I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on March 02, 2007, 12:17:26 AM

Title: LIFE ON THE LIST
Post by: okarol on March 02, 2007, 12:17:26 AM
I came across this paper. I found it interesting and thought provoking. It's also very long, 29 pages, so I am including
the link for the WORD document to download. If there's a better way to refer to it, please let me know.

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
                       go to ---> http://www.mnstate.edu/vigilant/Life on the List.doc


Title: Re: LIFE ON THE LIST
Post by: angieskidney on March 02, 2007, 12:45:49 AM
That link works better than reading it online!  :thx;
Title: Re: LIFE ON THE LIST
Post by: tamara on March 02, 2007, 02:06:08 AM
I came across this paper. I found it interesting and thought provoking. It's also very long, 29 pages, so I am including
the link for the WORD document to download. If there's a better way to refer to it, please let me know.

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
                       go to ---> http://www.mnstate.edu/vigilant/Life on the List.doc





I think the way it goes is that links may die so save the file to your computer and then add the file by attaching it in additional options.
Title: Re: LIFE ON THE LIST
Post by: angieskidney on March 02, 2007, 02:25:05 AM
Yes but I think there is a size limit. So it would depend how large the doc is. I would say message Epoman and ask him ;)
Title: Re: LIFE ON THE LIST
Post by: livecam on March 04, 2007, 02:53:59 PM
Great article Karol..much of other's experiences it described sounds very familiar.  Waiting and trying to stay well for when that uncertain day comes is tough in many ways.  Thanks for the post.
Title: Re: LIFE ON THE LIST
Post by: Sluff on March 04, 2007, 03:07:25 PM
That is a very comprehensive article. Very well thought out and authored.

Thanks Karol  :thumbup;
Title: Re: LIFE ON THE LIST
Post by: okarol on March 02, 2010, 12:24:39 PM
 :bump;
Title: Re: LIFE ON THE LIST
Post by: Sunny on March 02, 2010, 01:56:38 PM
I've never seen this article before. Thanks.
One thing I noted is everybody in the article suffereing from kidney failure is old.
So if they are feeling this way and they have at least reached a ripe old age, can you imagine what it must be like for someone young?
Title: Re: LIFE ON THE LIST
Post by: okarol on March 03, 2010, 10:58:16 AM

I have attached a copy of the article here.
Title: Re: LIFE ON THE LIST
Post by: Lisa on March 30, 2010, 05:21:01 PM
For some reason I still cannot open this file.  Is there another way for me to get this article?  Thanks!
Title: Re: LIFE ON THE LIST
Post by: okarol on March 30, 2010, 05:56:43 PM

Maybe I can email it to you - let me know.
Title: Re: LIFE ON THE LIST
Post by: tyefly on March 30, 2010, 07:12:56 PM
Please email it to me Karol.....thx
Title: Re: LIFE ON THE LIST
Post by: robinj2 on May 07, 2013, 01:16:28 PM
Hi

This weekend i just received yet another call for a kidney.  I didn't receive and was wondering if anyone had some advice on how to deal with repeat calls and letdowns.  I was listed in the fall of 2008.  I am in the Northeast and at the time the wait for my blood group was 2 years.  4 1/2 years later, I am still waiting. 

Thanks
JR
Title: Re: LIFE ON THE LIST
Post by: MooseMom on May 07, 2013, 01:36:16 PM
Hi

This weekend i just received yet another call for a kidney.  I didn't receive and was wondering if anyone had some advice on how to deal with repeat calls and letdowns.  I was listed in the fall of 2008.  I am in the Northeast and at the time the wait for my blood group was 2 years.  4 1/2 years later, I am still waiting. 

Thanks
JR

I always told myself that if someone else got the kidney, then that meant that it was a better match for that recipient than it was for me.  I want the kidney that is better for ME than it is for that someone else.
Title: Re: LIFE ON THE LIST
Post by: nholleger on May 18, 2013, 08:07:59 PM
Hi

This weekend i just received yet another call for a kidney.  I didn't receive and was wondering if anyone had some advice on how to deal with repeat calls and letdowns.  I was listed in the fall of 2008.  I am in the Northeast and at the time the wait for my blood group was 2 years.  4 1/2 years later, I am still waiting. 

