LIFE ON THE LIST

LIFE ON THE LIST

THE PHENOMENOLOGY OF WAITING THROUGH THE EYES OF ORGAN TRANSPLANT PATIENTS

By: Justin Titus
Minnesota State University - Moorhead
Dr. Lee Vigilant’s Qualitative Methods in Social Research (SC352)
12/14/2005

Reflexive Statement

Witnessing first hand a loved one’s struggle waiting for an organ, the idea emerged to pursue research on the concept of waiting. The issue of organ donation and organ transplant is rarely examined through the eyes of a sociologist. Most research is dedicated to the issue of who makes the decision to donate their organs and who doesn’t. Many people refer to getting their new organs as their “new life.” With this “new life” many changes in their life ensue. It seems that most of the changes that occur in one’s life are while they are waiting for the specified organ rather than after. Much planning has to go into their situation and how they are going to adapt to this change. The changes they make before their transplant can be crucial to the success of the transplant. These changes are physical, mental and highly emotional.

Introduction

Waiting is something that we all experience on a daily basis, whether it is for the bus, or to return a recent purchase we made, whatever it is, waiting is unavoidable. For most of us, waiting is not a life or death ordeal, but for roughly 88,000 people in the US, it is. Over 88,000 people are currently on the organ transplant waiting list. However, only about 6,000 people per year donate their organs after they have deceased. Approximately one person is added to the list every thirteen minutes, and everyday seventeen people die waiting for their life-saving organ (United Network for Organ Sharing). For these people waiting, life can be a real struggle; it also can be very restrictive on their everyday life and their life may lack a sense of normalcy. Science tells us that after we die, our body parts are useless to us, so why is organ donation so low today in our society? In my opinion, people don’t realize what kind of profound effect their decision to donate can have, on not only the recipient, but also on their family and friends. The contributions of one person can save and/or enhance the lives of up to 50 people (United Network for Organ Sharing).We live in a disposable society where we love to get rid of our used stuff (e.g. garage sales), you would think that people would be jumping at the chance to give ourselves away and also let ourselves and memory live on within someone else.

Literary Review

Organ Donation Myths and Facts

According to the Organ Procurement and Transplantation Network, there is an average of 70 organ transplants every day in the U.S. In 2003, there were 6,455 deceased organ donors and 6,815 living organ donors resulting in over 25,000 organ transplants. While this number seems to be large, there still are a large number of people waiting every day to receive a new organ(s). One of the reasons that organ donation may be low, could be due to some myths that surround the issue of organ donation. According to U.S. Department of Health and Human Services, some of these myths are: If emergency room doctors know you're an organ donor, they won't work as hard to save you. This is false, in fact if you are sick or injured and admitted to the hospital, the number one priority of the doctors is to save your life. Organ donation can only be considered after brain death has been declared by a physician. According to Transweb.org, brain death is defined as the irreversible loss of all functions of the brain. It can be determined in several ways. First - no electrical activity in the brain, Second - no blood flow to the brain, Third - absence of function of all parts of the brain. Some important points to note: A persons' heart can still be beating even after brain death has been pronounced. Also a person who is declared brain dead is considered legally dead. In most states, two physicians must declare a person brain dead before they can proceed with organ donation.

Another myth is that a person’s financial or celebrity status is as important as your medical status while waiting for an organ. But the truth is that when you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information. Another common myths associated with organ donation is by having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor. Now while this is a step in the right direction to being a donor, organ and tissue donation is ultimately discussed with the family members prior to the donation and the decision is left up to them. A lot of people wish to have an open casket funeral when they die and they fear that by donating their organs it will disfigure the body and change the way it looks in a casket. Donated organs are removed surgically, in a routine operation similar to that of an appendix removal. Donation does not change the appearance of the body for the funeral service. The most common myth surrounding organ donation is that a person believes that their religion prohibits organ donation. Truth be told, all major organized religions approve of organ and tissue donation and most consider it an act of charity. When we die, almost everybody wills away their possessions and money, so why wouldn’t people want to give something more than materialistic things and give a person life?

