The Wait

There is a waiting process 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.

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When it has been determined an organ transplant is needed, a patient is placed on the United Network for Organ Sharing (UNOS) waitlist. A patient’s time on the waitlist can vary. The patient and family may experience many emotional and physical issues 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 a living donor. A willing person (not bribed or forced) must be tested to see if he or she is a match for the patient. If there is a match, surgery can be scheduled and the transfer of kidney from the living donor to the patient can happen. In some cases, a paired kidney donation can take place. If a person has no willing, matching, living person to donate to him or her, then he or she is placed on a waiting list through UNOS and must wait for a kidney from a deceased donor.

Some hospitals do living donor liver transplants where a willing person can donate part of his or her liver. The living donor must also match the recipient, though the guidelines are different than 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 unknown, many caregivers and patients feel out of control and powerless. One mother described how helpless she felt 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. It is not uncommon to feel like you are living one day to the next, hoping for “the call” from your transplant center about a possible organ for your loved one.

A transplant social worker suggests 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 his or her healthcare. By staying in contact with the transplant team, you and the patient may feel more connected to the transplant process, which can alleviate some of the uncertainties of the wait process.

During the waiting process, caregivers experience many different emotions. One of the most common emotions described by caregivers is fear that his or her family or friend will not live long enough to receive an organ. Others may experience emotions such as anger at the patient, medical team, or even themselves. Some caregivers feel anxiety regarding their own lives and financial situations. How will they afford to care for their family member or friend? Will they have to stop working or stop doing things they enjoy? Caregivers may also be in denial –  thinking the issue is not as serious as it may be. The emotions caregivers feel are natural and universal.

Support Groups can be very helpful because they allow transplant caregivers to hear some of the concerns and issues of other transplant patients and caregivers. It is also common for a caregiver to feel as though they are alone going through the issues related to being a transplant caregiver – this is another reason a support group can be helpful. It can be beneficial to talk to others who have dealt with or are dealing with the same issues.

Many patients and families express feelings of grief–some even call it “survivor’s guilt.” One mother described feeling grief because she was waiting for someone else to die so her son could receive his life-saving kidney transplant. 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, 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 feeling is natural for transplant caregivers and organ recipients. With the exception of a living kidney or liver donor, for one person to receive an organ transplant, another person will pass away and his or her family will be presented the option to donate his or her organs. However, it is a wonderful gift for a person to donate his or her organs after passing away because it is giving another person a second chance at life.

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. Apart from support groups, talking to your transplant social worker can be beneficial because he or she can connect you to other supportive services, such as counseling. 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, 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 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 you through the process. Many times, the caregiver is left to deal with those issues–especially if he or she becomes 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 are going to be any changes with your ability to work and how that could affect your health insurance.

Learn more about financial resources.

In addition to planning for financial stresses, it may be helpful to begin to talk with the patient about his or her future. It is important to identify what is important to the patient. For instance, has the patient thought about his or her job or hobbies and how that will affect his or her financial state or health insurance? It may be scary to think about, but what if the patient becomes too sick and can no longer 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 his or her wishes? Your relationship with the patient may determine your involvement in his or her care if he or she cannot make decisions. However, it is still important to encourage the patient to think about his or her own future.

Read more about emotional issues while awaiting a transplant.

 

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