Thanks
JR

I got my first call on May 7th as well.  I waited a total of 30 hours before I got the final call that I didn't get the kidney.  Advise....got none.  It is a long, emotional wait.  If I figure it out I will share. :banghead;
Title: Re: LIFE ON THE LIST
Post by: iolaire on June 25, 2014, 05:08:30 AM
Random comments on not matching/missing/bad offers related to the transplant call
I find the Kidney transplant list phone calls much more stressful than dialysis.  Most of the stress is when you get a call and you’re trying to figure out if it will work out or not.  To date I’ve received three calls and each one has its own stress point. 

Call 1, over Thanksgiving 10 PM at night, we were on Vacation in Cabo San Lucas Mexico. I checked our flight options and it seemed like we could get home so I called them back and started the match process. I was about six people down but due to the holidays they included me, donor was high risk and in the 30’s, high risk meant drug, IV drug, or unprotected sex, since they test everything I’m fine with that.   That night was EXTREMELY stressful, I could not get to sleep and tossed and turned until the call came in at about 2 am that it was not a good match.  The next week I was in the hospital due to internal bleeding from an ulcer, which I have to believe was aggravated by the stress waiting for the match results!  And well at the hospital they decided it was time for me to start dialysis.

Call 2, Mid May, I was at work.  I was the alternate, but the donor was in 50’s and a diabetic with creatinine at about 1.8. I said do the match anyway since I didn’t really know what that meant and then called my nephrologist.    After about an hour my nephrologist called back and said diffidently wait for a healthier donor with a kidney that will last longer.  The upside is I was told the person after me was elderly and getting close to ageing out on a kidney donation so maybe that person got the kidney and would be quite happy with a less pristine kidney.

Call 3, last night 2:30 am, well I slept and our Comcast internet & Vonage phone was out, so I missed the call!  They said it was a rush situation because the kidneys were already out, and if I did not call back within 15 minutes they would pass on me.  I found the message when I got up at 6:30.  The good news is it sounds like I’m no longer an alternate, but it sucks to miss that one.
Title: Re: LIFE ON THE LIST - THROUGH THE EYES OF ORGAN TRANSPLANT PATIENTS
Post by: okarol on June 25, 2014, 08:35:13 PM
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
Title: Re: LIFE ON THE LIST
Post by: Whamo on July 26, 2017, 03:03:41 PM
 :yahoo;  Yesterday the transplant coordinator said I'm just about ready to be put on the list.  Yahoo, Mountain Dew.   I'm six years into a ten year waiting list, but I'll take any kidney available so I might get one quicker.  Once I'm sure I have the greenlight I'm going to start advertising in search of a donor.  I read about a guy that put it on his car, and he picked up a kidney that way.  I might try that with a photo of my Army days and a brief pitch. 
Title: Re: LIFE ON THE LIST
Post by: iolaire on July 26, 2017, 03:17:23 PM
:yahoo;  Yesterday the transplant coordinator said I'm just about ready to be put on the list.  Yahoo, Mountain Dew.   I'm six years into a ten year waiting list, but I'll take any kidney available so I might get one quicker.  Once I'm sure I have the greenlight I'm going to start advertising in search of a donor.  I read about a guy that put it on his car, and he picked up a kidney that way.  I might try that with a photo of my Army days and a brief pitch.
Congratulations! It does feel like some subset of people who market their needs find willing donors.  No harm in playing up your service.
Title: Re: LIFE ON THE LIST
Post by: smartcookie on July 27, 2017, 08:27:54 AM
I am excited for you, Whamo!  I think advertising is a good way to go!
Title: Re: LIFE ON THE LIST
Post by: okarol on August 08, 2017, 11:38:36 PM
:yahoo;  Yesterday the transplant coordinator said I'm just about ready to be put on the list.  Yahoo, Mountain Dew.   I'm six years into a ten year waiting list, but I'll take any kidney available so I might get one quicker.  Once I'm sure I have the greenlight I'm going to start advertising in search of a donor.  I read about a guy that put it on his car, and he picked up a kidney that way.  I might try that with a photo of my Army days and a brief pitch.