Many people find the topic of organ donation a sensitive subject to discuss even with those close to them. We as humans are intrinsically frightened of the unknown, and the principal unknown is death. Talking about one’s own mortality is not only frightening but for most it is very uncomfortable as well. We can joke about it, but when we really have to discuss it, most of us cannot. We do not see ourselves dying anytime soon and figure it isn’t going to happen for years to come, but death can be as unexpected as most things in life are. The key to increasing the number of organ donors is simply talking about it regularly to ensure that people are informed and comfortable with this topic. Even if we are not terminally ill or in need of an organ, it is important that we inform our family of our wishes, and how we feel for it is ultimately their decision. The tendency seems to be for the topic of organ donation to come up only when we personally know someone who is in need of an organ, or when we are faced with the possibility of donating an organ of our own to a loved one.

For the past 15 years, the number of people on the transplant waiting list has grown steadily from a little over 20,000 in 1990 to over 88,000 today (United Network for Organ Sharing). After speaking to some people who are either waiting themselves or who have already received an organ transplant, there seems to be a consensus that organ donation should just be a mandatory procedure after a person dies. While this would dramatically decrease the number of people waiting for an organ, we as Americans love our freedom of choice. We don’t like being told that we have to do anything. While most people consider organ donation a completely selfless act of charity, we are not compelled to become a donor unless someone close to us is in need. It can be tough for family members to make the decision to donate their loved one’s organs. When a person is brain dead, their heart will most likely still be beating. It can be hard to accept death when you can see the person’s heart is still beating and agreeing to organ donation might be interpreted as giving in to death or accepting of one’s fate. This is why it is vital to discuss this with family members before they reach this point.

Organ Shortage

So why is there such a shortage of organs in the U.S. today? After this research I have come to a couple of conclusions: The first being fear. People with an elevated fear of death are more likely to be non-donors (Besser, Amir and Barkan 2004). Life is very uncertain, and so is death. Although this is something that we all will experience, we can’t possibly know what will happen. Therefore we are fearful even thinking about it as well as any issue that surrounds death. By agreeing to organ donation, it could be interpreted as agreeing to die or admitting one’s mortality. Most of us are too busy living to face our own mortality and we always believe that there will come a time when we can talk about it when it is a foreseen issue, but for most that day never comes, as fear has pushed the issue to the backburner and it is too late.
Another common theme was guilt and/or ignorance. A common response I received after talking with people and asking if they were organ donors was “I should be, but I am not.” This was often followed by the phrase “I’ve never really thought about it.” Honestly, who does think about organ donation? The only people who seriously think about it are the people themselves who are waiting for their new life and their caregivers and people who care about them. Many people don’t seem to understand the organ shortage crisis we are facing today.

According to an article by Avi Besser, (Besser, Amir and Barkan 2004) a person’s perception of their own body image was closely associated with that person’s eagerness to donate their organs. People who considered their body image less important were more likely to be organ donors. This could be because of one’s own conception of self. If someone is highly fixated on body image, or have a strong emotional connection with their own body image, they may perceive organ donation as a loss of one’s own identity or self-image. Many people spend many hours a day building their body to how they want it and giving someone permission to take apart one’s body is anathema to their own lifestyle and personal mentality. There also is a social aspect to this issue. It is common that most people who are organ donors tend to have contact with someone who is in need of an organ. Once again, we don’t realize its importance until we face it personally. There also appears to be some type of social pressure to become a donor if everybody in your circle of friends is too, with anything in life though, we tend to follow the same patterns of our close friends and relatives. The personality of a person who donates can be different than that of a non-donor. Besser’s article also told us that a person who tends to be more authoritarian in nature was less likely to be an organ donor. This characteristic was found to be present more in males than in females. An authoritarian person is used to giving orders or getting their way, death is something that no one can control and admitting one’s mortality can conflict with their personality as not having or being in control.

Societal Response

A recent article by Waldrop, Tamburlin and Thompson discussed and analyzed the results of a recent Gallup Poll. It stated that 85 percent of respondents reported that they were supportive of organ donation and 69 percent of the respondents said they are very likely or somewhat likely to donate. But the fact is that only one-third of those whom are deemed appropriate for organ donation actually do become donors. (Waldrop, Tamburlin, and Thompson 2003: 644) Obviously, not everyone is going to agree on this issue and some people will feel strongly against organ donation, but we need a more informed society because maybe we will be in a situation in which a donated organ is needed in order for us to live. All the people I interviewed agreed that the main thing organ donation needs is more mainstream media coverage and make people more informed. Most people believe that if we can get the word out about the shortage of organs and the excessive amount of people waiting day-to-day for that life changing call we would see a positive reaction in those who wish to be donors.

