Post-Transplant Mental Health & Well-being Update with Dr. Sheila Jowsey-Gregoire

Receiving an organ transplant is a major, life-changing event. Often we think of the physical changes patients experience after transplant. Patients slowly go from being sick to being well again; they’re adjusting to new medications; routines they previously required to stay alive may no longer be needed. But transplant patients also undergo significant emotional and psychological transitions following transplant. To better understand what transplant patients can expect, we spoke with Sheila Jowsey-Gregoire, M.D., psychiatrist in the Transplant Center at Mayo Clinic’s campus in Jacksonville, Florida.

What can transplant patients expect to experience emotionally following their transplant?

Transplant patients can experience a variety of emotions following their transplant. Often there is an immediate feeling of relief that the transplant is over. Despite the fact they are recovering from a major surgery, many patients notice a change in their physical well-being right away, which impacts their identity. They go from someone who was sick, debilitated and frail, to someone with increasing strength and vitality.

One thing we watch for is any changes to sleep or mood as a result of new immunosuppressive therapy. If there are any negative side effects, we work to address those right away.  Some patients may experience confusion or even hallucinations after surgery due to the effect of medications or other medical changes. We encourage patients to let the medical team know this or have family members inform the transplant team so that treatment and medical care to relieve these symptoms can be provided.

What are some tools you recommend to patients as they adjust to life after transplant?

My favorite tool to recommend to patients was developed by Dennis S. Charney, M.D., and Steven M. Southwick, M.D., and published in the book Resilience: The Science of Mastering Life’s Greatest Challenges. The two studied what it takes for people to cope well with stress, and determined there are 10 behaviors that generally help. They are:

1. Positive attitude
2. Having a resilient role model
3. Establishing a support network
4. Embracing a moral compass
5. Facing fears
6. Problem solving
7. Helping others
8. Having a sense of humor
9. Being flexible
10. Attending to physical well-being

The reason I like this tool is because it’s free. There’s no copay, no side effects. These behaviors can be done anytime, anywhere.

Mayo Clinic did research a few years ago on the impact optimism had on heart transplant patients. If people reported themselves to be optimistic pre-transplant, they had better quality of life following transplant than the patients who identified themselves as pessimists did. Our findings were published in the medical journal, Progress in Transplantation. It’s important we don’t underestimate the impact our mind can have in physical healing.

Another tool I’d recommend is walking. Walking reduces stress – the brain actually grows in response to exercise! Taking a walk outside helps us put our worries aside and be in the present moment in a peaceful and calm way.

One of our researchers at Mayo Clinic, Dr. Roberto Benzo, has used meditation to help alleviate the stress associated with medical conditions. We encourage patients to use this, and you can learn more about this by reading the book “Full Catastrophe Living” by Jon Kabat Zin or visiting Dr. Benzo’s research page.

Caregivers can and should use these tools too.

What type of support can patients seek from others?

Patients often worry about being a burden to others, and it’s important they let that worry go. As human beings, we’re designed to help each other out, so that we can be strong enough to help others in the future. This is a time when it’s okay to accept help from other people.

Let others help with the practicalities of life, it’s important you don’t overextend yourself too soon. Perhaps a family member who is good with computers can maintain a CaringBridge website about your recovery so you don’t have to take calls from everyone. Try keeping a list of things you need help with so when people offer a hand, you have something for them to do. And of course, be sure to find a caregiver or caregivers to join you at appointments, keep track of medications and information.

Participating in Transplant Support groups can be a helpful way to learn from and share experiences with other transplant patients. We also encourage Transplant caregivers to get support as well and the American Society of Transplantation has recently created a Transplant Caregiver Toolkit which is available for Transplant caregivers. Mayo Clinic Connect also has a free online support group that patients and caregivers can join.

Are there any new routines you’d recommend patients adopt post-transplant to help maintain positive mental health and well-being?

I think giving back to the transplant community can have a positive effect on patients. Perhaps this means supporting the national effort to gain organ donors, or giving your time, creativity or financial support to an organization that helped you. Look for volunteer opportunities with your local organ procurement organization, transplant house, or at a national foundation like the American Heart Association or National Kidney Foundation.

Another new routine patients can adopt is honoring their donor each year on their “transplantiversary.” This is a special time to reflect on the gift you’ve been given. Perhaps write a letter to your donor’s family if they are open to having contact with you, or share your story with transplant patients who are waiting for their gift of life.

What other advice would you share?

There is often an unspoken guilt that patients feel after receiving their transplant. It’s important to free yourself from this guilt. Your organ donor didn’t die so you could have life, they died because that is the circle of life – we will all die. Your donor was just generous enough to give life through this process.

Which tools or helpful tips worked for you to improve your mental health after your transplant?

HELPFUL LINKS

• Get support from other transplant patients in the transplant discussion group on Connect.
• Explore Mayo’s Transplant Center.
• Request an appointment.