We wrote on the back of our cars and people would take a photo and tweet it. It got the attention of the local news and we had lots of people tested for Jenna. Good luck!
https://www.today.com/parents/los-angeles-mom-paints-car-search-kidney-donor-save-daughters-t48186
Title: Re: LIFE ON THE LIST
Post by: Tora66 on August 18, 2017, 05:59:50 PM
I'll be on the list four years in Oct. To tell the truth I'm getting a little restless. Some days (most) it seems like the day will never come. Only one call nearly one year ago,put me pretty close, I actually went to the hospital and prepared for surgery. The person ahead of me needed both kidneys in the end (the donor was a small child--blessings). I know I shouldn't complain because a lot of ppl have waited longer.
Title: Re: LIFE ON THE LIST
Post by: smartcookie on August 21, 2017, 07:16:35 AM
Quote
Four years is a long time to wait.  But hang in there!  It will be so worth it in the end! 
Five years here, on temporary hold waiting for a cardiology consult to update some findings.   
Title: Re: LIFE ON THE LIST
Post by: iolaire on August 21, 2017, 08:02:45 AM
We wrote on the back of our cars and people would take a photo and tweet it. It got the attention of the local news and we had lots of people tested for Jenna. Good luck!
https://www.today.com/parents/los-angeles-mom-paints-car-search-kidney-donor-save-daughters-t48186
Does the program try to keep the people tested who don't match and pivot them to other transplant patients?  I'm just wondering.  It would nice if there was some program which could try to retain those possible donors and leverage them for other people.

I'll be on the list four years in Oct. To tell the truth I'm getting a little restless. Some days (most) it seems like the day will never come. Only one call nearly one year ago,put me pretty close, I actually went to the hospital and prepared for surgery. The person ahead of me needed both kidneys in the end (the donor was a small child--blessings). I know I shouldn't complain because a lot of ppl have waited longer.

All that I can say is yes it gets to a point where you are restless, but once the time comes it fly's (after you are done waiting in the hospital for the surgery to start). 

I was listed almost six years, my first hospital INOVA called me as low level alternates (#4 etc) fairly regularly then I transferred to GW and received fewer calls until the call where they had already done a computer match and decided the kidney was for me pending it looked ok.  Honestly I think now I preferred to get less calls.  Receiving calls regularly made me fell I was close to a transplant for the three+ years I was on dialysis.  I might have made other care choices had I not felt I was close to getting a kidney.  For example I always felt PD would be good, or home HD, yet it felt close so I was ok for clinic until the time came.  And I probably would have tried to start cannulating myself but I didn't have the drive as it felt close to a transplant.
Title: Re: LIFE ON THE LIST
Post by: Tora66 on September 06, 2017, 08:09:09 AM
 :Thank you, Iolaire, for the encouragement. Hope you continue to tribe with your new kidney. I know you must be pretty excited about your upcoming trip to Japan!
Title: Re: LIFE ON THE LIST
Post by: okarol on October 07, 2017, 11:37:34 PM

