Narratives of Liver Transplantation

雪绒花

Liver Disease, Transplantation, and the Family

Kleinman (1988, p. 185) points out that illness is a profoundly social experience.  This experience involves members of the immediate and extended family, friends, coworkers, and health care professionals, among others.  All six of the respondents spoke of their families in their narratives.  It was clear that families experience transplantation together.  R1 shared the following perspective on how his illness was a social experience:

When you’re sick, as you found out, it’s easier to be the sick person than to be the people around the sick person.  One, they’ve gotta give more because somebody’s giving less.  It’s very awkward at times.  You know, you’re not exactly sure what to do with this person.  And how they’re gonna react.  They can be pretty ornery when they’re sick, or when they’re recovering.  Um, and you don’t know what to do for them.  They feel bad.  So you’re trying to deal with a potential depression, as well as fiery personalities and things like that.  Its tough to be, and you feel bad.  Everybody feels bad.  I felt bad for the people around me.  They felt bad for me.  They felt bad for my wife and kids.

When I asked the respondents about the kinds of problems that they and their families faced throughout the transplantation process, they were reluctant to give specific answers.  General statements like R1's were more common.  R6's wife described problems that they had in getting their family together, and she expressed some anxiety over the financial cost of liver disease and transplantation.  However, the overall reluctance of the respondents to answer questions about the problems that they faced is intriguing.  This may be related to the context of the interview situation.  At the beginning of the interview, the respondents were told that the study was about quality of life and asked to tell their stories.  All of the respondents described some problems in their stories, and in response to the questions, simply alluded to the stories.  I suspect that the respondents did not give exhaustive accounts of the difficulties their families faced during their liver disease and transplantation.

Despite this conspicuous finding, some of the respondents thought that their families’ experiences should be accounted for in the conceptualization of quality of life.  R5 gave some of the details of the difficulties he observed his family having:

And uh, I’ve often said, I think it is much more difficult on the families of the patients than the patients ...  I think it’s got to be hell for the families to watch the patients deteriorate to the point where, you know like I said, they can’t get out of a chair, or they can’t get out of bed.  And that’s all because the liver is not working.  It’s not anything to do with their muscles.  It’s not anything to do with any other part of their body, it’s that big gloppy giant organ that nobody thinks about.  And uh, it’s tough.  It had to be absolute hell on my wife and my parents to see me in a total non-coherent state, especially after my surgery.  Not knowing where I was, babbling, talking all night in the ICU just about nothing.  Keeping everybody up in the ICU probably. [laughs] I don’t remember any of it.  That’s got to be horrible.  Like I said, my wife thinking that, you know, “Ok I’ve got him physically back, but mentally is he ever gonna come back? What’s the use of the surgery if I can’t have him back mentally?”  So.  It uh, the quality of life issue is definitely.  That is the number one reason for doing the transplant.
The quality of life concept is discussed in further detail in the next section.

雪绒花

Recipient Perspectives on the Quality of Life

All research participants were informed several times that the primary focus of the study was to better understand the quality of life of liver transplant survivors.   Toward this end, the respondents were asked several questions about how quality of life should be defined.  As an interviewer I made it clear that these were important questions, and I explained the significance.  In some cases I was not fully satisfied with the way in which the respondents understood and answered the questions, so I asked them again.   Nevertheless, some of the respondents were reluctant to speak socially, and were only interested in giving personal accounts of the quality of life.  Although there exist many similarities in the responses, no response was the same.  Reading the responses should allow professionals and lay persons alike to share in the patient perspective.   Therefore, the responses from all of the participants are presented here:

R1: What comes to mind for me is, I reverted to a life of pre-diagnosis.  Prior to my diagnosis of liver disease.  My life may not be perfect, but it is 99% of what it was prior to being diagnosed five years ago.  My life is truly normal.  Short of not eating grapefruit, and getting up in the morning and then at night and taking my pills, my life is perfectly normal.   I can do what I want to do, and I can be happy with it.  The little things, like, not ever competing in a marathon, or something like that. [emphatically] I will tell you that I have written off anything that I can’t do anymore, and I have a life that is exactly what it was five years ago.
W1: Don’t give the false impression that you could actually run a marathon before the transplant.

R1: No. [laughter] I can do anything.  There is nothing in my life, that I can’t do that I want to do.  I think a good, my measure is, I look at what my life was like before liver disease.  And that is the life I’ve got.  That to me is success.

R2: Well, I think the Toledo Blade defined it well in the story that they did on me a few years ago which headlined, R2 Doubles Volunteer Work Since Transplant, which indicated I was doing more after the transplant than I was before.  And that’s true.  By volunteer, they meant, I already told you that I’m the president of the American Liver Foundation, I am on the board of directors of the Men of Color, which is an HIV/AIDS awareness in the African American Community, I am on the board of the Lucas County Public Health AIDS Awareness program.  I am on the vestry board at church.  I am on the board of directors of the Urban League of Greater Toledo.  I am on the board of directors of Metropolitan Park Productions.  I am on the board of directors of Connections training center, which is a health care training center on the east side.  I am a docent on the Trolley Trots.  I’m swamped out.  I just yesterday was elected to the board of St. Paul’s Community Center.

So, I mean, my Quality of Life is just great as far as I’m concerned.  I’m busy, I’m active, I’m doing something all of the time.  Um, I very rarely even think about my transplant except in my morning prayers.  I don’t talk about it.  I don’t make a point of saying, “oh you know, I had a liver transplant.”  I, get a kick out of people who say, “Oh my god, you shouldn’t be lifting that should you?” “Why?” My surgery was ten years ago.  It’s healed.  I just here the other day.  I picked up a big box, my boss, who happens to be a woman, and she said “I’ll carry that R2 you shouldn’t be carrying that.”