Methods of Engagement

Death is not something we like to talk to our children about but in order to raise awareness of organ donation, the youth of today need to become conscious of the issue. A good way to bring this issue up is by using the public school forum to facilitate family discussion about organ donation. A recent study was done that looked at the response students received from their parents when they discussed the issue of organ donation. 91 percent of high school students in New York reported a positive response within the family when they brought up the issue. Only nine percent reported receiving a negative response from their parents. (Waldrop, Tamburlin, and Thompson 2003: 649) These numbers show us that perhaps the best time to talk about organ donation is when children are young. We need to plant the seed early and initiate a dialog between parents and children. This way the children also can learn about their parent’s wishes and feelings. 67 percent of the students said the hardest part was either starting the conversation or talking about death itself. The way I see this is that the subject of death is similar to the subject of sex. Just because you don’t talk about it, doesn’t make it non-existent.

Sample, Methods and Ethical Concerns

The data in this article comes from a qualitative study on the life of a person on the list and includes in depth interviews of 6 people, 3 whom have already received an organ transplant, and 3 who are currently on the list. The data was collected during the spring of 2005. The interviews in which the findings are drawn were between one and three hours long and usually held at the respondents’ home. Study participants were asked questions from an interview schedule that contained queries on their experiences with waiting prior to receiving a transplant, their feelings regarding the issue, and coping strategies. Although the interview schedule contained 25 structured questions, most respondents freely expressed their own unique stories, experiences and opinions, and were encouraged to do so. That being said, the conversations were semi-structured and all had the same question in which led the discussion.

Most of the respondents came by way of an organ transplant support group based in the Midwest and others came by word of mouth referrals from other study participants. Also, due to an overwhelming response, surveys of the same 25 questions were handed out to five other participants who were unavailable for in-depth interviews. All of the participants were given a consent form that explicated the purpose of the study, explained confidentially and anonymity protocols such as the exclusion of names and geographic location. All of the participants were advised about the emotional effect that talking about these experiences can bring forth and were told they had the right to absolve themselves from answering any of the questions they did not feel comfortable with.

Results

Samuel Beckett’s tragicomedy entitled “Waiting for Godot” symbolizes the type of struggle that a transplant patient endures. In Waiting for Godot, two men wait in vain by the roadside for someone named Godot. In each act, the two are approached by a boy who gives them the message that although Godot is not coming today "but surely tomorrow". This monotonous and repetitious plot epitomizes the phenomenon of waiting. Waiting can be extremely cumbersome and frustrating, but we wait in hopes that what we are waiting for will be better than anything we will miss while we were waiting. Godot never shows up and the reader never learns who or what exactly Godot is, that is left up for debate. The ending of the play accurately depicts the concept of waiting and hope:

Vladimir: Well, shall we go?
Estragon: Yes, let's go.
They do not move.

Fear and hope were two major themes that revolved around many of the participants’ reaction to being put on the list. The process was very unfamiliar to them and the uncertainty of the unknown ignited their fear. Many didn’t know exactly how to react to the news, most were ambivalent at first. Accepting the notion that one is sick is a very difficult task, but understanding and knowing that there is a cure or treatment for them helps with the initial shock. Many of the participants were devastated that their life had come to this and at first, saw it as an end instead of a new beginning, but many people had comfort in knowing that there was a reason to be hopeful.

“When I was told that I needed a transplant I was surprised. But before I knew that a transplant was possible, life was worse because I was just waiting to die and had no hope.”
Tom, 64 year old Euro-American male.

With the initial shock behind them, one looks to family and friends for support and comfort. The reactions from the family members of the participants were varied. Many of the participants suggested that their family was skeptical of the diagnosis and many requested they get a second opinion, and later became fully supportive of them. Many turned to their family as means of support, but feel that they do not fully understand what they are going through. When dealing with a terminal illness, no one may really understands completely what one is going through as it is a very deep emotional process and experience. A person’s illness can cause a lot of stress on not only the person themselves, but their family too. This undue stress can cause friction between family members and spouses. No one wants to fight this battle alone, but trying to get someone to understand what is exactly going on in their life can be a battle within itself.