We wrote on the back of our cars and people would take a photo and tweet it. It got the attention of the local news and we had lots of people tested for Jenna. Good luck!
https://www.today.com/parents/los-angeles-mom-paints-car-search-kidney-donor-save-daughters-t48186
Does the program try to keep the people tested who don't match and pivot them to other transplant patients?  I'm just wondering.  It would nice if there was some program which could try to retain those possible donors and leverage them for other people.
There's actually a line that the coordinators have to be cautious of crossing so as not to be accused of influencing or persuading a donor to test for someone else. There was one sentence in the letter that potential donor's got, sent by the transplant team when they were found to be unsuitable for Jenna, that said that they could learn more about donating to someone else, but it was buried in the paragraph. We know that 3 people went on to donate after not being a match for Jenna, and another man will be donating to another young woman we know from facebook. Other people signed up for the National Kidney Registry to be matched in a pool. I believe our efforts helped a few people find donors. I wish more of them could donate.
Title: Re: LIFE ON THE LIST
Post by: iolaire on October 08, 2017, 04:05:35 AM
@okarol thanks for the details
Title: Re: LIFE ON THE LIST
Post by: okarol on October 08, 2017, 11:42:02 AM
 :2thumbsup;
Title: Re: LIFE ON THE LIST
Post by: Tora66 on October 28, 2017, 02:50:46 PM
I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer! Why can’t she tell them? My daughter has already started testing by going to a local hospital. The coordinator says getting the test done won’t matter until the team takes action, I’m fed up! I’ve already decided to multi list and I’m getting documents together to get listed at an Idaho facility. It’s a shame I have to go so far because I live in the Tacoma/Seattle area.
Title: Re: LIFE ON THE LIST
Post by: iolaire on October 28, 2017, 07:12:51 PM
I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer!

That doesn't sound right.  Shouldn't your transplant coordinator help make this happen? Maybe ask your coordinator who handles complaints?  Ask if the hospital has an ombudsman or something like that?














Sp mod Cas
Title: Re: LIFE ON THE LIST
Post by: SooMK on October 30, 2017, 10:24:21 AM
Tora66--My center had the medical form that is required to be a donor downloadable on their website. Perhaps your center does too? That might be able to get things rolling since phone calls aren't getting anywhere. I hope things start happening for you soon!
Title: Re: LIFE ON THE LIST
Post by: okarol on November 17, 2017, 11:36:08 PM
I need help. My daughter is interested in being a live donor forme. She has made several calls to my transplant center, but they have not responded. I called my transplant coordinator and she just told we have to contact the transplant team. They won’t answer! Why can’t she tell them? My daughter has already started testing by going to a local hospital. The coordinator says getting the test done won’t matter until the team takes action, I’m fed up! I’ve already decided to multi list and I’m getting documents together to get listed at an Idaho facility. It’s a shame I have to go so far because I live in the Tacoma/Seattle area.

For Jenna's first transplant I waited months for them to call me back. It turns out they "were between coordinators" so our info sat on an empty desk. It makes me so mad still, because she went from pediatric to adult during that time and her status changed. I would call the director of that department and ask for help. Multi-listing is a good idea.
Title: Re: LIFE ON THE LIST
Post by: charlesc on September 06, 2020, 07:26:17 PM
I was transplanted 2 weeks ago with a cadaver kidney. I was on the list for one month short of 7 years.Fortunately I never had to go on dialysis, to me this was a HUGE deal as I did all and I mean all that I could to avoid Dialysis. I hasten to add that this is what I did and it worked for me, YMMV.
I followed the Renal Diet for 17 years doubling down on it for the 7 years on the list. In my estimation and that of several of my phsicians controlling my POTASIUM is what did the deal for me. For the 7 years on the list I requsted that a full Renal Panel be done EVERY MONTH and I would log the potasium ,
Creatinine, GFR, BUN, Anion Gap, PTH, and Phosporus in a spiral book with every visit to ever Dr. , telephone call and what occurred or was discussed.Also every med. taken start to finish. In other words all that was occuring. I cannot stress how useful this info was/is.
As soon as i received each test result I would compare to prior and determine what should be done. I would consult with my phy. and impliment the result.
THIS WAS MOSTLY DIET CHANGES.
The Renal diet is called the T diet for terrible but for me it was not. Just avoid the high pot. foods and if that is all there is just eat a very moderate amount.
All those years these foods just did not make it into our home, such as: potatoes, chips with potatoes, beans, citrus of any type, peanut butter, nuts of any type, cut way back on milk and milk products such as Ice cream, for me that my friends was a biggy but one does what one must to stay alive.
My wife was scruplous in picking out fruit drinks with low pot. NO dark sodas at all.
She watched canned goods with an eagle eye same with cold cerial, always corn based and no whole grains. To add a bit of taste to this I would on occasion sprinkle a bit of Raisin Bran to give a little body and taste but just a bit and always with minimum milk.
As my one kidney, lost one at 6 years old to a congenital problem in the ureter, declined in function over the period my nephrologist would constantly change and tweak the meds. a number of which were supplements and vitamins.
A few day befor I got THE CALL, my Creatinine was 6.5; GFR 7.6 (which put me about 4 months from failure at the rate of decline,Pot.5.4; Bun 79.
Phos 5.3 and the list goes on, I was on a phosporus binder and that helped.