R3: I suspect that it is as varied as anything else.  It was apparent to my wife and I. And as a transplant recipient, I’ve met plenty of people who have had liver transplants.  That, people, a lot of people, who had had chronic illnesses, kind of got used to being sick.  And so, the quality of their life, as what they were satisfied with, and what I would be satisfied with are just [emphatically] polar opposites ... and I worry because I was very fortunate that when I was transplanted I was still in relatively good health.  I was obviously still working full-time.  Now, people have to be so sick, and it takes so long for them to get better, uh, and yet they can, and they do, so it’s changed a lot since I was transplanted.  You know, I don’t know how unfair, you know, we don’t want to make judgements about them, because people are so much sicker now.  By and large I think most people have a very good quality life, a high quality of life.  They’re able to do whatever they want, they tend to be older so maybe they don’t go back to work ... so yeah, it’s very important.  I really feel in general.  Liver transplantation, and liver transplants, you know liver transplantation.  It uh, drastically improves the quality of life.  And there is no reason people who have transplants can’t live a normal life.  And continue to be participating in society, contributing members of society.  Yeah there are some people who aren’t, but they are more the exceptions.

R4: Just, moving ahead.  Just keep moving.  Don’t slow down.  A new beginning for them.  Um, just a way to start over for them I guess.  Not like, a new job, but just another new beginning for them to live.

R5: I think quality of life, you can measure it in several different ways, quality of mental, physical, uh, and that kind of stuff.  In both of my cases, it is definitely better.  Physically, obviously, the surgery has been a success.  And physically, my quality of life has never been better as far as I’m concerned.  Like I said I’ve got more energy than I ever had.  I eat better than I ever have.  You know, I think I’m a healthier person than I ever have been.  At least for a long long time.

Mentally, I, I, think I’m healthier than I have been as well.  My quality of life has increased both mentally and physically.  Mentally because,  I’m able to sort through things, with the frame of reference.  And I’m not stating that everybody should almost die.  Cause that would be kind of a goofy thing to go through for everybody.  In terms of a frame of reference, nothing beats being up against the wall and knowing, they tell you later, “We almost lost you.” and things like that.  Um, to know, in some cases who your real friends are.  To know in some cases what’s important and what’s not important.  I think in that case it is only a person that has had a serious problem, whether it be a disease or whatever.  Not necessarily a transplant patient, but a person who has been very sick, and their family can only really understand how that person has changed or would change based on.  You hear people on those FOX shows always trying to talk about near death experiences, and that kind of stuff.  I wouldn’t necessarily go that far.  But you know, when you are up against that wall, you definitely, you don’t think about it really at that time, it’s later on.
I would say my quality of life both mentally and physically, is far improved over the first 40 years of my life, [laughs] I guess you’d have to say.

I: Can you think of a general concept of what quality of life means for liver disease and transplant patients?

R5: Well, the quality of life for a liver disease patient would be, not, you know.  Once again would be several things, but a quality of life, would be not being tired all of the time, things that the average person takes for granted that are taken away from you.  Like I said, you brush your teeth you start bleeding from your gums and you could bleed to death.  Things like, this thing with the uh, ammonia.  Uh, the quality of life that we all take for granted, when your liver works well.  I mean most people don’t ever think about their liver, because it’s the most forgiving organ in your body.  You can abuse it for years and years and years, and many people abuse it their entire life and it just continues to process out all that crap you put in it and makes all the important things it makes and doesn’t complain.  Basically what they say is if you get to the point where you have problems with your liver, you’re past the point of having those problems fixed.  Because you could have a lot of problems with your liver and never know anything about it.  Simple, it’s amazing simple simple things, like, [pause] not being tired all of the time.  How that quality of life that you take for granted, the average person takes for granted.  Well, I’ll just get a couple extra hours of sleep, and the liver patient can’t, either can’t sleep, or just can’t ever not be tired, and totally worn out.  I don’t know if your mom ever went through that, just absolute, you know, it’s a chore to get out of a chair.

R6: It’s hardly any different than it was before.  The only thing, you realize now what life is.  You can enjoy the birds and the flowers and different things that you didn’t look at before, where now, it means something to you because you could have lost all of that you know.
W6: And a lot of the things we go through.   We think that he wouldn’t have been here to do that.  And,
R6: Yeah, I’ve seen all three of my kids get married.  Now I’ve got three grandkids.

Several different perspectives on the quality of life are represented here.  The responses can be placed into two main categories: restoration to normalcy, and the transcendence of norms.
The first category, the restoration to normalcy,  is best represented by R1.  It is R1's contention that the quality of life for liver transplant recipients be defined with a historical reference to what their life was like without liver disease.  All six of the respondents referred to historical reference points when defining the quality of life concept.   This implies that quality of life is a historical concept.  It seems that the respondents would advocate for the quality of life after a liver transplant to be measured in comparison with what life was like before patients were diagnosed with liver disease, and before they began to have symptoms of liver disease.  Although R4 was so young that he lacks such a historical frame of reference, he contends that quality of life should be defined as a kind of new beginning.  In one way or another five of the six participants defined quality of life after liver transplant as being able to resume normal social roles.   The respondents were most likely to define these roles historically, but they could also be defined in terms of contemporary norms.

R2's definition stands apart from the others because he does not fully recognize the need to resume normal social roles.  In contrast, he sees transplantation as the pathway to the transcendence of normal social roles.  R5 and R6 share in R2's standard for the quality of life.  Life after transplantation is seen as having qualities that were not possible before transplantation.  R6 is the most direct and eloquent when he says that, “you realize now what life is.  You can enjoy the birds and the flowers and different things that you didn’t look at before.”

