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
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:
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.The “Wait”
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.Transplant Surgery
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.-0-
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 firstname.lastname@example.org. 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 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 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 email@example.com 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.