When the call came at 7 am on Saturday, I did not ask many questions though I had researched them all over the years. I had high confidence in the hospital that I was using for the past 17 years taking care of my kidney. I did as if the donor was still alive, no he/she had flat lined and the organs were being kept alive by machine in the body. Asked if it was a good kidney and she said First Class.
I had been talking to them for so many years they knew my situation so I relied on their judgement, also knowing that this hospital ALWAYS TAKE THE MOST CONSERVATIVE APPROACH. Maybe sometime too conservative but that is a topic for another day.
They were harvesting both kidneys and the liver. We drove 120 miles to the hospital and all was ready for me, went directly to my room no registration, nothing and they started the testing, I was taken into the OR at 5:30 pm Sat. nt.
The kideny woke up very quickly and I now have nubers that I have not seen in over 20 years.
Will be in at home quarantine for 3 mos. with all my meds! They do a great job of training us for this period and provide all that we will require, even blood pressur mach, but of course we have one. We are in daily contact with the trans. team by smart phone to post my vitals and such and get changes in the meds.(changes are often made daily) I take about 50 pills per day at exact times. It is a LOT OF WORK, BOOKKEEPING for my wife.I hope that all of you have a VERY COMPETETENT PARTNER who is willing to engage in all of the grunt work.

The isolation is MANDATORY if you want to keep the organ working and not get infection. I actually know someone who did not abide by the protocals and died not long after the trans.with infection. I am on large doses of 3 anti rejection and anti infection  drugs so that is why the quarantine.I have posted a sign on my front door to this effect, it did not come from the hospital but from a freind who got a kidney AND a liver years ago and is doing great.

 After the surgury my wife brought a BANANA  to me and she took a pic. of me eating my first one in 17 years. Oh HAPPY DAY. Today I actually had banana pudding, wow.
Of couse if anyone has any question please let me know, as they say, been there done that. None may work for you but this worked for me.
Good luck and dont dispair.
CCC

p.s. In Louisiana there is an agency to which we will post a letter to the unknown donor family, the agency forwards to them and then the family may contact us if they wish. I would certainly like to thank them profusely for being so thoughtful and generous. It is just a shame that they lost a love one but , at least 3 are living as a result.
Title: Re: LIFE ON THE LIST
Post by: iolaire on September 06, 2020, 08:08:15 PM
Congratulations charlesc!
Title: Re: LIFE ON THE LIST
Post by: charlesc on September 07, 2020, 05:44:24 AM
When my wife read my post, she mentioned that I left out one important detail, I am 77 years old and otherwise in good health. We exercise regularly and have led our senior exercise class for years. Any thing to keep one strong, strong enough to tolerate the stress of ESRD and or dialysis on our bodies.
I have been blessed.
Good luck all and keep your eye on the prize.
CCC
Title: Re: LIFE ON THE LIST
Post by: MooseMom on September 07, 2020, 07:57:41 AM
What a thrilling post to read, charlesc.  At long last, you have a chance at a "normal life", although "normal" these days is anything but!

You've made a very important point by impressing how important it is to keep meticulous records.  I still have copies of my lab results from my very first encounter with my neph in 2003 which showed that my renal function had deteriorated since first being diagnosed with fsgs in 1992.

I had to follow the pre-renal diet you've described for 8 years, and yes, it is terrible.  All of those "healthy" foods are like poison to us.  Like you, I didn't have a potato or a banana or many other things for all of those years.  It always seemed odd to me that a small glass of red wine wasn't as potentially harmful as a small glass of milk.