This second perspective may be related to the degree to which the respondent was ill before receiving the transplant.  R5 and R6 were critically ill at the time of their transplants.  It can be observed that R5 and R6 also had the most distinct and profound statements about how their quality of life has been not merely restored, but enhanced through the process of liver disease and transplantation.  These respondents had very close encounters with death.  It could be hypothesized that the closer a liver disease patient comes to his or her own death, the more likely he or she is to express such an enhancement of the quality of life.

Interestingly, Joralemon and Fujinaga (1996) harshly critiqued a study by Leyendecker et al (1993) which concluded that the psychological well-being of liver transplant recipients is better than that of the healthy population.  The critique was that such a conclusion was counter-intuitive, and was likely to have been polluted by the recipients’ sense of indebtedness to the transplant center staff.  From the personal accounts presented here, it seems that Leyendecker et al’s (1993) counter-intuitive conclusions are at least somewhat correct.  Having spent a great deal of time with many liver transplant recipients, it is my subjective, (and possibly biased) opinion that these individuals actually do represent a level of psychological well-being that is higher than the average for the healthy population.  Although this does not excuse Leyendecker et al from not having attempted to better explain their conclusions, it certainly is a vindication for a component of their research.

These findings have important consequences for quality of life research.  They suggest that the quality of life is a subjective notion held by individuals about their own lives.  It has also been shown that quality of life is a historical concept defined on the basis of shared cultural definitions for functioning in normal social roles.  Quality of life may also transcend the boundaries of normal social roles.  Individuals who have experienced extraordinary processes such as liver disease and transplantation may perceive themselves to be experiencing a quality of life that is unattainable for the majority of the healthy population.
  

雪绒花

Respondent Evaluation of the Interviews

Three questions (Appendix B, Q’s 24-26) were asked at the end of the interview. The intention of these questions was to give the respondents a chance to evaluate the way in which I conducted the interview, and for them to suggest how I might make improvements.  In response to Question #24, three out of the six respondents said that they had participated in studies similar to this one.  R5 took the opportunity to make a subtle comparison:

R5: Yeah, there were some research studies that they did at the clinic.  One of the doctors, it was like a before and after thing.  I don’t know what it was.  You know what.  It was a quality of life study thinking back on it now.   It was a whole bunch of questions to answer.  You know 1,2,3,4, and 5.  Uh, and then they mailed it to you six months after your transplant and you took it again.  Now that you think about it I guess I did do a, kind of a quality of life study.
I: Those are the studies that I’m trying to say aren’t
R5: No, but you’re right.  Because, here’s the question “How are you before?”  “Feel like shit.” “How are you after?”  “Feel great.”  Next question.  That’s, that’s basically how it went you know.
Question #25 asked respondents to suggest further questions to be added.  Three of the six respondents had questions to suggest.  Whenever possible these questions were included as a subset of Question #25.  For example, R3 suggested three questions, all of which were asked of R4, R5, and R6.  The full list of suggested questions had been added to Appendix B.  Whenever a respondent, posed such a question, I also called upon them to answer their own questions.  These responses together with the responses of subsequent interviewees constitute a substantial subset of data.  This data will be discussed in the section “Recommendations for Future Research” (Chapter 5).
In response to Question #26 all six stated that it was alright for me to have asked them all of the interview questions.  Two of the respondents requested that the tape-recorder be turned off during the interview so that they could make comments off the record.  One other respondent took advantage of the time that I used while switching tapes in order to make such comments.  None of the respondents communicated any discomfort with the interview situation.

雪绒花

Reconstructing a Shared Narrative of Liver Disease and Transplantation
  

A Provisional Narrative

The purpose of this chapter is to identify the commonalities in the style, structure, and content of the stories told by the six respondents.  These three components will be examined closely so that the patterns in the data may be used in aggregate to fabricate a provisional shared narrative of liver disease and transplantation.   These three components of the narratives are by no means exhaustive of the methods that could be used to extract meaning.  To some degree the sections overlap.  This is because of the amount of interdependence between the three components.

I use the term provisional to describe the narratives, because a sample of six respondents cannot be seen as statistically representative of the entire population.  Since the respondents are white, male, and middle/upper-middle class, it cannot be assumed that the narrative reconstructed here is completely or in any way similar to the stories told by other liver transplant recipients.  While the status of the narrative reconstructed here is provisional, it nevertheless provides an excellent method for analyzing the data and preparing to deliberate on the theoretical issues posed throughout Chapter 2.
  




Narrative Style

The style used by the six respondents in telling their stories is strikingly similar.  All six of the respondents were very adept at manipulating the tone of their stories.  This was done mostly through the use of paralinguistic devices.  Unfortunately, it is difficult to easily communicate these devices and provide examples on paper, and many of them were lost in the transcription of the interviews.

As mentioned in Chapter 4, emotions were an integral part of the interviews, and in many cases the respondents used stylistic elements to convey the emotions of their experience.   Changes in inflection were frequently used at the ends of words and sentences in order to signal a humorous anecdote.  Although I often found myself smiling or laughing while reading the interview transcripts, outside readers have said that they did not find some of the same anecdotes funny.  This can be attributed in part to the fact that upon reading the transcripts, I have a clear memory of the respondents vocal style, whereas the outside readers had not been exposed to the many paralinguistic elements of the stories.

Pauses were used frequently by the six respondents to communicate matters of significant meaning.  In some cases, pauses were used by the respondents to stable their emotions, and were not intended to convey meaning.   In addition to pauses, words and word elements such as “uh”, “um”, and “ah”, were used frequently.  These words were used by respondents to signal that they were organizing their thoughts in order to continue with the story.  The absence of these words could create confusion, because pauses (the alternative to uh, um, and ah in the spontaneous telling of a story) are often intended to convey meaning.

