During a Pandemic: Mental Health Before & After a Transplant

What if you were told during a pandemic that you needed an organ transplant? Today, this is a reality in healthcare. Learning about and deciding to go through a transplant is a very personal decision. It’s a decision that impacts you as well as the people around you, and it can take a toll on a person’s mental health. Going through your transplant journey during a pandemic can feel both scary and overwhelming.

As a licensed clinical social worker and board-approved clinical supervisor with specialties in dialysis, organ transplantation and organ donation, I help our patients and their families navigate their physical, mental and emotional journeys. There are many emotions wrapped up in the organ transplant process, from when you come in for transplant evaluation, to adding your name to the national waiting list, thinking about being hospitalized during a pandemic, and looking forward to living life as a transplant recipient. Below are some questions I've been asked, along with thoughts for patients and caregivers including what you can expect from your care teams.

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

Should I come to a hospital during a pandemic for a transplant, or should I wait until the pandemic is over? This is a common question nowadays. The answer is, it depends. 

If it is a choice between either living with a new, functioning organ or dying if you do not receive the transplant, as scary as it is, I recommend considering the transplant process. Stop and think about the upsides and the downsides of receiving the transplant first, and then the upsides and downsides of not receiving the transplant. Decide together with your doctor if you should come in or wait out the pandemic.

Ask yourself questions like:

• Is there a perfect or better time to be transplanted?
• What will happen if I do not get transplanted now?
• What are the risks if I do go in for the transplant?
• What precautions is my hospital taking to help ensure my safety?

At Ochsner, our standard involves taking all of the necessary precautions to help ensure our people are working safely and our patients are treated safely. This includes and is not limited to wearing proper personal protective equipment such as gloves and masks, handwashing, implementing proper infection control measures, following proper protocols, and practicing pandemic-appropriate guidelines and personal spacing. We are transplanting patients with your safety at the forefront of every decision we make.

You may be feeling hopeful and happy about transplantation or may be scared and not so hopeful. Emotions can run all over the place and not knowing what each new day will bring can lead to feelings of uncertainty, anger, grief, anxiety or depression. This is especially true if there have been any setbacks in your health, or when something that feels uncontrollable is happening around you. 

Finances can also be a source of stress especially during a pandemic, and necessary medications can be expensive. Talk with your transplant team. We are here to help and will listen to you, support you and provide you with the best care possible as well as up-to-date information and useful resources for you and your loved ones. Our goal is for you to live with the highest quality of life and the best outcomes possible.

After a transplant, you may notice positive feelings like gratitude or hope. You may ask yourself: Why did I get this organ instead of someone else? How will I handle knowing someone passed away and they gave me this organ? These are all normal thoughts and feelings, and it’s important to remember you are not in control of someone else’s organ donation. An organ donor’s family decides if their loved one’s organs shall be donated, or not donated. 

The best thing you can do is to take control over how you care for yourself and your new organ after a transplant. Doing this will help ensure your organ’s success for as long as possible, and it is one of the best ways to honor the priceless gift of organ donation. We will guide you on how to take care of yourself and your organ. We are here with you throughout your journey regardless of where you go.

What are some ways I can manage my complex emotions and feelings?

Having trusted caregivers and support people is important, both personally and medically. You may experience new or heightened emotions before, during or after receiving a transplant. Work together with your transplant team before, during and after a transplant by talking about any concerns or needs you are experiencing. You and your caregiver will also work with a master’s level transplant social worker to learn more about how to manage complex emotions and stressors. We share in your goals and wish for you to be able to lead a happy, healthy and productive life. When you choose a transplant, your transplant team becomes part of your overall wellness and care plan.

What role do my personal 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 where necessary, plays a critical role in the success of your transplant.

Your caregivers and your transplant team create a network for you that is dedicated to your well-being. Caregivers provide you with important emotional comfort; physical support; basic support, such as transportation to and from all transplant appointments; and daily support, such as helping you keep track of new medications and information discussed during health care visits with the transplant team.

What should I expect going forward? 

A transplant can be lifesaving. It’s a journey and there may be bumps in your road to recovery. Using the right resources at the right time can improve your overall quality of life, before, during and after a transplant. Your transplant team of experts provides mental, emotional, physical, surgical, medical, nutritional and spiritual support as well as financial information and resources so you can be as prepared as possible for the journey ahead. Caring for you remains our number one priority.