The fact that you had worked so very hard to stay healthy and in good shape certainly has served you well! 

My heartiest congratulations to you AND to your wife.  Her life has been impacted, too, and she obviously played a huge role in making sure your diet was a renally healthy one.  That's a lot of hard work.
Title: Re: LIFE ON THE LIST
Post by: SooMK on September 08, 2020, 04:27:31 PM
I'm so glad you received your kidney and it's obvious it has found a good home. You are so fortunate to have someone who is such a supportive partner. I know you will treasure every re-discovered experience that your new kidney can offer. Enjoy!
Title: Re: LIFE ON THE LIST--- ------Pill taking regimen
Post by: charlesc on September 11, 2020, 10:20:10 AM
Since the transplant the pill taking has begun big time. 18-20 or so at 8 am more at 10 and 2 then another 18 or so at 8 with a few more in between.
That can get some difficult to swallow.
I recalled a suggestion by a Chinese friend who explained to me that Chinese usually drink hot tea with meals or warm water to aid in digestion.

I tried it and it works----like gang busters.So much easier to get them down. No more cold water for me. After I get the bunch down I will drink a full glass of water. I can actually feel them dissolving in my throat.

CCC :yahoo;
Title: Re: LIFE ON THE LIST
Post by: Cupcake on September 11, 2020, 10:27:32 AM
It gets easier and number of pills decreases somewhat over time. Best thing I did was get a 7 day pill sorter tower that has one tray per day, 4 time periods per day. At first it took me half an hour once a week to set up ( I think my brain was foggy from surgery/high dose of steroids at first) but now its just a few minutes. I count pills in each little square as I slide them into the tower so I know if I've missed any. That way only once a week do I need to really pay attention! And it was just too depressing to look at that shoebox full of pills, so in the closet it goes. Almost 2 years post transplant and I've only forgotten one dose and it wasn't an important one. Best of luck, you sound like you are doing great!
Title: Re: LIFE ON THE LIST
Post by: iolaire on September 11, 2020, 11:10:25 AM
I really like this pill organizer - which has 7 daily pill cases with four pill slots per day, much I bought another set this year for backup and so I can fill more than two weeks worth of pills at a time, but its now out of stock.
https://www.amazon.com/gp/product/B01N4IDOH6

This seems similar:
https://www.amazon.com/dp/B0189GHEDW/

I liked it because it had four slots per day and I could carry it with me when I went to work.  I used the larger pill cases for my early am and late pm pills.  Now that I'm down to 4 am / breakfast / 4pm pills I still use the cases for the breakfast and 4 pm pills as that covers the workday - I have breakfast at work, now at my desk at home.  Now I can put two days worth of pill into the four slots.  For the 4am pills I still have a single row pill case to hold those by the bed.  I've never really used the frame that holds all seven days, except for when I travel.  Now three years out I fill up two weeks of pill cases and keep them in a slider zip lock bag and bring what I need for the workday down to the desk each week.

For the longest time I used key envelops for my meds when I'm out and about, but I finally ran out of those and moved to these cheap plastic bags that will not last as long but clearly show what is in the bag:
https://www.amazon.com/gp/product/B001FVG5QQ
Title: Re: LIFE ON THE LIST
Post by: MooseMom on September 11, 2020, 01:56:01 PM
Yeah, the number of pills you have to swallow can be tiresome, especially in the first three months post tx.  Usually after that initial period, you can come off of a lot of them.

By the time you add vitamin and/or mineral supplements, those pill boxes get a'rattlin'!

And it's not like we necessarily have a lot of different medications, rather, we have to take them so often.  I mean, I take 3x1mg tac twice a day, so right there, that's 6 pills.

I've got all sorts of different kinds of pill boxes that I use depending upon my travel needs.  If I'm going out for the day, I just shove the whole day's worth into one of those little plastic bags you can buy in packets of 50.  After 8 years, I know what to take and when, and I recognize all of the pills, so I don't need four different bags for 4 times of the day.  I find these to be especially useful if I'm taking an overseas flight (not doing that much these days!).

