***Note from Bob Aronson. Dr. Priscilla Diffie-Couch is a cousin who understands the power of words. She has contributed several blogs to Bob’s Newheart about a variety of subjects, but all revolve around mental and physical health issues.
Living in the 21st century with all of its stresses like the high cost of healthcare, raising a family and trying to make ends meet has resulted in higher stress levels for many. That stress wears on us and negatively affects our quality of life. Dr. Diffie-Couch says it doesn’t have to be that way. She offers a partial solution — communication. If you do it thoughtfully you likely will feel a whole lot better and the best part of it all is that it is free. You have nothing to lose by trying what she suggests — and you may have a whole lot to gain.
By Dr. Priscilla Diffie-Couch
Human communication and health are two topics I have been passionate about most of my life. So much so that I got three degrees in one and have spent most of my adult life digging deep into the other. Both are topics of such depth and expanse that no human being could come close to mastering the limitless scope of either. One facet that has especially fascinated me is the effect one has on the other, particularly, the impact that communication has on human health.
You can’t study the science and art of communication without being exposed to the needs and motives that drive human behavior. So you’ll find a bit of that as well as my own personal philosophy of life as you read here what flows from mind to page.
Research now tells us that human beings who are most social live the longest. Once you look into how that happens, you discover that, like everything else of value in life, it is not the quantity but quality of that interaction that has the most pronounced effect on human relationships and thereby on human health.
What it takes too many of us too long to learn in life is that a satisfying relationship can never be something one party feels and the other does not. It can be judged only in the eyes of both beholders. Just as you cannot make other people love you, you cannot make them feel good about the way you choose to communicate with them. Discovering how to meet the needs of someone else when you interact often requires a delicate dance until you match your own footsteps with theirs. But it is never as simple as that. There also has to be a meeting of minds and a link from the hearts. Reaching a level that makes for comfortable satisfying communication with people close to you can take years, even a lifetime. Sadly, if we don’t practice them with each interaction, we too easily forget the steps and we have to relearn them again and again.
We are all aware that uncontrolled stress can take a heavy toll on our health. It can precipitate heart attacks, suppress our immune system, rob us of rejuvenating restful sleep, and even shorten our lives. And there is nothing more stressful than unsatisfying communication with people who mean the most to us.
No two human beings are alike. The needs they bring into a communication moment will never be the same. We’ve all known people we care about deeply who are so needy that it strains our powers to provide. Some spend their lives immersed in such insecurity and unexplained longing that you can never tell them often enough the affirmations they need to hear. No matter the number of times you praise some people, withhold it or disagree with them once, and you will have failed to meet their needs. Efforts to interact satisfactorily with those people can extract costs on the health of all parties concerned.
Their constant state of unmet needs leads some to ceaselessly seek ways that they can prove their worth. The most common of these is to stake a claim on being “right.” Seldom is something so simple that someone can flip open a book and point to a passage and proclaim, “See. I was right.” Seldom are matters of fact at the heart of interpersonal disagreements. Shouldn’t you just agree to disagree and let it go? That is almost never satisfying communication among close friends and loved ones. Doing that leaves you to talk about things and people and the weather. The very feature that distinguishes an intimate relationship from one with a stranger is the freedom to express complex, sensitive thoughts. And express differences of opinion.
Few things in life are easily separated into two distinct categories: right or wrong. There is little satisfaction to be derived from being reminded of that. Butting heads with those you love will result in far fewer bruises, ego included, if you both understand some fundamental principles of persuasion. Clearly, speaking loudly does not sway minds. And even the softest ceaseless repetition will not help you prevail.
There are some steps that help increase mutual communication satisfaction. First, pick the right time and the right place to bring up touchy topics. Use qualifiers that make your words less bitter in case you have to eat them. “It seems,” “Based on what I have read,” “Having dealt with this issue many times,” or simply, “My opinion on this issue is.” Declamations of certainty don’t invite open discussion. They don’t warmly welcome alternate views.
Pick one issue and stick to it. Mirror others’ objections. Work to understand them and see where common ground can be reached. It may require repeated efforts but don’t give up in pointing out genuine areas of agreement. If you feel the need to refer to your special knowledge of or experience with an issue, do so without fanfare and without expecting to rule because of it. The most inexpert among us can sometimes offer the most worthwhile, insightful observations.