“My wife refuses to deal with my illness. She refuses to talk about it and sometimes acts like I am over reacting. My illness was the last nail in our marriages coffin.”
Edward, 55 yr old Euro American male

“My husband gives the least amount of support out of everyone. Life just goes on for him!
Mary, 62 yr old Euro-American female

While family sometimes played a supportive role in their lives, friends were another issue. A few of the participants felt that they were stigmatized and outcast from their friends as a result of their illness. The issue of stigmatization is a delicate and deep one. This is a sub-issue that is worthy of its own research. The social psychology of stigma has revealed that stigma is not just something that is felt or experienced, but stigma has the possibility of producing adverse affects on the individual, like a decrease in health. Understanding the affects of stigma can be difficult and overcoming it can be even harder. Like any illness or medical phenomenon, transplantation is a unique situation and not many people have experienced it and many have a hard time reacting to it and unsure of what to say/do in response to it. Many are sad to see the loss of friends but they find comfort in those who do understand their situation which is a big reason why many people join support groups.

“When my friends found out, they asked questions and then scattered. Many of the friendships I had have left my life. Since I can’t play like them, I have been excluded. Some of my friends question the cost of transplant and medication [and if it] is ethical – especially for someone my age.”
Mary, 62 yr old Euro-American female

When one becomes diagnosed with an illness that requires a transplant, it seems as if that person does their own research and becomes a self-proclaimed expert on the subject matter. While sitting in on a support group meeting, they openly discuss not only which doctors are good but what medications are good and what the drug(s) do specifically to their body. They are all very familiar with all the standards and practices used by the medical field in their situation. They are all familiar with common side-effects and even reactions and results from specific dosages of medicine. They pride themselves on knowing more than the average person and use this information to help others along their journey. They all seem, initially, to be skeptical of the medical community and refuse to accept the doctors’ words of advice until they can verify it themselves. These support groups are extremely helpful to those that attend. They all feel that having this close knit community helps them stay positive and learn more about the transplant process. But most importantly, they have a chance to talk about not only their feelings and emotions but their personal experiences as well.

There is a unique quality to these support groups. These support groups could be interpreted as a gathering of “native experts.” They are quick to initiate someone into the group and each member shares their story openly when they are comfortable enough to do so. The new members are warmly welcomed and everyone shares their opinions and experiences with the new member and informs them on what to expect and other helpful hints that they have learned through their own personal experience. They all become extremely close with each other and become very familiar with each other’s situation, all knowing that the health of anyone of them can deteriorate at any time and they could lose them. They openly talk about how many friends they have lost and who is getting worse. This is a highly emotional group but their camaraderie helps them get through the rough days of losing a fellow member. These groups form a sense of group solidarity and it makes the situation easier to deal with.

“I don’t know where I would be without the support group.
Some of best friends are here!”
- Carol 60 year old Euro American Female

The individuals in these support groups help each other not only with medical issues but other issues as well like financial advice and other daily life issues one faces. Each member of the group, for the most part, has come to terms with their eventual mortality. It is impossible not to think about when each day presents new complications to medications and/or other factors. They realize that just because they are having a good day today, does not mean that tomorrow will be the same. They have seen many people quickly weaken and degenerate even those who are seen as strong and healthy. Life is uncertain and ambiguous and nobody knows it better than these people.

“The support group is great! It gives me a chance to learn from those who are farther along than me, and teach those who are just diagnosed and tell them what to expect. It makes me feel as though I am doing something good with my situation and it leaves me with a more positive outlook on not only my illness, but my life in general.”
Edward, 55 yr old Euro American male

Coping Strategies

With any illness or medical condition, we as humans look for ways to cope with the feelings and emotions that we have, whether they are positive or negative ones we need an outlet for them. Every person has different ways of dealing with the stress and feelings that illness can bring forth. It is necessary that we find an outlet for these feelings as they will help us cope with these unwanted feeling and sometimes they can help us heal. Dealing with the situation head on can be a very tough process, so by finding a way of acknowledging these feelings and coming to terms with them is of vital importance. Some people find support in God and religion, and some find it in their family. These means of support can help a person successfully cope and get through the emotional distress and feelings that are brought about by uncertainty and personal stress. These means of support are seen as the proverbial crutch to them. They are vital to the person remaining positive and it gives the person something to lean on and find comfort in. None of the participants cited one means of support over another.
“My main form of support is Family, Religion, the Support groups and a positive attitude – it truly takes all that support in order to make it through this journey.”
Nancy, 60yrs Euro American Female

