Transplant patients – IU Health provides support before, during and after

They are sick, they are nervous. Their lives change drastically. Here’s how IU Health helps patients going through the transplant process.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

The saying is: “You only know what you know.” For some people that also means: “You only truly understand it if you’ve lived it.”

Imagine the fear of having an organ shutting down. Now imagine the nerves of facing a major surgery. Add to that responsibilities outside the realm of health – family, work, school.

“Every patient at IU Health preparing for transplant undergoes a psychological-social evaluation,” said, Clinical Psychologist, Dr. Rachel Holmes. In her role, she administers assessments to determine if there are any risk factors that may need to be addressed prior to transplant.

For instance, if a patient’s liver is failing and the patient is facing substance abuse issues, there may be a need for treatment. Organ donors also undergo psychological evaluations to ensure they understand and are able to withstand any side effects.

“I love donors. They’re the nicest people. By and large donors they are ready to go through the process. We help prepare them because there are some stresses going through surgery and recovery,” said Holmes. “With both donors and recipients the key to a successful transplant is a complete understanding of the process – do they have caregivers at home, do they have a support system in place.”

One-on-one meetings are the beginning. “A lot of patients haven’t experienced mental health treatment so I like being an introduction to mental health and letting them know that I can help and they are not alone,” said Holmes who was drawn to the medical profession in part because her mother and aunt were both nurses.

Throughout the transplant process, Holmes along with Dr. Anahli Patel, facilitate the following free support groups:

> General Transplant Support Group:
Open to patients, families and caregivers in any stage of the pre- and post-transplant process for any type of organ. An informal virtual meeting facilitated by behavioral health professionals. When: First and Third Thursdays of the month, noon-1:00 p.m.

> Caregiver Support Group: Open to all caregivers of those in any stage of the pre- and post -transplant process. An informal virtual meeting facilitated by behavioral health professionals. When: Second Thursday of the month, noon-1:00 p.m.

> Young Adult Transplant Support Group:
(Aimed at those patients generally 20 years and older along with their caregivers). Provides pre- and post-transplant patients of any type of organ with emotional and informational support. When: Fourth Thursday of the month, noon-1 p.m.

> ADAPT: A 4-week Skills Workshop for patients who received a transplant within the past six months. This workshop addresses common themes, concerns, and unique adjustments many patients experience after transplant. When: Mondays, noon to 1:00 p.m.

For additional information on the support groups: Contact pwilkin1@iuhealth.org or rholmes1@iuhealth.org.

“Everybody has a different journey, but we all share similar experiences,” said one patient who received a liver transplant. “Through the support group we can talk about those similarities and also bring up topics that others outside the groups may never have heard of,” he said.

“Some of it is sharing our stress and even depression. Some of it is practical information like getting a raised toilet seat to make life easier at home,” he said. “We also help each other understand expectations and limitations like when I want to carry large bags of mulch in the yard but know that I’m not strong enough yet.”

Caregivers may talk about balance and boundaries – where the wife once distributed all the medication prior to transplant, it may be time to encourage the patient to take on that role post transplant.

The groups can range from 15-30 participants and many establish friendships that extend outside the support groups.

“A frequent theme is guilt,” said Holmes. “It’s complicated after transplant because some people feel an added pressure that they should feel great but there’s still a lot of emotion to unpack.” Another thing that comes up frequently is a sense of gratitude and an eagerness to thank their donor, she said. “Timing is everything for that process. Some write letters and don’t hear back. Others share that they’ve made that connection.” Holmes also sees a lot of post transplant patients eager to give back and donate their time to community efforts such as the Indiana Donor Network.

“Patients frequently feel like their medial teams have helped prepare them for the medical component, but not necessarily the psychological component,” said Holmes. “Transplant can be isolating and the support groups give them a sense of community. When everything in their lives change from being very sick to renewed health, they have a group of people to help them through it.”

When she’s not working, Holmes enjoys reading, traveling, biking, hiking, and spending time with her Golden Retriever, “Lady Bird.” She recently began a hobby passed down by her grandmother – sewing. She enjoys making baby quilts for her friends.