Avoid attacking the person’s character with the claim that you are refuting his or her opinions. When you do, you will not only be side-stepping the real issue, you will be kindling a fire where there should have been nonthreatening illumination. Ask yourself, if I alienate someone close to my heart, what does it gain me to be right?
Some of us with well-developed social skills settle into a narrow relationship mode with selected others in our lives. Falling into predictable patterns may be partly due to meeting expectations and partly due to the ease of habit. You’ve experienced this behavior firsthand or witnessed it in others. Someone will be a jokester with one cousin and almost austere with another. Cordial with one aunt and curtly blunt with another. Open and receptive to differences with one sibling while leaning toward condescension with another.
Behaviors, based on what we think others believe about us or expect of us, can be adjusted. Though it takes two to establish such patterns, one of them can begin to change their static nature. What works well for many is to ask a simple question while showing genuine interest to hear the answer. “If you had to sum up your philosophy of life in ten words or so, what would you say it is?” The answer can enlighten you both and lift clouds away from a stifling or oppressive atmosphere.
Yet another strange anomaly is too common among intimates. Some people were born with repair kits in their hand. Their mission in life is to fix all the imperfect people they know. They see others as covered with lint and they can’t wait to start pick pick picking away. It can be a little help with our grammar. Or correcting those niggling little details in our stories we never get quite right. Especially annoying are those who assure all who will listen that we must be confused about our facts. Often these well-intentioned folks can be disarmed with a lengthy pause and a warm smile and a simple “Thank you. I’ll work on that.” Recognizing my leaning in this direction, I try to keep reminding myself that “It takes only a moment to notice in others what it takes a lifetime to see in ourselves.”
One of my most constant personal goals is to never stop learning, not only about topics of great interest to me but about the most mystifying subject of all: myself. Beyond that, I am committed to improve upon what I find when I look deep inside every day. Few of us would deny the benefits to be derived from self study, self-improvement or the difficulty of sticking to this task. Even those of us who relish that challenge too often fail to see the need to do the same with others in our lives.
How often do we interact with others on the false assumption that we know what they want to hear, what their needs are, what their immediate concerns are, even what they are thinking. As one philosopher warned, “When you try to read others’ minds and motives, you sometimes miss by inches, but mostly by miles.” Every satisfying encounter is a process of discovery, both about yourself and the one you would hope to impact, inform, impress, amuse, or persuade.
In intimate communication, the demands are even greater than in the world of casual conversation or the kind we rely on at work. The filters we use with close family and friends when we send and receive messages are fundamentally the same as those we use elsewhere: our experiences, our knowledge, our environment, our feelings, our needs, our biases, etc. But these filters have to be much more refined and focused in intimate communication.
All these filters affect the words we choose when we speak and the way we interpret when we listen. We cannot ignore these filters if we hope to function as and be perceived as sensitive communicators. Yes, we have our facial and body expressions to aid us when we interact face-to-face. Actually, non-verbal carries the bulk of the weight in effective listening: touching, nodding, laughing, leaning, smiling, tone, volume, pitch, pauses and countless other little things. Too many people believe they have mastered the art of sensitive listening. Yet, it is one of the most prized and least developed skills on earth.
When not face-to-face, our obligations to choose our words with care increase multi-fold. It is especially easy to get careless in this age of electronic media. It goes without saying that being clear is a challenge when we have no give and take. Selecting just the right words cannot be done without a view to the reader.
Most important of all, when we write messages, we have to give careful consideration to the “tone” of the words we choose. Cocky and confident have similar meanings but are markedly different in tenor and tone. Connotations are built into countless words. In and of themselves, they can be negative, indifferent, condescending, hostile, or irreverent regardless of your intent. The possibilities are endless when it comes to the ways of skirting around saying someone is lying. We can refer to their stories, unsupported claims, or disingenuous declamations. My all-time favorite is “He is practiced in the artistry of shading the truth.”