“Faith, fright, family and friends all help me through each day. Fight for life and a healthy spirit help you through every moment of the day.”
-Mary, 62 yr old Euro-American female

Many people cited religion as a major factor in coping. Although some were not extremely spiritual before their diagnosis, they claim that by becoming more involved in religion and having a belief system has made them better prepared to deal with their own mortality. Many people feel that creating a relationship with a higher power will not only give them the support they need but also answer some question like “why me” and “where do I go from here?” One respondent stated that her faith in God has helped her tremendously. Her prognosis was bleak when she was diagnosed over 2 years ago, but her situation has gotten better over the last year and she correlates that to her sustaining faith and endless sessions of prayer and attending healing services at the local church. The search for comfort and acceptance seems to be the ultimate goal for transplant patients. Their life has just changed drastically and it is going to be different from here on out so finding a way to accept one’s fate and be comfortable with that is extremely crucial. This is just one of many ways that they refuse to capitulate to their illness and let it get the best of them.

“Every morning I wake up on this side of the grass, I thank God.”
Edward, 55 yr old Euro American male

Remaining positive can be one of the hardest aspects of going through with a transplant. Finding the silver lining on this cloud can be a rather daunting and troublesome task. Through all my interviews and sitting in on support groups, everyone there seems to be in extremely high spirits. I was amazed at how happy and enthusiastic they all were. They all seemed to take pride in the fact that they were alive that day to share that specific moment with their friends. They were all living in the moment. They all looked at life in the big scheme of things and took every day for what it was worth and they all were filled with content and appreciation. This was not what I was expecting to see, as I was expecting to see many people distraught and maybe even some crying, but to my surprise they all seemed to be living their lives to the best and loving it!

There are many fears that a transplant patient has to endure in their journey. Many fear that they will die before they receive the transplant, and after that, they fear that they will die on the table during the incredibly invasive surgery. Timing is a key component to a successful transplant and recovery. Also, knowing that someone else has died and has given you their organs and a second chance at a ‘normal’ life and that is the reason that you are going to live can be a very difficult issue to come to terms with. This emotional issue is one that is openly talked about during the support groups. One starts to question why their life is worth saving. When asked the question on how they feel about knowing that their life is reliant upon another’s’ misfortune, I am greeted with a range of answers. Many don’t go a day without thanking God for the person who gave them life, and some avoid the thought of what happened to get them to where they are just to keep them living their life the way they want. But one emotion is present in all respondents – thankfulness. Many feel an obligation to live a good life and make the donor and their family proud. This can be a very big responsibility. The recipient may feel an overwhelming obligation to their donor to lead a respectable and positive lifestyle. This can be very difficult to judge and even more difficult to convince oneself that one is doing so.

“I am very thankful to the one who gave me my second chance, but I cannot let that control my life and my mind. They gave me life, and I have to live it!”
Edward, 55 yr old Euro American male

Life Changes

In his book The Divided Self: An Existential Study in Sanity and Madness, Psychiatrist Ronald David Laing describes what is called a loss of ontological security. This is interpreted as a loss of being secure in one’s own being. These feelings are derived from being secure in the continuity of order and events and the loss of that. Simply stated, it is a loss of normalcy and insecurity regarding one’s own reality and identity. Transplant patients are very vulnerable to falling victim to losing any sense of ontological security they have due to the fact that they are facing a new situation and their fate and future are now in question. Everything that they have known up to this point is meaningless for the most part. When one questions their own mortality, any sense of what they perceive to be reality can be lost in actual reality and facing it.

When a person is put onto the transplant waiting list, they must adapt to multiple changes in their life. First off, a person’s health becomes their number one priority, if it wasn’t before. They are subject to constant doctor visits and are told what type of lifestyle they can and cannot maintain. A lot of times, this means cutting back or even retiring from work, sometimes much earlier than expected. Work is a vital part to everyone’s life. Work is where we get away from the daily stresses of family and more importantly, where we get our paycheck. Being encouraged to quit or retire can be a difficult decision due to the fact that the person may feel that they are succumbing to their illness. This also means dedicating a lot of time towards doctor visits and seeing different specialists which can mean a lot of traveling and time away from family: this can also be very expensive and add to the already mounting stress.