All six of the respondents also enriched the style of their stories by attempting to relate to the audience, which happened to be me.  An effort was made to incorporate my experiences into their stories, to create a sense of comradery, and to demonstrate the existence of a shared narrative.  For example, R1 used this device when characterizing some of his early experiences being diagnosed with liver disease:

So, I did, and I went in and saw a specialist.  They uh, ah, as you probably found out with your mom, there is a lot of speculation at first.  They reran all of the bloodwork, they ran the hepatitis A and B.
In some instances these attempts to relate to my experience were invitations for me to share anecdotes that would confirm the respondent’s story.  I usually obliged by sharing from some of my own chronicles.
Metaphorical devices were conspicuously absent from most of the narratives.  The only exceptions are the metaphors that some of the respondents borrowed from their physicians to explain the progression of their liver disease.  Here is an example from R1:

That’s really, which is essentially, ah, doctors always use the same example every time, whoever you talk to its, “Imagine a pond, that has no flow through it, the water gets stagnant, bacteria collects.”  That’s essentially what happened in my liver.
The most frequently used stylistic element in the narratives was direct quotations.  Instead of paraphrasing interactions and dialogues, all six of the respondents used direct quotations.  These quotations had tremendous effects on the meaning of many anecdotes.  The group most frequently quoted by the respondents was health care professionals.  Physicians, nurses, and social workers are very important in the lives of liver transplant patients, and their words are correspondingly the most often to be quoted.  Health care professionals were quoted a total of 103 times in the six stories.  The respondents quoted themselves 90 times, and they quoted family, friends, and other individuals 37 times.  As an example, here is a series of quotations from R2's story that takes place before surgery while he was in the operating room:
And we got into surgery and they put me on the operating table and Dr. X. who was the anesthesiologist, who happened to be a lady, came around stood in front of me, took a hold of my hand.  And she said, “Mr. R2, what are you thinking right now?”  And I said, “Well I always wanted to be a lead actor with never any lines to memorize.”  And she said, “Well you’re the star here today, and you don’t have to say a word.”  She said, “Do you want to talk to the doctors?” And I said, “Sure!” ... Then the doctor said, um, they knew that I was always joking and laughing.  So he said, “What kind of music do you like?”  And I said, “HARD ROCK [smiling]” And he said, “Crank it up men.” and they blasted the room with hard rock music, and gave me the shot and I was out. [laughs]
The respondents used quotations like R2's to allow the audience to witness an almost theatrical re-enactment of the original situation.  In some instances, the quotations are intended to enhance the credibility of the respondents accounts.  For example, physicians are often quoted concerning medical information in order to strengthen the respondents contentions with medical authority.  However, the way in which quotations manipulate meanings can also depend on the actual content of the quote.
Suspense was used by all six respondents in their stories.  The use of suspense adds an appealing and dramatic component to the narratives.   It emphasizes the meaning of some events and de-emphasizes the meaning of others.  R5 sets a suspenseful tone for his story in his first sentence:

Ok, I think the story of my, transplant adventure could best be traced back to, right across the street, the Medical College of Ohio as a matter of fact, way back in, 19, hold on here, 1985.
The use of the word “adventure” was unique to R5's story, but all of the respondents used suspense to convey the excitement in their stories.

雪绒花

Narrative Structure

More often suspense is created through the way in which the narratives are structured or formed.  All of the narratives are structured chronologically.  Events are told in the order that they happened.  Some respondents realized that they missed sections, but they clearly informed me of where to insert these sections if they were out of order.

The six narratives are structured much like a drama, or theatrical comedy.  That is to say, the narratives consist of a series of small events or anecdotes that contribute to a dilemma.  The dilemma is then resolved in a dramatic climax.  After this climactic resolution, there are smaller plot twists and an explanation of the current state of affairs.  Although some of the narratives end with this explanation, others include descriptions of the lessons that have been learned from the ordeal, and recommendations for the behavior of the audience.  This structure will be discussed piece by piece in the following paragraphs.

Five of the six respondents began their stories by sharing the circumstances through which they learned that they had liver disease.  R5 had a more elaborate introduction; he described how he contracted liver disease through blood transfusions before telling how he found out that he had liver disease.  Three of the six respondents had symptoms that led them to seek medical care, and three of the respondents found out by chance.  Here are examples of both patterns:

R2: Ok, I guess we can start with uh, on the occasion when I originally found out that I had liver disease.  I was in San Francisco at the time.  You’re gonna get a laugh out of this.  Doing a show, which was the Rocky Horror Show, and it was the show before it became the movie the Rocky Horror Picture Show.  So it was a live stage production first.
I: Excellent, that’s great [excited]
R2: And I was the narrator for the show, and I sat in the audience, and [pauses] I would start falling asleep while I was sitting in the audience a couple of nights, and I didn’t know what was wrong, so they threw my understudy into the show, and I went to the doctor and had the usual blood tests and things, and I found out that I had Hepatitis B.  So, I was in the hospital, critically ill with Hepatitis B at that point, and this was in 1976.
R6: Well, it all started, I was a referee for hockey, and uh, I got hit in the stomach with a guy coming around the net and he hit me like this.  And it started swelling up so I thought maybe I had a rupture or something, so I went to the doctor.  And, come, they didn’t find any rupture so they took some tests, and when they did that, then they found out through the blood tests that my liver was enlarged.
W6: But, you need to say that the hit from the hockey didn’t cause this.  It’s just a fluke that they found that.
The narratives continue on to describe interactions with medical professionals and symptom episodes until they reach the point where the respondents are told by their physicians that they should be evaluated for transplantation.  All six of the respondents incorporated elements of the evaluation process at the same place in their narratives. The evaluation and approval was followed by further suffering from symptoms, sometimes dangerously close to the point of death (as in the case of R5 and R6).
The climax of the narratives is the availability of a donor organ and the actual transplantation of the liver.  This was true for all six of the respondents.   It has already been shown that the climax is emotionally volatile.  R1 described five minute cycles of executing a plan and crying his eyes out.