Regardless of how short the written message, we must allow ourselves sufficient time to read and re-read it with a view as to not only whether it is clear, but how it will make the reader feel. Far too often, when we relate to close loved ones, we are least attentive to the kind of proofreading that matters most. Before excusing yourself by saying you were swamped and didn’t have enough time, think about the hours and days and even years it may take to make amends for something said in haste. I am reminded of my uncle’s clever poem about a speeder who ended up in an early grave: “But, oh, just think of the time he saved.”
As we age, we tend to limit our circle of close friends to those with whom we can have satisfying communication. That is wise. Dealing with family makes such decisions more difficult, but there are some whose world view and basic values are so opposed to our own, we may have to settle for infrequent, even superficial interaction, to save our sanity and avoid unnecessary stress.
We all know that love is not something to which we are entitled. It is something we have to earn every day with word and deed. None of the intimate communication problems I have identified here are simple to correct. The factors that contribute to each are complex and multi-faceted. It is too easy to create a new problem in our attempt to eliminate another. That doesn’t mean we stop trying. The first thing we have to remember is that none of our interactions have a distinct and separate beginning and end. Relationships exist on a continuum that cannot be taken out of context and treated as independent events.
The most fruitful approach is to begin by looking into the mirror. There we see the person closest to us over whom we have the greatest control. If you have to wonder, “Does this apply to me?” It probably does. The more successful we are in recognizing and improving on our own shortcomings when we relate to others the more changes we will begin to see in them. Therein lies the real power of effective interpersonal communication that contributes most profoundly to our own health and to that of the people most precious in our lives.
An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa. In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.
An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends. She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.
Bob Aronson has worked as a broadcast journalist, Minnesota Governor’s Communications Director and for 25 years led his own company as an international communication consultant specializing in health care.
In 2007 he had a heart transplant at the Mayo Clinic in Jacksonville, Florida. He is the Bob of Bob’s Newheart and the author of most of the nearly 300 posts on this site. He is also the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) support group.
You may comment in the space provided or email your thoughts to him at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
By Bob Aronson
There’s something about petting a dog or having a cat nestle in your lap that brings one a certain serenity or at least a warm feeling. It’s been shown medically that the company of a pet can bring blood pressure down, lessen depression, calm frayed nerves and even help to settle an upset stomach.
Is there anything cuter than a puppy or kitten? Even at their destructive worst they are cute. When we got Reilly, our Soft Coated Wheaten Terrier as a puppy she loved to shred paper and those razor sharp puppy teeth can do that in a split second.
Look at this mess. She had gotten a hold of some toilet paper and made a mess of our living room, there were shreds of paper everywhere. And…when we found her amidst that pile of blowing and drifting tissue, she looked up and wagged her tail, proud of her accomplishment and willing to destroy even more if it would please us. Look at this picture, how could you possibly do anything but laugh upon seeing this mess.
Besides the laughs, the warm fuzzy feelings and the love what can pets do for you? According to the Centers for Disease Control and Prevention, the company of a pet can help people who are living with depression. Why is that? I think it’s because they ask for very little and give unlimited affection and companionship. Maybe it’s because cats, dogs and other companion creatures offer unlimited affection and nonjudgmental companionship. They lift our spirits and lower our stress. They counteract symptoms such as isolation, rumination and lethargy. Even just looking at our two dogs Reilly and Ziggy (mini schnauzer) and how much they like each other gives one a warm all over feeling.
People who study human behavior tell us that caring for animals is an ego boost, a shot in the self-esteem department that gives people a sense of purpose, of being needed and necessary. Knowing that another living being depends on us for sustenance and protection gives our self-worth a good shot in the arm.
According to a 2009 study published in the American Journal of Orthopsychiatry.Jennifer P. Wisdom, PhD, an associate professor of clinical psychology at Columbia University Medical Center and several of her colleagues surveyed 177 nearly 200 patients with varying degrees of mental illness to determine how the recovery process works. The study concluded that besides offering the boost in self-worth, Pets can serve as either substitute or additional family members. Yes, family. If you’ve ever had a pet you know that you consider them family— because they are.
For some people the only love in their lives is the love shared between them and their companion animals. Now, I don’t know who invented the term companion animal but it is perfect because they are more than possessions, they are friends, companions, confidants and you could even say, therapists. If you can find a single human being who is a better listener that your dog or cat or bird or whatever I’ll buy you lunch. They never object, they don’t interrupt they just listen very carefully and wag their tails or curl up close to you. Their affection washes over you like a hot shower after a long run and all the troubles of the day run into the drain.