“I enjoy not working, but being told my health was the reason I had to retire was hard to accept, I fear I am getting worse.”
- Carol 60 yr old Euro American Female

“I still work full time after my transplant. I am one of the fortunate ones though; my employer is great and understands. Most {employers} are not as understanding.
Edward, 55 yr old Euro American male

A lot of people are put on the list not necessarily for their immediate need of the organ, but for they will need it in the near future. It is always possible to refuse an available organ if offered, if someone is healthy enough to wait until they get worse. While this is not recommended for most people due to the fact that finding a perfect match can be few are far between. With that, transplant usually is seen as a last resort and many patients are encouraged to look at other treatment options prior to their transplant knowing that they can usually only help. Many patients become subject to different treatment methods, some experimental drugs and different procedures which can either cure the illness, hinder it, or stop the rapid spread of it. These can also cause side effects to the person which compiled with their already deteriorating health can be extremely painful and troublesome to go through.

“I apply for most trial drugs and treatments available.
I don’t think my health could get much worse so I figure, what’s the harm?!”
- Carol, 60 yr old Euro American Female

According to the Thoracic Transplant Patient Handbook, a handbook made by the University of Minnesota to give their transplant patients in order for them to be more informed on the process and how to prepare for the transplant, during the waiting period, the patient is required to do various sorts of things in order to ensure the forthcoming transplant will be successful. They are required to call in to their doctor at least once a month to update them with their health status and if it has changed in any way. They are also required to have bimonthly blood tests. These are done to be sure that they are in the best possible shape for transplant and to check kidney and liver functions.

One of the most important factors is making sure that the patient has transportation arrangements to the hospital when the organ becomes available. If the patient cannot arrive to the transplant center within two hours using air transportation, it may be required that they temporarily move closer to ensure success of the transplant. This is a big commitment to make and requires almost a complete life change. Not many people can afford to just pack up and move, but when it’s a persons health, it’s hard to not find a way to make it work.
The patient must also be sure that they are able to be reached by either phone or pager at all times. Keeping the lines of communication open is of utmost importance in this situation. A person must also do some pre-preparation for the transplant and the travel involved with it as well. This is done by following a schedule similar to that of a pregnant woman. They must plan for that day when they get the call, and pack a bag of clothes and other accessories to use on their extended stay in the hospital after the transplant. When their transplant coordinator informs them that they are getting close to the top of the list, their life becomes even more restricted. You can never travel more than a half-hour from your home in order to comply with the strict time restraints with organ donation. This can lead to a person feeling very restricted and even more anxious to receive the call. Every time the phone rings, a person never knows if it is that time. While waiting for this new life to give them new freedoms that they haven’t had in a long time, their life can feel extremely sheltered before they receive this new life.

Emotional Response

Waiting for an organ can be extremely emotional. Every emotion imaginable is experienced by these individuals. These emotions can sometimes be a burden to not only the person who is ill, but their family as well. As with any disease or illness, some days are better than others..

“I have had a good life, and for that I am thankful, but now I am scared and anxious. I want to meet my grandchildren someday.”
Carol, 60 yr old Euro American Female

Personal introspection and life reflection are major components of this emotional response. Life’s little subtleties quickly become memorable moments. Many wonder if their life is actually worth saving and others wonder if it isn’t saved by a transplant, what they have got to show for themselves. How does one judge or put a value on life? We all want and try to live our lives the best we can but how does one justify to not only themselves but others that their life is worth saving? This is an issue that can only be dealt with on a personal level as no one can make someone understand this. This is a constant struggle that transplant patients face.

These emotions have to be dealt with either by the individual themselves or released in some way. A person experiences a plethora of emotions from anxiety to gratitude. Many of the respondents reported experiencing bouts of depression as well. No one is really sure about their future and we all hope that we have a lot of life left to live, but just waiting for the chance to live again can be very depressing. Also, knowing that life is waiting for you but not knowing if you have enough life left to reach that point can be very nerve-racking and disheartening.