Contiguous with the surgery is the calm and gradual depiction of the physical rehabilitation process.   The incorporation of this element allows the stories to continue smoothly after the intensity and drama of the surgery.  All of the respondents described their physical rehabilitation.  Four of the six respondents described small twists in the plot.  These most often took the form rejection, pneumonia, and other such complications.  Three of the respondents described what could be viewed as complications that they faced en route to social-psychological rehabilitation.  Here is an example from R5:

So I was released from the hospital I think on about the 18th of November somewheres in there.  I remember the first night, I was in total panic.  Because you get in an environment like there, where you press a button if you have a question, and I’m coming home and I’ve got all of these medicines and all this kind of stuff.  And I fell asleep for a little bit in the lazy boy chair and I woke up in just like a cold sweat panic.  You know, “Am I Ok?” uh, “I don’t know how to do anything.”  You know it’s like, it was kind of a scary first couple days, because, well yeah, they are a phone call away, but they are also a hundred miles away.  You know, and that kind of stuff.  On the other hand, in retrospect, they wouldn’t have kicked me out of there if there were imminent problems.
Um, so for the first few weeks I really, I spent time at home.  The radio station set up a thing where I would do my half of the show from the house, because that’s what I wanted to do.  That would get me back into some form of normalcy.  So the day after I got back home I was back on the air again.

Two of the respondents, R3 and R6 concluded by describing complications that they were currently experiencing as result of their liver disease and transplant.  All of the respondents expressed some sort of gratitude near the end of their stories.  Here is how R3 finished:
We’ve been very fortunate to be moving on, and experiencing my life.    But uh, it’s solidifying my relationships, I spend a lot of time volunteering with um the Liver Foundation.  I became very involved with um, TRIO, which is a support group, for people with transplants.  So, so there’s little things I might have missed, but that’s it.  That’s my story.
Besides the basic structure, there are some further identifiable structural elements worthy of mention.  For example, there was a tendency among the respondents to organize their stories around calendrical events, such as holidays.  Five of the six respondents made use of this organizational tool frequently.  Here are some examples:
W6: We went to see the gastroenterologist here in Toledo.  And he said, “I really think we need to get you to Cleveland to get you evaluated.”  So, on Easter, we went down to Cleveland.
R1: And, then by, right before Christmas, it was the night of the twenty-third, I had a terrible bout of cholangitis.

R3: Around Thanksgiving time, in 1988, five years after I was diagnosed we were told by my um, local doctor that we should possibly be starting to get with a transplant center, it would probably be within the next eighteen months I would need a transplant.


This organization of life events with respect to regular calendrical events may not be limited to the stories of liver transplant recipients.  It is presented here because it was a common occurrence in the narratives.

Research by Good and Good (1994) claims that, in the interview situation, respondents are reading the virtual text of their experience rather than merely telling a story.  They are recreating the narrative based upon memories of actual events.  This distinction is important, and there are structural elements in the six transplant narratives to support it.  At the end of the narratives there is an important transition.  It is a kind of cognitive seam in the story.   The respondents stop reading the virtual text of their experience, and begin to simply tell about their present lives.  They are no longer conjuring up memories; they are simply relating their current status.  The transition can be observed in many ways, such as the speed with which the respondent is speaking, and the verb tenses that they use in their speech.

The structure of the narrative has strong ties to its contents.  For example, the transplant is the climax of the narrative, because the transplant is the important, signature event of the process, not simply because it happens to fall in the middle of the story.
The next section deals with the narrative content.

雪绒花

Narrative Contents

Much of the content of the narratives has already been described in some of the preceding sections.  It would be impossible to describe in detail the specific experiences of all of the research participants.  Instead, their experiences will be compared with a framework for the experience of liver transplantation developed by Wainright (1995).  Table 1 has been adapted from Wainright’s publication (1995, p. 1069).  He interviewed ten liver transplant patients and used a grounded theory approach.  The in-depth, qualitative interviews were analyzed in order to generate concepts and a theoretical framework.  In the article, each of the stages in Table 1 is illustrated with an anecdote from the informants (Wainright, 1995)
It is clear from Table 1 that Wainright does not include the experiences of liver disease.

In contrast, the respondents that I interviewed began their stories with their first experiences of liver disease and not with their decision to have a transplant.  Further,  liver disease experiences were an important component of how the respondents viewed their current situation, and how they defined the quality of life.  I have therefore amended Wainright’s depiction, to include a new first stage and five subsidiary stages (See Table 2).   Sub-stages in the model are not necessarily rigidly ordered.  There are presented in the order that approximates the majority of the interview data.

