My Heart Transplant Journey: #22 – Support Groups

By Phil Liaboe

SUPPORT GROUPS

An important element to my heart transplant journey has been the support group I participate in sponsored by Beth Israel Deaconess Medical Center. We meet via video conference once monthly. Our support group is championed and managed by the Social Worker at the medical center. She is a beloved member of the group and the glue that holds us all together. She is our leader.

The group is somewhat dynamic. There are patients who participate every month and others who participate less frequently. Attendees are men and women from all walks of life and all (adult) ages. Interestingly, some people received their transplant someplace else, but are now being treated post-transplant at Beth Israel. Since the medical center is performing heart transplants on a regular basis, new faces show up most months. Curiously, not as many as we would expect.

During these sessions there is generally a guest speaker or specific subject for discussion that is loosely followed. Examples are:

• The dietitian on the transplant team was invited to discuss and answer questions about all of the various recommended restrictions concerning food.
  
• A cardiologist also on the transplant team attended once and discussed various aspects of organ anti-rejection along with a Q & A session.
  
• The social worker led an exercise that provides strategies for managing anxiety and depression and the introduction of a concept called the Window of Tolerance.
  • https://youtu.be/VD8hhboXYTI?si=jCXmeduXUy2NtX_e

Much of the time is spent in a free flow discussion. We go where the interest leads. Generally the only thing that is asked of attendees from a participation standpoint is to introduce themselves and tell the group when their transplant occurred. People can talk, or just listen. We have had participants that were 2 weeks post-transplant and some who had their operation several years ago.

We are all “Kindred Spirits”. Certainly, our caregivers understand everything about what we are dealing with. Close friends and family members know what we have been through to varying degrees. The people in this support group know exactly what we have been through. No explanation needed.

It’s interesting that there are parts of this journey that are very consistent patient to patient. At the same time, we have all arrived through widely divergent circumstances. One person in our group has met his donor’s family and it was hopeful to me to hear how fulfilling that experience and on-going relationship is for him.

In nearly every monthly session 3 very clear messages emerge.

1. Each person has deep gratitude for all the people at the medical center that made their extended life possible and are highly complimentary of the care they have received.
   
2. Our caregivers are held in the highest regard and people freely admit they could not have made the journey alone.
   
3. There is respect, honor and sense of duty to the donor whose life ended and provided the life saving organ entrusted to them.

There is also a support group for Caregivers sponsored by the medical center. For those seeking additional support Facebook, Reddit and other web based social media sites have support groups for every aspect of my transplant including sarcoidosis, and cardiac sarcoidosis. I am not a regular user of social media (except to promote this blog); however, my wife Lauren checks in on these and plucks an interesting comment or idea from time to time.

If you are reading this because you have had a transplant, or are in advanced heart failure, or are on the transplant list, I would encourage participation in a group like this if it’s offered. I feel a strong connection to the people I have met. We even had one session where we met in person at the medical center. Some who live near each other have met for coffee or lunch on occasion outside of our monthly session. I meet with 2 other guys on a regular basis who are on not part of this support group but have had similar heart issues and we have become good friends.

For me, there is a dash of loneliness to this journey. Nothing crushing. Just flashes here and there. It’s hard to answer the question, that has dissipated somewhat over time. These kindred spirits I meet with every month and my loving wife, family and friends have helped relieve that. When someone in the support group is talking about a particular personal struggle or sensitive challenge you can see the kind smiles and heads nodding in knowing acknowledgement. There is really nowhere else that happens for me. For that reason I will be there every month I am able. For the regulars. For the newcomers. And for me.

© 2026 Phil Liaboe. All rights reserved.