Pre-transplant caregiving

As part of the pre-transplant evaluation, your transplant coordinator will discuss your role in the transplant process. Each center will have specific guidelines to follow but they generally require that you are able to provide a safe, healthy environment for the patient and that you are willing to and capable of assisting him or her. Most centers offer a variety of classes that are designed to help you understand and care for your loved one. Most programs have support groups and social media sites available for patients and caregivers. You may find becoming involved in such groups helpful and comforting. Developing a good relationship with your transplant coordinators, the nursing staff, and the transplant team is important. The transplant social worker will help you in a variety of ways, such as finding housing; assisting with social services, financial grants, and foundation support; and offering therapeutic support groups and counseling sessions for patients and caretakers.

You will be transporting and be assisting your loved one during their evaluation, follow-up appointments, and testing before the transplant. During the evaluation, the center will explain its program and policies to you. Regular clinic visits will include pulmonary function tests, x-rays, and blood work, which are usually taken prior to seeing the doctor. It can take hours for the results to come in, so having snacks, a good book, a craft, or an activity will help make the day go by faster. Walk around and explore the facility, and look for any green spaces or step-away places to visit while you are waiting.

As the patient’s health declines and he or she moves closer to a transplant, the frequency of appointments and hospitalizations will increase. Your loved one may face a series of life-threatening situations. (After all, a transplant is the planned way to deal with this.) Understanding what to expect, developing a good relationship with the nurses, coordinators, and physicians, and trusting in your team’s treatment plan, are important steps during this time. You may also discuss legal documents which cover end-of-life contingencies.

The transplant experience is life-changing for the recipient and for you. It can be extremely stressful, even in the best of circumstances. Recommitting now to your own health by developing better diet and exercise habits will help strengthen you and lower your stress level when your care receiver needs you the most.