I have several of those multi-colored pill "towers" that I use exclusively for summer hols because, well, because they look festive.  LOL!

Small price to pay, I think!
Title: Re: LIFE ON THE LIST
Post by: Simon Dog on September 11, 2020, 03:52:49 PM
I have one of these on my keychain with a two day supply of Tacro and Mycophenolate just in case I get stranded or don't make it home in time for my evening dose.  It's waterproof enough that the pills were perfectly dry after a wash/dry cycle, but I evacuated them to refuse disposal because of the heat that process subjected them to.   The case is sectional and I only use 2 of three so it's shorter than the size of the complete unit.

https://www.amazon.com/Portable-Opret-Compartment-Waterproof-Container/dp/B07D6KV6FV

The transplant pharmacist sent me home with a 7 day/4 compartment per day pill organizer so I can set up my dosages once a week, as well as tweezers for moving pills around.   The tweezers were an exact match for those in a disposable suture removal kit.
Title: Re: Pill case
Post by: charlesc on September 11, 2020, 07:10:34 PM
Ochsner Hospital gave us a ton of supplies, including a 4 section 7 day pill box, that works well. I look forward to down sizing in the future!
A huge help is that they asked if we use a smart phone, we do. We get notifications at each hour that pills are due to be taken and in the mornings get a ping that "tasks are scheduled". That would be the vitals each am.
We can correspond with our co-ordinator either by phone or text very easily and also get all lab reports timely, usually the same day or the next. This is a huge help as I can adjust my diet quickly. After so many yrs. on THE DIET it is difficult for me to just eat! So when I eat previously forbidden fruit so to speak I still hesitate and then check my Renals!
The hospital portal is very good and we have been using it since it's establishment years ago. I can contact ever one of my physicians direct on it.
CCC
""
Title: Re: LIFE ON THE LIST--- ------Pill taking regimen
Post by: kristina on September 12, 2020, 02:56:01 AM
Since the transplant the pill taking has begun big time. 18-20 or so at 8 am more at 10 and 2 then another 18 or so at 8 with a few more in between.
That can get some difficult to swallow.
I recalled a suggestion by a Chinese friend who explained to me that Chinese usually drink hot tea with meals or warm water to aid in digestion.

I tried it and it works----like gang busters.So much easier to get them down. No more cold water for me. After I get the bunch down I will drink a full glass of water. I can actually feel them dissolving in my throat.

CCC :yahoo;

Hello charlesc and I congratulate you to your transplant ! May it be with you for many years to come !

.... But I do not understand the amount of medications you are taking? Are you actually telling us that you take 18-20 different pills at 8 am every day? And more pills at 10 am every day and 2 pm every day and then another 18 different pills at 8 pm every day and another few pills every day in between?

Do I understand that right and it is really true ? And if so, is it connected to your size etc.? And if not, what is it connected to? Sorry to ask, but I am completely startled about this huge amount of daily pill-intake and I can't really imagine that I have just read what is there in front of me to read?

Best wishes from Kristina.   :waiting;  :grouphug;
Title: Re: LIFE ON THE LIST
Post by: charlesc on September 12, 2020, 05:00:05 PM
Kristina,
 Not it is not that many DIFFERENT meds but one med may have 6 pills in the am and another 6 at nt. As I understand this is only to determine what dosage that I require, Multiply this metric by the number of meds drives up the total. I am not large, 180 lb and 6 ft. I would think that after we reach a plateau that the multiples of one med could be coalesced into one pill.

The second day after the TX the changes started, some days take a couple out or add another I am two weeks out and changes come about 2x/wk. Makes for a lot of work for my wife!
The kidney is working great but the meds are being adjusted to its function, thus the changes and my old kidney is functioning so that must be taken into account,
I estimate that my old kidney will last until December, did the math on that about 11 days before I got the call! My renals came in and I figured that out.
So I assume that when it fails there would be an adjustment in meds, that is just conjecture on my part. Need to add to my question list!