Our dogs are happy to see us at least a dozen times a day. If I leave to go the store, I get a reception when I come home that is as though I had been gone for a year. I get the same reception if I go to the mail box and come back in a minute later. Open the door and Ziggy is running in circles with joy and Reilly is licking my hand. They are always glad to see me and you know there is nothing phony about it…they really are glad to see you every time they see you.
Here’s a classic video…it’s a must see and it’s short. A soldier returns from a tour of duty in Afghanistan and the first one to greet him is his dog. This will bring tears to your eyes. https://www.youtube.com/watch?v=ysKAVyXi0J4
Not only are pets good for your mental health, they can be of immeasurable assistance in maintaining your physical health as well. Dogs need to be walked and that means you need to walk with them. You may not think of it this way but your dog is helping you get exercise you might not get otherwise. Every medical study done on the value of exercise says the same thing, even a casual walk is good for you. You don’t have to sprint or run or jog, just walk with Fido and you are getting a health benefit. I haven’t seen any studies on the matter but I’ll bet that dog owners walk more than people who don’t have them. And…I’ve read that people who have pets, or companion animals also have lower blood pressure and decreased cortisol…that’s the stuff that causes stress.
Most nursing homes or extended care facilities allow visits from animals. When my mom was in a nursing home we used to bring our terrier/Chihuahua mixed dog Lady with us. Mom loved seeing her and lady, who could be a cranky little dog, loved seeing mom. I think they both loved all the attention they got. Other nursing home residents always stopped and wanted to pet Lady. One little 12 pound dog could make a whole nursing home happy at least for a few minutes.
“Okay,” you say, “I’ll buy all the benefits of having a pet but I can’t. I’m not home much, I travel a lot, I just can’t care for one.” Well, you can benefit from animals anyway. Alan Beck who is the Director of the Center for Human-Animal Bonding at Purdue University suggests the following:
Visit a zoo. Farms that open their barns to visitors and even petting zoos can also be an entrée into the animal world.
- Put up a birdfeeder in your backyard or outside your apartment window. You could also get out to a park to enjoy birds, chipmunks and other critters in their natural setting.
- Set up a home aquarium. It may take a little work to get the pH levels balanced, but an established fish tank is fairly easy to maintain.
- Walk a friend’s dog. You could also offer to pet-sit for dogs, cats, fish and so forth when friends and family members go on vacation, but be sure you’re ready to take on the responsibility.
- Volunteer at an animal shelter. This is a win-win-win. The shelter gets extra hands to groom, play with or clean up after their charges; you get the feel-good effects of being around animals, and the abandoned pets benefit from your attention.
If none of that appeals to you how about a good movie. One that tugs at your heart strings and makes you feel good. Try any one of these.
This giant but adorable St. Bernard’s real name was Chris.
Buddy — from the “Air Bud” movies — was his real name, and he also played Comet in Full House!
Marley, of “Marley and Me” was played by 18 different dogs. All really freaking cute.
You can find more great “Feel good” dog movies at http://www.buzzfeed.com/lyapalater/30-of-the-greatest-movie-dogs
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – spread the word about the immediate need for more organ donors. On-line registration can be done at www.donatelife.net Whenever you can, help people formally register. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
You are also invited to join Facebook’s Organ Transplantation Initiative (OTI) a 3,500 member group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties. Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.
Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients. He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy.
Bob is a former journalist, Governor’s Communication Director and international communications consultant.
A note from Bob Aronson, founder and publisher of Bob’s Newheart
This blog is a re-print of a piece published by Gift of Life Family House in Philadelphia, Pennsylvania. Gift of Life Family House describes itself as a “home away from home” for transplant patients and their families by providing temporary, affordable lodging and supportive services to those who travel to Philadelphia for transplant-related care. Gift of Life Family House is a 501(c)(3) non-profit charitable organization.
There are many similar organizations at Medical Centers all over the country. Here in Jacksonville, Florida, Gabriel House of Care on the famed Mayo Clinic campus functions much like Gift of Life, but no matter where they are they need outside support with dollars if you have some to spare — and if not, donate packaged goods like paper towels, dish soap and Kleenex that are always in short supply.