The stages of experience established by Wainright hold true in the six narratives with only a few minor exceptions.  However, I have added two additional sub-stages in Table 2.  In the “Receiving a Transplant” stage, I have chosen to include a “Waiting” sub-stage.  Wainright’s study was done in Great Britain, and it cannot be assumed that the wait for organs is similar to the wait in the United States.  However, this  research focuses on transplantation in the United States, and waiting is an important part of the experience of liver disease and transplantation.  All six of the respondents either directly addressed, or alluded to the waiting experience.  Even though R5 only waited three months for his transplant, he spends a considerable amount of time describing his wait.  Here is a brief excerpt:

Well anyway, I really wasn’t doing real well apparently.  I remember Halloween came and went, you know.  So basically I was, and then November rolled around. It seemed like I, the joke was, I was going to try to be in every room on the floor you know.  They’d move me from a couple of rooms, and it was kind of funny cause, you really tend to get superstitious.  “We’re around to November already, well, that’d be a new month, so, maybe this will be the lucky month.” and “I’m in a new room.”  And some, one of the nurses had said, this was sort of their lucky room, because, it seems like anybody who goes in there gets called not long after that.  But uh, I remember asking my wife, when she came in the next day, I said, “Am I ever gonna get my transplant?”
In the “Reciprocating” stage, I have added a stage called “Writing the Letter.”  What this refers to is the process of writing a letter of gratitude to the donor family.  This was an important experience in the stories of four out of the six respondents.  The other two respondents hardly mentioned the donor, or donor family.   Letter writing may be a pattern unique to the United States, but I suspect that transplant recipients everywhere take part in this form of reciprocating.  Here are examples of the letter experience from R1 and R2:
R1: I just started working on my letter to the donor family this week.  It’s ironic you’re here.  I couldn’t sleep one night and I got up and wrote that, and I need to type that up.  If they wanted to meet or that, I would let the social worker handle that, I’m sure they’re curious and I’m curious, but I’d let the social worker decide and make sure the family was stable enough.
R2: I wrote a letter.  I started to write it.  I got my transplant in July.  I thought at Christmas time I’d write a letter, and I thought, oh no, this is the family’s first Christmas that she’s not there, and you know, you don’t know anything about the socioeconomic background of the person or you know, I don’t know whether she was a mother, somebody’s daughter, you know.  You just.  And then I thought well I’ll do it at the year.  I started to write it then I thought no this is not a good time.  So I waited till about a year and a half. And wrote, and they, uh, wrote back to the Clinic, no they called the Clinic and said that they had received my letter and they were happy to hear that I was doing well.  And that’s all they said.  But at least they acknowledged the fact that I did thank them and acknowledge them.

Donor and recipient families are generally only allowed to meet under very special circumstances.  Most of the recipients were curious, but overall they knew very little about the donor and the donor family.  Letters are anonymously handled by the transplant center.   The respondents who spoke about writing the letter viewed it is an opportunity to express their gratitude and to provide reassurance for the donor family.  It also seems that for the respondents, writing the letter is a form of coping with having received such a tremendous gift.
The similarities in the style, structure, and content of the narratives is remarkable.  However, with only six respondents the status of the broader cultural narrative that can be inferred from the preceding sections is provisional.  The specific relevance of the similarities will be discussed further in the final chapter.
  

雪绒花

Theoretical Issues

In Chapter 2, several theoretical perspectives were presented and discussed in the context of studying liver disease and transplantation.   Many of the issues raised by the theoretical frameworks are dealt with in the interview data.  The experiences of the respondents and their families were strongly influenced by their contacts with the medical system and its dominant biomedical model.  In their stories, all of the respondents described frequent contacts with various medical institutions.  Four of the six respondents recounted at least one negative experience with the medical system.  Nevertheless, all six respondents expressed strong feelings of respect for medical professionals.

Interestingly, as a result of their experience, (and a component of the ongoing process of reciprocating) all of the respondents were active in community organizations such as the American Liver Foundation.  In addition to their participation in ALF activities, the respondents volunteer their time and support whenever they return to the transplant center.  This reciprocating takes several forms including visiting those hospitalized on the transplant unit, attending support group meetings, and speaking with those being newly evaluated for transplantation.  It would seem that the transplant centers have come to depend on the informal support of their surviving transplant recipients.

The interactions that take place between individuals at different stages of the liver disease and transplantation process may be a factor in the construction of narratives.  Patients on the waiting list have access to the style, structure, and content of transplant narratives through survivors and their family and friends within the transplant community.  It is possible that candidates build and organize their own experiences/stories around the frameworks that are provided by preceding cohorts of transplant survivors and medical professionals.  Such a hypothesis has the potential to help explain the ubiquity of the narratives, and their commonalities.

A further hypothesis would be that the narratives of the transplant community function as a kind of cultural adaptation for coping.  The narratives are told over and over again to a plethora of audiences.  Relating the experience to others could be a form of social readjustment.  When I interviewed the respondents, it was far from being the first time that they told their stories.  For example, my mother has probably told her story several hundred times, not counting the instances when she gives only abbreviated anecdotes.  She was transplanted just six months from the time of this writing.  Telling a transplant narrative –  reading a text of liver disease and transplantation – takes the events of a dramatic individual experience and transforms them into a part of a broader community history.   The patient enables others to be virtual witnesses to actual events, and to share in a personal/family social history.  Just as my mother can tell the story of what my father, sister, myself and other members of my family were doing in the waiting room while she was being transplanted, we can give fairly complete versions of her liver disease and transplantation narrative.

It has been observed that the narratives resemble a drama in style, structure, and content.  This observation merits some speculation.  The obvious assumption is to view the narratives as performances, as creative non-fiction with the intention of making an impression on the audience.  Although such an assumption fascinating, I am drawn toward some alternate explanations.  Narratives of liver disease and transplantation could be seen as collective representations of a somewhat unique individual experience.

The sociocultural model and the sick role concept are valuable tools for understanding liver disease and transplantation.  However, the experiences of the six respondents present some interesting challenges.  Despite having different disease diagnoses, the six respondents had similar experiences with the sick role.  Throughout the course of their chronic liver diseases, the respondents struggled with role conflict.  Social expectations for sick role behavior were incompatible with their own personal expectations for functioning in normal social roles.