“I experienced depression many times, especially when suffering some major ‘bumps’ in the road. Also, when I was excluded from social events we used to be invited to, now I wasn’t due to my limitations. That was hard.”
-Mary, 62 yr old Euro-American female

One particular respondent who received a lung transplant about a year ago talked about the change in his emotional well-being and status. He used to be very uptight and he said that he was very uptight. Since his transplant, he has learned patience. Before he got the transplant, he realized that he needed to relax and be more patient if he was going to get through this experience alive. After his transplant, he realized that his lifestyle and mentality before prevented him from actually enjoying life as he was too caught up in what he deems unimportant now. His transplant has changed his life in more than one way. “I have another chance to live, and see what I missed the first time.” From listening to the subtle sounds of life to sitting down with a college student to discuss organ transplantation, “This is what is important!”

Facing Transplantation

The diagnosis of needing a transplant can sometimes be easy to accept reveling in the fact that there is a cure out there for them, but at some point, when that day gets closer, reality sets in and one must face the facts. This can be very stressful to the person needing the transplant. The most common thought that most people had was that if they were going to live long enough to actually receive the transplant. When one is first put on the transplant list, the need for the transplant may be minimal at the time and so the reality of what is going to occur may either be far off in one’s mind or they may choose not to think about the day. Most people put the thought on the backburner of their mind thinking that they will deal with the issue later when it is more prevalent to their life.

“I really wasn’t sure if I was going to live long enough to receive the transplant”
Gregg 63 year old male

When reality sets in, they become most dependent on those closest to them and also on those who have been there before. By putting this issue in the back of their minds, facing the issue head on can be harder than planned. This is the crucial time when they need the most support. Not only is their condition getting worse but the intimidating and daunting future they once dreaded is quickly becoming a reality.

Patience

In religious and spiritual practices, patience is described as a virtue; this is one of the oldest clichés and we all know it is true. For people waiting for an organ transplant, patience is essential to their existence. These people try to continue living as close to a semi-normal life they can, knowing that at any moment the phone could ring and their new life could be waiting on the other line.
In the organ donation community, there is a standard practice that involves calling more than one person for each available organ. That way they can be almost guaranteed that if one person can not take the organ for some reason whether it is medical, size discrepancy, or a time issue, there will be another recipient readily available to ensure that the organ will not go to waste. For those who are not on the receiving end of these organs, this can be frustrating. Their hopes are quickly dashed and they go back to wait. These are called “dry runs.” They follow all the standards and even go so far to get prepped for the surgery. In some rare instances, the patient has even been anesthetized in preparation for the transplant. Most people usually only have to go through one dry run before they receive their organ.

While these dry runs can be very exasperating and time consuming, they do help the patient understand the whole process and they become more familiar with what will happen and thus they are more prepared for the day when they actually will receive theirs. In a sense, it eases the pressure that the process puts on the person, and instead of fearing the entire process, they just want to get it over with and their perception of the whole procedure may change. This takes a lot of time out of ones life, and it can be extremely disheartening and frustrating. In a sense though, it also calms the patient down as well. It would be impossible to not get anxious as nervous when one receives the call, but this cuts down on any uncertainties that the patient may have regarding the procedure. One of the women I interviewed had 4 dry runs before she received her organ. This is very uncommon, but she states that she was “very well-prepared” for the surgery and ready to get the whole thing done, finally!

Stress

Stress was a reoccurring theme throughout all the interviews. Although this was not thoroughly explored or examined, it seems as though stress plays a vital role in the lives of those on the transplant list. It seems to that stress is inevitable in this situation. Stresses range from the obvious health issues to financial and family issues. When one is put on the transplant list, unfortunately, life does not stop for anyone. Family members have to go to work; kids still have to go to school. There is no real way to take a time-out from life’s hectic pace and sort things out piece by piece in order to digest the news thoroughly. The patient is forced to make many changes to his/her life, while their family maintains a normal life for the most part. Stress can cause much undo suffering and can complicate issues further. Stress and patience are two emotions that are seen as opposites when in actuality patience can help stress. No one expects to a transplant patient to come through the whole process emotionally unscathed, this is an absurd notion. It is part of human condition to respond to uncertainty and disturbing news with an emotional response and stress and worry are major ones that everyone can conceptualize. It seems as if the patient experiences the vast amount of their stress in the beginning fazes of their diagnosis. As time goes on, respondents reported more anxiety than stress and that they came to accept whatever fate had in store for them instead of worrying about it. Suffice it to say that time is the ultimate healer.

Quality vs. Quantity

At some point in their time on the list, these patients face the fact that their life is limited on this earth as we all will realize someday. Many find themselves with an underlying overwhelming sense of urgency to live their life to the fullest. The focus on life moves from living longer to living better.