In the entire transplant process the daily caregiver is second only in importance to the donor. How important is the caregiver? How important is your life? Most medical centers consider the caregiver of such great importance that if the potential transplant recipient doesn’t have a competent, dependable and compassionate person to fill that role, then he or she may not qualify for a new organ. Have I got your attention?
This post is of equal importance to both the patient and the caregiver. The patient has to be sure he/she not only selects the right person but must ensure that the caregiver has a complete understanding of what the role entails. The caregiver, not only has to understand the role they have accepted but must also make sure the patient understands their capabilities and limitations. Saying, “Yes,” to being a caregiver is making a commitment that is more than taking care of someone for a few days. It could stretch out for years.
Being a caregiver for a transplant patient or recipient is no easy task. It can be emotionally and physically draining and it can also be one of pride and even exuberance but caregivers ought to know what they are agreeing to when asked to take on the job. This advice and information from Gift of Life Family House is invaluable. You can learn more about this organization at http://www.giftoflifefamilyhouse.org/
Transplant Stages for Caregivers
From Diagnosis Until the Rest of our Lives…Organ transplant is a life-long battle. The battle may be very difficult when first diagnosed with a medical issue that requires a transplant but many people feel it becomes easier and is well worth it; however transplant does not end after surgery for the patient or the caregiver. When diagnosed with an illness that will ultimately require an organ transplant some patients and caregivers think that after surgery the battle is over. Having a positive outlook is good but it is also helpful to be prepared for the tough times ahead that can come with a transplant. Caregiver Lifeline will chronicle the stages of transplant and some of the feelings and issues transplant caregivers experience when the patient is initially diagnosed and told they need a transplant; what it is like to wait for a transplant; the actual transplant surgery; what it is like post-surgery up until one year; and lastly, what it may be like post-transplant one year after and on. Some personal accounts of actual transplant caregivers who have been through the stages will also be described in this section.
Diagnosis of a medical issue that requires a life-saving transplant can produce many different emotions in caregivers and family members. Those emotions can vary from one person to the next and are many times natural feelings that occur when dealing with a difficult medical diagnosis. Regardless of the organ, age or relationship you have with the patient, knowing that your loved one could die without a transplant can be very overwhelming, scary, upsetting and even angering.
At the moment of diagnosis some transplant caregivers and family members have admitted that they were very scared, but quite often due to lack of information and education about what their loved one was going through and what to expect in the future. Once they received that information their feelings of being scared or upset decreased because they knew what to expect. One brother of a kidney recipient admitted feeling very scared when he and his family initially found out about his brother’s kidney disease. He then described feeling more confident once he learned more about his brother’s condition and even better when he found out he could donate his own kidney to his brother, which he eventually did. The education this family received helped them prepare for the future and cope better with their situation. Not all individuals and families are alike. Other families and patients have admitted that too much information is a bad thing for them and they become more anxious or scared when they are given too much information all at once. It is helpful to know what type of person you are: do you like all of the information “no holds barred” or a little information at a time so you have time to process it at your own pace? Letting the transplant team know how you and your family would like to be treated can be very helpful so they can try to treat you and the patient accordingly.
When the diagnosis of an illness that requires a transplant happens suddenly, families and caregivers can be overwhelmed and may not retain information given or may forget to ask important questions about the transplant process. Some questions that may be helpful to ask the medical team are:
- Why does the patient need a transplant?
- Who will the patient receive a transplant from?
- How long will the patient need to wait for a transplant?
- What other treatments options are available?
- What treatment will the patient need to receive while they wait for their transplant? And how will that treatment affect their life (will they need to stop working, or will they need to be hospitalized?)
- Will the transplant prolong their life?
- What will be required after they receive a transplant? More hospitalization? Medication?
- How much will everything cost? And what will happen if we can’t afford the cost?
It is helpful to keep these questions and answers written in a journal to have available to look on when needed.
