Victor:
I had my kidney for about ve years, and I was doing
really well, felt great, no problems. Then I started
thinking, Im normal now, everythings good. So I
started smoking a little again, and drinking sometimes too. And nothing happenedy I started
thinking, my kidneys taken to me now, its mine.
I dont need all those pills every day anymore. I
stopped taking my medicines. First I would just skip
a day or two. Nothing would happen, and after a
while, I just stopped taking them at all. I was tired of
them, they made me feel like a sick person when
I didnt think I was one anymore. Then, of course, I
went into rejection and lost the kidney. Victor
(IMSS, factory foreman)
It is this inescapable precariousness that in part kept
transplant recipients suspended in a persistently liminal
state, unable to grasp rmly onto a sense of security and
normality, unable to entirely shed the social role of
patient for that of a healthy person. It also put them
in the paradoxical position of being able to maintain
whatever normality they were able to achieve through
transplantation only by remaining constantly alert to the
fact that they are most decidedly not normal.
While the challenges of learning to live with medication side effects and the constant threat of rejection are
common to transplanted people generally, the institutional structures and political economy of transplantation in Guadalajara rendered the health of these
patients even more precarious in several ways. The
realities of maintaining ongoing access to both specialized medical care and the necessary immunosuppressive
drugs within the Mexican healthcare system posed
serious challenges for many in the study. For wealthy
recipients, of course, access to specialized care could be
obtained by paying for follow-up care in transplant
physicians private clinics, while transplant medications
could simply be paid for or covered through private
insurance. However, for the majority of transplant
recipients whose resources limited them to staying
within one of the government-run systems, the situation
was quite differentand substantially more uncertain.
While space limitations do not allow a full exploration
here, it is important to note that the difculties described
above of simply obtaining a correct diagnosis were
mirrored and amplied as transplant patients were
eventually sent back down to their home clinics (due
to constraints of both capacity and geography), where

they were often managed by physicians with no expertise

in transplantation. The potentially disastrous effects of
this emerged as some patients began to return to the
transplant programs in search of a re-transplant, having
lost the rst due to apparent medical mismanagement.
Recipients transplants were put at further risk by the
difculties often faced in maintaining consistent access
to the enormously expensive immunosuppressive medications. For most recipients in the study maintaining
(or, in the case of SSA patients, gaining) rights to the
IMSS system with its prescription drug coverage was the
most common and effective strategy for assuring access
to medications. Yet, because access to the IMSS system
is tied to paying into the system on an ongoing basis
(either through an employer or directly out-of-pocket),
having drug coverage today is no guarantee of having
coverage tomorrow. Given the difculty for many
transplanted patients of maintaining steady, full-time
employment (an issue explored more fully below), the
threat of losing coverage, losing access to the medication, and thus losing the transplant itself was very real.11
Taken together, the bodily experiences and institutional
realities of maintaining a kidney transplant in Guadalajara thus ensured that many patients could never feel
rmly ensconced in a healthy self, but rather occupied
always a more nebulous territory between the states of
health and illness.
Transplanted Productivity
If transplant recipients found that the promise of
health was not always fullled by the realities of
transplanted life, many also discovered that the goal
of economic productivity, of being able to take care of
their families was similarly difcult to attain. Some
recipients found that they were not really reliably
healthy enough to hold down a regular jobthe
demands of frequent doctors appointments and occasional hospitalizations for rejection rarely endeared
them to employers. Compounding the problem, many
common laborer jobs are closed to transplant recipients
who cannot risk exposure to the kidney-damaging
chemicals often used in factories, machine shops and
agricultural settings. In addition to facing the reality of
their own limitations, many transplant recipients were
also forced to confront others (usually even more
pessimistic) perceptions about what those limitations
11
The practice of providing transplants without guaranteeing
access to specialized care or medications has not (yet) become
an issue of public discussion in Mexico. See Crowley-Matoka
(in press) for further exploration of the political economic
dynamics of this problem as they play out among transplant
programs, pharmaceutical companies, political parties and
patients, as well as for discussion of the media treatment of
transplantation in Mexico.