One of the key components of sick role status was sometimes denied to the respondents in the study.  I suspect that this pattern would be true for the majority of liver disease patients.  Despite discrete medical diagnoses to the contrary, many outsiders believed that the respondents were responsible for their conditions.  Their sick role status was delegitimized by common societal assumptions that liver disease is caused by alcohol abuse.   Based on the responses in this study there seems to be a stigma associated with liver disease that may not be present for other diseases treated through organ transplantation.

The length of time for which the respondents remained in the sick role after transplantation was extremely varied.  Some of the respondents (notably R2 and R5) began to resume their normal social roles almost immediately after being discharged from the hospital.  Other respondents reported having returned to a normal state of functioning more gradually.  Still others needed several months to overcome post-operative complications and recuperate.  These findings leave considerable room for speculation.  It is my suspicion that there are a number of pertinent factors.  Certainly, the number and intensity of post-operative complications are related to the length of time before a person returns to work.  However, according to R6 (as mentioned in Chapter 4), his decision to continue to collect disability benefits and not return to his pre-operative occupation was not an exclusively medical one.   A variety of social factors, including fears about the loss of disability benefits and health insurance coverage influenced his decision not to return to work.  R6's situation constitutes what might be viewed as a manipulation of the sick role.  Despite being in good health, he chose not to completely relinquish sick role benefits so that he could be assured financial stability and medical care.

The factors that influenced R6's decision were not faced by the other five respondents.  Research on transplant recipients from a variety of socioeconomic backgrounds would be needed in order to show that R6 is not an isolated case.

To some extent the respondents’ narratives may be configured to satisfy the sick role expectations of society.  Although it was a part of their experience, none of the respondents mentioned alcohol or stigma in their stories.  None of the respondents emphasized the difficulty of their recovery.  Quite to the contrary, most of them proudly described their rapid return to normalcy.  The physical recovery is most often a slow and difficult process, but the respondents did not build these events into their stories.  This omission coincides directly with the social requirement that the sick role be relinquished.

To my surprise the respondents did not describe their liver disease as a continuum progressing from excellent health to extremely poor health.  Instead, their stories reflected a traditional sick role conceptualization of the progression of their disease.  The narratives concentrated on specific dates, or turning points, at which the respondents made a kind of symbolic transition from normal social roles to the sick role.  R1 is an excellent example.  Despite the progression of his disease, he was adamant about not letting himself be sick. He denied himself sick role status.  Eventually, in a rather spiritual manner, he decides to accept the sick role.  An excerpt from his story illustrates this phenomena:

I was able to put it off til the last minute.  But I do remember the Sunday afternoon, um, it was two months after I went on the list, I was sitting on the couch here.  And you know just emotionally and spiritually, I said, “I’m ready.  God you do what you do.  I’ve had a good life.  I have no regrets.”  I have had thirty-four better years than most people ever have.  There is nothing really to be said.  You just have to count your blessings and take what you get.  That afternoon [voice trembling] probably made it a lot easier.  Cause I could look ahead and just say.  You know I’ve accomplished what I can, um, and it is not my decision any more.  My only decision is to show up at the hospital when they call, and to do as much as I can to make this a success.  And that is my job at that point, and all their questions are gonna be answered, and I will just let go.

At some point, all of the respondents were forced to recognize the possibility of their own mortality.  The extension of their lives was seen as dependent upon the availability of a donor liver.

The ability of the Health Belief Model (Figure 1) to accurately describe the experience of the respondents is limited.  The perception of the disease process and the seriousness of the pre-transplant condition was consistent.  Liver disease was perceived as being very dangerous.  The respondents were aware that their condition would deteriorate chronically and end in death if the did not receive liver transplants.

Suchman’s description of stages of illness experience provides a better model for examining liver disease and transplantation.  This is true largely because of its elaboration on the sick role concept.  A simplified version of Suchman’s original model is presented in Figure 3.

The respondents experiences were compatible with Suchman’s stages to varying degrees.  For example, R2 progressed through the five stages in exact order, without denial.  However, R5 was diagnosed while still asymptomatic.  He began in stage three, but he did not actually assume the sick role until he experienced severe symptoms several years later.    An intriguing comparison can be made between Suchman’s stages of illness experience (Figure 3) and the stages of liver disease and transplantation presented in Table 2.  Specific stages in Table 2 correspond directly to Suchman’s more general model.  However, the stages of liver disease and transplantation are considerably more developed.  Whereas Suchman describes the processes that individuals go through in their illness experience, Table 2 includes some of the social consequences of individual
experience.  This difference is of paramount importance for the study of illness experiences.  It suggests that the experience of illness is not limited to the individual who happens to be afflicted with a particular condition.  Instead, illness is experienced socially.  Families, health care professionals, coworkers, and others who constitute the audience for illness narratives all share in the illness experience of the afflicted individual.

Another, more macro-level insight is afforded by a comparison of the grounded model of illness experience in Table 2 with Suchman’s more abstract model.  Suchman’s model, although important, may be less significant than it once was.  Suchman’s stages are most applicable to acute illnesses.  The so-called “diseases of civilization” that are common in our current society are chronic illnesses (Strauss, 1984).  The incompatibilities of the respondents stories with Suchman’s model illustrate how the model can fail at describing the stages of chronic illnesses.