One mother describes finding out during her pregnancy that her son had significant kidney issues while in her uterus and he may not survive. She described being very shocked after already having given birth almost two years previous to a healthy son. She also described feeling like she was in a “nightmare waiting to wake up.” She states she never woke up and had to come to the realization that their family was in for a tough ride, if her son survived at all. Fortunately her son did survive and he was eventually able to receive a kidney transplant.
Many people who require a transplant have some knowledge beforehand that a transplant may be necessary. For instance, one transplant caregiver of her son (who required a heart transplant) was somewhat prepared for the day they were told he would need a new heart. Her son had medical issues for many years and a transplant was always a distinct possibility. During the time previous to needing a transplant this mother had a chance to educate herself on the process so the initial diagnosis was not a huge shock or completely overwhelming. This mother was still scared due to the risk of surgery and the risk the new heart would not work, but she also had a chance to become prepared and ask for support from her family and friends.
It may be difficult to prepare for a diagnosis that you had no previous knowledge of or any reason to prepare for, which is why it is ok to call your transplant team at any time if you have a concern or question. You could also make an appointment after you compile all your questions together. It seems scary to go home from the hospital or the doctors not having all the information you would like, so you can always perform the research yourself through reputable internet sites like www.Donors1.org or www.UNOS.org. The next step in the transplant process may also allow for some extra time to prepare for the future.
Between the time when a patient, caregiver and family receive the news of needing a transplant and when they officially have surgery and receive their new organ, there is a waiting process. The wait while the patient is actually on the UNOS wait list can be short or very long, though there may be many emotional and physical issues experienced by the patient and family regardless of the duration of their wait. Quite a few things can determine how quickly a person receives a transplant and those standards differ from one organ to the next. For instance, a kidney transplant could happen rather quickly if a patient has a family or friend who is willing to be their living donor. A willing person (not bribed or forced) must be tested to see if they are a match for the patient. If they are a match, surgery can be scheduled and the transfer of kidney from the living donor to the patient can happen. If a person has no willing, matching, living person to donate to them, then they are placed on a waiting list through UNOS and must wait for a kidney from a deceased donor.
Some hospitals also do living donor liver transplants, where a willing person can donate part of their liver. The living donor must also match the recipient, though the guidelines are different than are for a living kidney donor transplant. Heart, lung and pancreas are organs that must be taken from a deceased donor, which unfortunately may make the wait longer. For more information on the specifics of different organs and wait times please visit the UNOS Website.
Because the wait time is so unknown, many caregivers and patients feel out of control and powerless. One mother described how helpless she felt and that there was nothing she could do to help her son while he was waiting for a transplant, which caused her much stress. Many caregivers and patients experience emotional “ups and downs” while waiting for a transplant because the future is unknown. It is not uncommon to feel like you are living one day to the next hoping for the call from the transplant center about a possible organ for your loved one. A transplant social worker suggested that one way to feel more in control during the wait time is to stay in contact with the transplant team, call when you have questions, keep appointments as scheduled and help the patient take responsibility for their health care. By staying in contact with the transplant team, you and the patient can feel more connected to the transplant process which may alleviate some of the uncertainties of the wait process.
During the wait process caregivers experience many different emotions. One of the most common emotions described by caregivers is fear that their family or friend will not live long enough to get their organ. Others experience emotions such as anger at the patient, medical team, or even themselves. Some caregivers may feel anxiety regarding their own life regarding their financial situation and how they will afford to care for their family member or friend and whether they will have to stop working or stop doing things they enjoy. Another emotion may be denial. Caregivers may think the issue is not as serious as it truly may be. Most emotions felt by caregivers are natural and quite universal. Support groups can be very helpful because it allows transplant caregivers to hear some of the universal concerns and issues of other transplant patients and caregivers. It is also common for a caregiver to feel as though they are the only person on earth going through the issues related to being a transplant caregiver, which is another reason a support group can be helpful. It can be beneficial to be able to talk to others who have dealt with or are dealing with the same issues.