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

might be. Numerous recipients reported being turned

down by potential employers once their transplanted
status was revealed, as did Ramon: The minute they
nd out you have a transplant, forget about it. They
dont want anything to do with you. They think youre
going to be sick all the time, no matter what you tell
them. They think you wont be able to do the work
(SSA, farm laborer). This reluctance to hire transplant
recipients was likely related in part to the unfamiliarity
of transplantation in wider Mexican society, as well as to
the still hardscrabble economic situation for the working-class in Mexico, where applicants often far outnumber jobs. Under such conditions, employers likely
felt little need to take on the unknown risk of a
transplant recipientespecially (but not only) when the
job required physical labor. Multiple such experiences
drove some to hide their transplanted statusa tactic
sometimes successful if there was no required physical
exam to reveal the tell-tale surgical scar. Another
common strategy was to develop a patient network of
referrals; once a sympathetic or open-minded employer
was identied, the name was often passed rapidly along
to other transplanted patients in search of work.
The difculty of nding work imposed real economic
hardship on some transplant recipients, putting at risk
their ability to support themselves and their familiesas
well as their ability to support the transplant. Struggling
to (re)enter the workforce for many patients was
disastrous in terms of both economic survival and the
self-image of normality in which becoming a productive, working person was so central. Jose, for instance,
describes his own demoralizing efforts to make ends
meet after his transplant:
My old boss wouldnt take me back, and no one else
would hire me with this. So after looking for so long,
I just had to start doing something. Now I just go
from door to door, asking people if they have
anything they need xed... I dont make very much,
and its tiring. Sometimes people look at me like Im
a beggar, but all Im trying to do is work. I keep
thinking, this isnt what I imagined it would be like,
once I wasnt sick anymore. Jose G. (IMSS, itinerant
laborer)
Thus, some transplant recipients nd themselves
occupying a persistently liminal position not simply in
terms of their bodily experiences as they stand poised
between sick and healthy, but in terms of their
relationship to economic life as well. Rather than
gaining full re-entry into a productive role within the
family, many transplanted people nd that they are
forced to scrabble around the edges of economic life,
relying on favors or even lies about their transplanted
status in order to try to make a living. Importantly, these
post-transplant effects (in terms of both social identity

829

and economic survival) are strongly gendered in the

Mexican context where cultural expectations and
political economic structures place the majority of the
burden (and opportunity) for wage earning upon men.
Although women in Mexico are working outside the
home in increasing numbers, they are most often
articulated with the economy in marginal ways through
informal sector work (such as domestic work or selling
foodstuffs on the street), while formal sector jobs with
higher wages and government benets still most
typically go to men (Townsend, Zapata, Rowlands,
Alberti, & Mercado, 1999; Gonzalez de la Rocha, 1994).
Given the structure of healthcare in Mexico, this means
that women are most likely to be dependent upon a male
family members employment for rights to the IMSS
system, while men are more likely to depend upon
nding employment for themselves to gain such rights.
Thus, within the context of transplantation where losing
rights to the IMSS system (and thereby losing access to
specialized care and medications) can be disastrous,
male recipients may be placed at particular risk by the
difculties of maintaining steady employment as a
transplanted person. As we shall see in the following
section on reproductivity however, there are other
dimensions of the promises and realities of living
with transplantation more likely to place women at
particular risk.
Transplanted Reproductivity
Added to the difculties of maintaining the productive
role for many transplant recipients are the difculties for
many of fullling the reproductive role within the family.
Many transplanted people in the study described
unanticipated challenges in forming and/or maintaining
romantic relationships. The experience of illness and
transplantation can put great strain on existing relationships, and while some marriages were strengthened by
the shared experience, others came apart under the
pressure. Adding to the strain of Jose G.s struggle to
nd door-to-door work (recounted above), for instance,
was the fact that his wife left him shortly after he was
transplanted, saying that she simply couldnt cope with
being around a sick man anymorethe fact that she left
after he received the transplant made it a doubly-cruel
blow. In fact, it was not uncommon for couples to
survive the pre-transplant period of illness, only to break
up after the goal of a transplant had nally been
attained. As Jorge explained: It happens a lot, actually.
People think everything will be great with the transplant.
And then it turns out that everything isnt solved.
Sometimes they just wear out from struggling (IMSS,
restaurant owner). Seen here is the effect of the
persistently liminal health of transplantation as it
takes its toll not just on recipients, but on those around
them as well.