As has already been demonstrated, there was no particular requirement that the respondents begin in Stage I.  Chronic liver disease most often progresses gradually over the course of several years.  During this time, patients are constantly in negotiating the stages of Suchman’s model.   For periods upwards of six years, those suffering from liver disease may have several symptoms, and corresponding medical care contacts.  The assumption of the sick role may be denied, accepted, and relinquished several times throughout this process.   Liver disease patients may also enter Stage IV, the dependent-patient role based on severe symptoms.  Medical contacts may temporarily alleviate these symptoms.  Such an alleviation of symptoms could constitute a temporary, or quasi-recovery.  Here is an example of the incongruence of Suchman’s model from R1:

And, then by, right before Christmas, it was the night of the twenty-third, I had a terrible bout of cholangitis.  I was up all night, in the bathroom.  Cholangitis is a lot like the flu, cold sweats, and constantly in and out of the bathroom, either to throw up, or you’ve got diarrhea.  And I didn’t sleep all night, and I was just in a terrible, terrible mood the following day, I turned extremely jaundiced.  Had a very bad Christmas eve with the kids.  It was just due to, my body, I was just run down.  And um, my wife was upset, and I was so sick.  And everybody was stressed.  And when I went up and saw my relatives Christmas day, everybody knew I was sick for a year, but nobody had realized how, what was going to happen.  It was sort of like “Geez, you know what’s wrong with R1.”  Boy you know he really looks terrible.  And, um, I didn’t call the doctor right away, because I got better, I got some sleep, but yet, we were with some friends new years eve, and new years day, and then again I was in and out of the bathroom all of the time, and finally called the doctor right after the holiday and they gave me an antibiotic again.  And here again, three days [later] I felt like superman.   This is cool, this is great.  Things were going really well at work finally.
R1 had several chronic illness episodes that were similar to the one described above.  Despite the reality of his illness and his symptoms, and his decision to seek medical care during illnesses episodes, he was unwilling to assume the sick role.
The disease specific stages of Table 2 are less bound to the traditional parameters of the sick role concept.  The respondents discovered their liver diseases in a variety of ways, and the stages are arranged accordingly.  There is no imperative that sub-stages experienced in order.  Table 2 also includes both physical and psychosocial factors as elements of decision making.
  

雪绒花

Final Recommendations

Several research hypotheses have been developed for systematic testing:

H1: The style, structure, and content of narratives told by liver transplant survivors are likely to be more dramatic than the style, structure, and content of narratives told by liver disease patients who are not candidates for transplantation.
All six of the respondents used drama in telling their stories.  Such drama may be a feature that is unique to those who experience organ transplantation.  To test this hypothesis, the narratives of transplant survivors would have to be compared with the narratives of patients with similar diseases, who were not eligible for transplantation.
H2: Liver disease patients are more likely than those with other chronic diseases to be stigmatized by an association with alcohol abuse.
Five of the six respondents reported encountering some sort of stigma, because of the general assumption that the cause of liver disease is alcohol abuse.  My mother has also encountered the same type of stigma.  Systematic testing is necessary to show that those with other chronic conditions like heart disease, lung disease, and kidney disease do not encounter alcohol related stigma.
H3: Individuals with higher socioeconomic status are more likely than those with lower socioeconomic status to return to work after liver transplantation.
All six of the respondents felt that they were fortunate to adequately handle the financial costs of liver disease and transplantation.  However, they also expressed concern that those of lower socioeconomic status would face more adversity.  Despite having no health restrictions R6 and his wife decided that he would not return to work.  They cited concerns about the loss of health insurance and disability benefits for their decision.  I suspect that there is a relationship between socioeconomic status, and decisions like those made by R6 and his wife.
H4: Liver disease patients feel more of a need to reciprocate, or give back to society, after transplantation than they did before transplantation.
All six of the respondents reported that they participated in transplantion and liver disease community support activities.  Three of the respondents stated that they had made efforts to educate the public about organ donation.  R5 told me several times, that he did not need to win the lottery, because he already had.  The respondents expressed tremendous gratitude for their transplants.  This gratitude could be manifested in their attempts at reciprocation.
H5: Liver transplant survivors will report that they have a more carefree attitude about life after transplantation than they did before transplantation.
In general, the attitudes that the respondents had about life were fairly carefree.  Most of the respondents stated explicitly that they had experienced changes in their emotional responses to adverse life situations.  This hypothesis is interesting, however, research would have to rely upon subjective self-rated of how the respondents attitudes change after transplantation.
H6: Liver transplant survivors are likely to rate higher on measures of quality of life than average healthy adults.
The interview data from the current study, helps to explain the counter-intuitive finding of Leyendecker et al (1993) that liver transplant recipients experience a better quality of life than the healthy population.  Further research is necessary to confirm this explanation.
In addition to the hypotheses, this research has some important conceptual contributions.  Future research should pay close attention to the concepts discussed here.  First, illnesses are experienced socially.  Although the Health Belief Model and Suchman’s stages of illness experience are useful for understanding individual health behavior, they are not capable of describing social consequences and group adaptations to illness.  Also, Suchman’s model is somewhat incompatible with illnesses like chronic liver disease.

The six respondents in this study had very similar demographic backgrounds.  Future work would be well served to include a more diverse sample of individuals.  Such research would also be strengthened by a nationwide sample, incorporating individuals from different regions and transplant centers.

Table 2 “Stages of the Experience of Liver Disease and Transplantation” could be a valuable tool for educating candidates for liver transplantation and their caregivers.  Further research could test the generalizability of these stages to other diseases and life-saving medical interventions.

In the context of liver disease and transplantation, quality of life is a multi-factorial concept.  Quality of life is subjectively defined by individuals based conjointly on their unique histories and their perceptions of norms for physical, mental, and social functioning.  Liver transplant recipients who had close encounters with death are likely to perceive themselves as having transcended established norms.  They have metaphysical  definitions for quality of life that are not easily measured.