“You want to live…Quality of live is so important, no one wants to suffer. My goal is to enjoy the little things and to do good things for other people and make my donor proud that he saved me. Take time to smell the roses, watch the birds and listen to the laughter of the children. My future is right now today!”
Tom, 64 year old Euro-American male.

Every aspect of life becomes of much more importance than it held before. Every mundane detail in life that average people pass off as ordinary are seen as extraordinary to the one’s who want to experience the most out of life.

“I am very impatient with people who are so busy planning for their tomorrow that they fail to live the moments of today.”
Mary, 62 yr old Euro American female

All the busy days of inattentiveness to nature’s wonders are far behind. Maybe it takes something of this nature in someone’s life for them to truly understand what life is all about.

“I could spend hours just sitting around and bird watching. It is really amazing what you can see if you just open your eyes and lose yourself in nature.”
Richard, 55 yr old Euro American male

Donor Families

After a person receives their transplant and begin the long road to recovery, they are faced with the decision whether to contact their donor family or not. Many donor families’s say that they don’t feel a sense of closure until they receive some type of acknowledgment from the recipient of their deceased loved one’s organ(s). For the most part, transplant recipients are not divulged a lot of information regarding their donor family, usually just the donors’ approximate age and gender. For many recipients, this can be an extremely difficult and emotional task. This is a few excerpts from an actual letter written from a 64 year old male who received a single lung transplant:

“I am alive today because of a decision made by your loved one and your family at a time when you were facing a great loss. If you would have made a different decision, I too may have been lost. Words cannot express how grateful I am and a day does not go by when I am not thinking of you…I do not know your family, but I know you are very special caring people. I do not know your loved one who gave me the gift of life, but I feel their presence with every breath I take. They will finish my journey with me and I hope to make them proud and when it is done, I hope to meet them in a better place and thank them in person.”

Summary

Since the first organ transplant in 1954, (Science Timeline) the world of organ transplantation has progressed and evolved into a wonderful aspect of science that has helped many people to continue living a semi-normal life. Organ donation is something that everyone should consider. Organ donation not only helps the individual in need but their family as well. While the rate of people in need of organs increases at an alarming rate, the list of potential donors remains steady. Something needs to be done in order to accommodate those who are in need. Education is the key to increasing the number of donors in the U.S. Organ donation is a very complicated and emotional process and it requires a lot from the transplant recipient.
The life of a person waiting for an organ transplant is a lot different than one would expect. The life of a person on the transplant list experiences a lot of changes. Many of these changes occur before they even receive their organ. Once a person is placed on the transplant list, their life as they know it will never be the same, everything changes: friends, lifestyle, mentality, as well as emotional status.

Their life involves constant stress and daily clashes with reality telling them life could be over soon. Every person deals with it differently, but by gaining a better understanding of the process and what all is involved can help a person cope and fully grasp this time in their life. The future of organ donation is unknown, but over the last 50 years, we have made immense advancements and who knows what the next 50 years will bring. Life is full of uncertainties, but it is making the best of these uncertainties that determine the quality of the life we live.
“If you have taken good care of your body, why have your organs go to waste? Help someone else! There is a real crisis with a cure. Through my death someone else could live, wouldn’t that be the greatest gift of all?

References:
Beckett, Samuel. (1997). “Waiting for Godot: A Tragicomedy in Two Acts.” New York, NY. Grove Press
Besser, Avi, Marianne Amir and Sharon Barkan. (2004). “Who Signs an Organ Transplant Card?” Personality and Individual Differences, 36, 1709-1723.
Laing, Ronald David. (1965) “The Divided Self: An Existential Study in Sanity and Madness.” Penguin Publishing
Organ Procurement and Transplant Network (OPTN). (2005) Retrieved May 1st 2005 from http://www.optn.org
Transplant and Organ Donation. (2005).Retrieved May 1st 2005, from http://www.transweb.org
United Network for Organ Sharing. (2005) Retrieved April 25th 2005, from http://www.unos.org
Waldrop, Deborah, Judith A Tamburlin and Sanna J Thompson.(2004). “Life and Death Decisions: Using School-Based Health Education to Facilitate Family Discussion about Organ and Tissue Donation.” Death Studies, 28, 645-657.

http://web.mnstate.edu/vigilant/Life on the List.doc