What would you do if you were told you needed an organ transplant? Learning about and ultimately making the decision to pursue a transplant is a very personal process. It’s a decision that impacts both the decisionmaker as well as the people around them, and it can take a toll on a person’s mental health.

As a licensed clinical social worker who specializes in organ transplantation, I help our transplant patients and their families navigate the journey both physically and psychologically. There are so many emotions wrapped up in the organ transplant process, from adding your name to the national waiting list to thinking about what you would say to your organ donor’s family. Below are some of the questions I’m frequently asked, along with suggestions for caregivers and what transplant patients can expect from their care teams.

What are some common emotions associated with a transplant patient’s experience?

Depending on the day, you may feel hopeful and happy, or just the opposite. Emotions can run high and feelings of uncertainty about what each new day can bring may lead to feelings of depression or anxiety. This is especially true if there have been any setbacks during your recovery. Finances may also be a source of stress since necessary medications can be expensive.

Feelings of guilt are not uncommon after receiving such a precious and priceless gift from another person. You may ask yourself: Why did I get to receive this organ instead of someone else? How do I cope with knowing someone passed away to give me this organ? These are all normal responses, and it’s important to remember that transplant organ recipients are not in control of someone’s death. The donor’s family decides if the organs will be donated or not. Taking care of yourself honors the gift you have received.

How can transplant patients best cope with these feelings?

Having a trusted caregiver who can provide support is key, especially since there are different emotions that you may experience before, during and after receiving a transplant. You and your caregiver can work with a master’s level transplant social worker to learn more about how to manage these emotions and stressors. The goal is for you to lead a happy, healthy, and productive life.

What role do caregivers play?

Receiving an organ is a lifetime commitment that involves appointments, daily care, and medications. A strong, stable support system of caregivers – both at home and at the hospital – plays a critical role in the success of the transplant.

Your caregivers and your transplant team create a network that is dedicated to your well-being and to helping your transplanted organ to work well for you. Caregivers will provide you with emotional support, physical support and even transportation to and from all transplant appointments, while also helping you keeping track of new medications and information discussed during visits with the transplant team.

The road ahead

A transplant can be lifesaving. However, it’s a journey and there may be bumps in the road to recovery. Accessing the right resources at the right time enhances your overall quality of life before, during and after a transplant. Your transplant team will be by your side every step of the way to offer additional mental, emotional, physical, medical, nutritional and spiritual support when you need it. You are our priority.

Need additional resources? Reach out to your health care team – we are all here to help.