Another emotion that many patients and families feel is grief; some even call it “survivor’s guilt.” One mother described feeling quite a bit of grief that she was waiting for someone else to die in order for her son to receive a kidney to live. She states, “That was the hardest part for me, knowing that our overwhelming joy would be another family’s overwhelming grief.” A different mother to a 14 year-old heart recipient was so excited when her son received his heart and had a second chance at life, but her family struggled for some time as well realizing that another person passed away in order for her son to receive a heart. She stated, “We are so joyful that our son will have a second chance but it is tempered because there is a huge loss associated with it for someone else.” This type of feeling is extremely natural for many transplant caregivers and organ recipients. In the exception of a living kidney or liver donor, in order for one person to receive an organ transplant, another person will pass away and their family has the option to donate their organs. However it is a wonderful gift for a person to donate their organs after they pass away, because it is giving another person a second chance at life. To understand the donation process better, visit www.Unos.org or www.Donors1.org.
The wait for an organ can vary so it may be helpful to address your feelings as they occur and get help if you are in need. Finding out that others have gone through similar issues can be helpful through support groups. Talking to the transplant social worker can also be beneficial because they can connect you to other options such as counseling or other supportive services. Support groups and counseling can be helpful to the patient as well as the caregiver because the wait process can be difficult for both parties. Don’t forget to include other siblings or family of the patient because many times they may also have similar feelings requiring additional support.
During the waiting period, caregivers and family may have time to prepare for the future. Finances usually play a large role in any medical issue that requires a lot of medication or frequent appointments or hospitalization. Because transplants are not over after surgery, planning and preparing for the financial cost is important. There are many resources to assist with transplant costs if a person has limited means. For instance, most prescription companies provide assistance for drug costs. Many large hospitals also may have financial assistance programs for patients. If there is ever a financial concern, talk to the transplant social worker immediately and let them help through the process. Many times the caregiver is left to deal with those issues, especially if they become the financial provider because the patient cannot work. As the caregiver your employment may become affected, which could also affect your health insurance. It may be helpful to prepare your employer if there is going to be any changes with your ability to work and how that could affect your health insurance.
Also see Financial Burden on Caregivers for more information.
In addition to planning financially or preparing for your own work issues, it may be helpful to begin to talk with the patient about their future. The patient’s future can include many different things, so it is important to identify what is important to them. For instance, has the patient thought about their job or hobbies and how that will affect their financial state or health insurance? It may be scary to think about, but what if the patient becomes too sick and no longer can make decisions? Who will be the medical power of attorney or a financial power of attorney? Does the patient have an advance directive, and if not, do you know their wishes? Your relationship with the patient may determine your involvement in their care if they cannot make their own decisions, however it is still important to encourage the patient to think about their own future.
Finally, your family member is getting their organ and a second chance at life! Transplant surgery can be very exciting because the wait is over and life can restart. You may be able to go back to work or begin doing what you used to enjoy; the patient can be normal again, and live a long, happy, healthy life. All of this can be true but the surgery and recovery are very important and sometimes the most difficult part of the transplant process.
During the transplant surgery stage the patient can be hospitalized for anywhere between 5 days and 14 days, without complications. If there is a complication during surgery the patient may then be required to stay in the hospital for longer than expected. At this time you may physically not want to leave the patient’s side but you may also have to take care of the rest of your family or continue to work. It can be very stressful for a caregiver to balance their life with that of the patient’s transplant recovery. It is important for a caregiver to remember that taking personal time is essential, even during this time, because chronic stress can build up and potentially cause medical and emotional issues which could limit the caregiver’s ability to be a good caregiver. Leaving the hospital for an hour a day, or taking an hour a day to do something enjoyable could make a positive difference while dealing with the stress involved with the hospitalization. Don’t forget there are many transplant team members available if you have any concerns.
Post Surgery – 1 year
Many transplant social workers have said that the first year after a transplant can be very difficult for patients and families. Transplant does not end after surgery, and many times people feel that after surgery and a short recovery everything will be fine and life will resume with little obstacles. Sometimes it is not always possible to jump back into your previous routine and lifestyle so quickly. For some people, one year after transplant can be the most difficult. Trying to get your life back while the patient is continually being monitored by doctors for rejection and getting used to a new life with a new organ can be tough. Each organ is different and recovery times and needs are different for each patient, so it is important to always talk to the transplant team about concerns or questions and to better understand what it could be like for the patient.