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

The situation is equally (if not more) difcult for

people seeking to establish new romantic relationships
after the transplant, for many nd that non-transplanted people are unable or unwilling to see them as
whole, normal people. I cant tell you the number of
times girls tell me they just want to be friends as soon
as they nd out that I have a transplant lamented
Guillermo, who joked publicly about being a ladies
man, but privately confessed that people see him with so
many different girls because they never last once they
learn that he is transplanted (IMSS, university student).
Leticia too, faced similar struggles: I never know when
to tell peopleespecially men. If I say it too soon, I
might not get a chance for them to get to know me. If I
tell them too late, it seems like something to be ashamed
of, because Im hiding it (SSA, secretary). Others
discovered that even if they nd a partner who accepts
their transplanted status, nding a whole family who
does so as well can be even more difcultPat , for
example, found her relationship severely strained by her
boyfriends parents resistance: They always ask him
why he cant nd someone healthy. They are worried
that I wont give them grandchildren (IMSS, domestic
worker). Similar to many recipients experiences with
employers, the unfamiliarity of transplantation is likely
at least partly responsible for this discomfort among
potential romantic partners (and/or their families).
Some recipients resolved this problem by looking for
love among other transplanted peoplein fact, two such
transplanted couples were engaged during the study
period. The problem is signicant enough that transplant program staff were aware of it and even discussed
organizing a Lonely Hearts dance in order to help
transplant recipients meet people. Tellingly, however,
this idea provoked considerable debate about whether it
was appropriate to invite normal people as well as
transplant recipientsa dilemma that highlights the
problematic, persistently liminal status of transplanted
people, even among those most convinced of the benets
of transplantation.
As Pat s difculties with her boyfriends family above
suggests, the importance of childbearing often places
particular strain on relationships for transplant recipients. For male recipients, the challenges to reproductivity are primarily those described above for nding a
romantic partner willing to be with a transplanted
person. Given the difculties of maintaining steady
employment with a transplant and thus meeting the
culturally-dened expectations for the male role, however, this challenge is not insignicant. Nonetheless,
once such a relationship is established, a mans
transplanted status has no particular impact on his
ability to conceive children. For female transplant
recipients, however, the situation is somewhat more
complex. While womens ability to hold down a formal
sector job is less likely to be considered a factor in

marital suitability, their ability (both perceived and real)

to bear children is typically more socially critical. Fears
that transplantation has rendered a woman unable to
have children may make male partners unwilling to
establish or maintain a relationship, particularly under
pressure from families who see no need to risk tying
ones familial future to the fate of someone of uncertain
health. In addition, given that women are more likely to
be dependent on a relationship with a man for access to
the IMSS system, the difculty of establishing romantic
relationships for a female transplant recipient may leave
not just her hopes for a normal social role unfullled,
but her need for healthcare coverage unmet as well.
However, even when they did achieve a romantic
relationship, female recipients in the study were vulnerable to the failure of these reproductive hopes in yet
another way, due to the medical risks of pregnancy for
transplanted women. Childbearing puts added strain on
the transplanted kidney and, particularly for those
women who do not (or cannot) undergo careful
monitoring before and during the pregnancy, can lead
to losing the transplant entirely. Several patients in the
study lost their kidney transplants in this way, including
one woman who subsequently gave up the child she had
so desperately wanted because she was too sick to care
for her. Within this context, the gendered cultural
expectations for the female role within the family can
place transplanted women at risk not only for failing in
the hoped-for normal social role, but for actually
losing the transplant as a result of trying to meet those
expectations. Ultimately, this complex combination of
sociocultural norms and political economic conditions
can thus render male and (particularly) female transplant recipients persistently liminal in their relationship
to reproduction and familial expectations as well.

Conclusion
In the end, this analysis has revealed the always
partial and often painful refashioning of how success
and failure are understood in the context of transplantation, as patients learn to carve out an existence for
themselves in the persistently liminal space left to them
between the roles of sick and healthy, dependent
patient and fully contributing family member. This
paper has highlighted the sociocultural and political
economic conditions in Guadalajara which make it
necessary to incite desire for kidney transplantation
among patients through a powerful discourse promising
normal health and (re)productive life. Following
patients through from the pre- to the post-transplant
phase has revealed how these same sociocultural and
political economic conditions also make those promises
difcult to fulll for many recipients as they face living
with transplantation over the long term. By exploring

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M. Crowley-Matoka / Social Science & Medicine 61 (2005) 821831

both the promise that incites the desire for transplantation, and the real perils that may follow in the wake of
this body- and life-altering biomedical technology, this
paper aims to underscore the importance of more
sustained attention to what happens after patients
receive a transplant. It also provides a compelling and
cautionary example of the potential consequencesfor
patients, medical practitioners and society in general
of failing to examine critically the versions of health
offered up by biomedicine and its interventions.

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