One family stated they were in and out of the hospital more in the one year post-transplant than any other time because of so many rejection episodes. Every patient and transplant is different; some patients experience many rejection episodes and need to go back and forth to the hospital, which is not uncommon, while other patients may never experience a rejection episode. If the patient feels they are having symptoms of rejection, it is important to follow the discharge directions from the transplant team and contact them as soon as possible.
Because recovery times can differ from one transplant to the next it is not easy to identify a set recovery time. For lung transplants, a patient may be required to attend up to three appointments per week post-transplant for up to three months, whereas for a kidney transplant only two appointments for 6 weeks may be required. If a person does not reside in the transplant hospital area it can make life even more difficult post-transplant. Similarly, if the caregiver needs to return to their life or work they also may have a tough time arranging the patient’s transportation to and from the hospital for their appointments. It may seem stressful for a transplant caregiver one year post-transplant because there may be alot of pressure to keep the patient healthy with their new organ. Some things that are important to consider after transplant is monitoring for rejection, getting used to taking new medications, nutrition, getting back to doing things you and the patient love and keeping a positive outlook. Talk to your transplant team to find out the best way to monitor the patient post-transplant, as every patient is different.
Depression and other mental health disorders have been known to be prevalent up to one year post transplant, and emotional health could affect compliance which can in turn affect the survival of the transplant. Caregivers may also experience symptoms of depression due to lifestyle changes and stress that transplant can cause. Caregiver and family support has been found to be very effective in assisting with emotional and mental issues post-transplant so the caregiver should always plan for continued contact with the medical team as needed.
As a caregiver it can be an emotional rollercoaster trying to monitor the patient’s health after a transplant while living your own life and caring for other family members or working. The section about compliance may provide some assistance when it comes to getting the patient to care for their organ and prevent rejection with good compliance. The transplant team is there to help with concerns and issues as well. Please see Emotional Health for Transplant Caregivers for more information.
Post Transplant – Until the Rest of our Lives
The patient will always have their transplant doctors and team to contact with questions or concerns at any point down the line. Transplant is life-long and although stable patients’ and families’ contact with the transplant team may lessen, the transplant team should always be there for the patient and family as long as needed.
At this point in the transplant the patient may be stable enough to have very little contact with the transplant team; therefore it’s time to get back to life if you and the patient have not done so already. It is recommended to go back to enjoying things you and your loved ones once enjoyed. One important reason a person would want to receive a transplant would be to extend their life so they can continue to live their life by doing what they love.
Many caregivers have a difficult time letting their caregiver role go because it has been an identity for quite some time. If there is no need for you to be a caregiver any longer then it is important to move on to your next role and place the caregiver role on the back burner. If you enjoyed being a mom, a worker or soccer coach for example, then take on those roles again and make them an important priority. The same can be said for the patient who may no longer be the patient, and also must place that role to the side. This stage can be difficult for both parties because many people have trouble returning to work, or spending time with friends without having a constant worry of the transplant patient.
How can a caregiver stop being a caregiver? It may be helpful to first identify what you enjoy in life. Do you love being a mother? Did/do you love your job? Did you previously spend every Thursday with your friends playing golf or going to the movies? Then try to do those enjoyable things as often as possible without thinking about transplant. Encourage the patient to do this as well.
Though you are being encouraged to let the caregiver role go, it does not mean you and the patient no longer have transplant responsibilities. Transplant is a lifelong process so you and the patient may need to take on the patient/caregiver role again at some point down the line. Additionally, there are some transplant pieces the patient cannot put on the back burner, such as good nutrition, exercise and medication compliance.
Another piece of life post-transplant is you and the patient continuing to live a healthy lifestyle. The patient will need to keep their new organ healthy, and as a caregiver you may play a large role in encouraging them. Without good health the organ could reject, placing the patient back where they were previously: needing a transplant. The patient’s transplant team, including their dietician, will be able to give good advice on good nutrition and exercise for the patient. Similarly, it is important for you to have good nutrition and exercise practices to keep yourself healthy as well. Good nutrition and exercise habits have even been shown to decrease depression. Please see the Physical Health for Transplant Caregivers and Emotional Health for Transplant Caregivers sections for more information and education for the caregiver.
Don’t forget to live your life to the fullest now that you and the patient have a second chance at life. The transplant is giving you and your family the opportunity to appreciate life and everything it has to offer.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.