Finding Support Networks

Below are some ways to find the peer-to-peer support that’s right for you.

Share:

By Talia Giordano, MSW, LSW

Finding Support Networks

Becoming a transplant patient or transplant caregiver can be difficult physically and emotionally. It is common to fear the unknown and become anxious about the “wait list” because it is a completely new journey. Often support from others who are also going through the transplant journey or have gone through it in the past can be exactly the type of support a patient or caregiver may need. However,  finding that kind of support can prove challenging if you live in a small town or are far from your transplant hospital. Below are some ways to find the peer-to-peer support that’s right for you.

The Transplant Hospital

Many transplant hospitals have support groups for patients and their loved ones. The groups are typically held monthly and sometimes even scheduled around clinic times, in order to make them more convenient for patients. Please talk with your transplant social worker to find out if your hospital holds a transplant support group.

Coalition Groups

Coalition groups are people who have joined together for a common purpose, such as organ donation and transplantation. In Gift of Life Donor Program’s service area, numerous coalition groups meet monthly to discuss ways to educate and inform individuals in the area about the importance of organ and tissue donation. Many of the attendees are transplant candidates or recipients as well as organ and tissue donor family members. While these groups are not necessarily support groups, they do allow transplant patients to meet families like them in their area, which is a great way to develop new support systems.

Peer Mentor Programs

In a peer mentor program, you are paired with another patient or caregiver who has already been through what you are going through. Typically, you would be paired with someone who is around your age, who has successfully been through the same type of transplant and is doing well, both emotionally and physically. Please speak with your transplant social worker to see if your hospital has a peer mentor program. Please note, this type of support may be more difficult to come by since not all transplant hospitals offer peer mentor groups.

The Internet

The internet offers a surprising amount of support resources for transplant patients! There are hundreds of websites available for transplant patients, which can be wonderful on one hand but also overwhelming for the typical user. A good place to start for someone who is less internet-savvy is the UNOS-run, patient-friendly site called Transplant Living. It has a community section with stories from other recipients and a way to find support groups in your area.

Another great way to find support groups is through Facebook. If you already have a Facebook account, simply go to the main page and search the type of group you are looking for. For instance, a heart transplant patient might search “heart transplant support group.” You can then reach out to the group leader to learn who is a part of the group, what is discussed if it is a private group, and how to get involved in order to get the most benefits. A great feature of Facebook support groups is they can be accessed from anywhere in the world. In addition, if you are unsure about joining a support group, Facebook is a great way to test the waters in a less intimidating setting while maintaining some anonymity.

If you would like more help locating a group in your area please feel free to email us at CaregiverLifeline@GiftofLifeFamilyHouse.org

News & Events

Thomas Jefferson University Hospital Pledges to Support Family House

Jefferson Hospital made a $250,000 pledge to support transplant families at the Family House.

We've Got You, Mom

Nicole became her mother Donna's caregiver and together, they navigated the transplant journey.

Corporate Spotlight: Laundry Made Easy

Our friends from Hercules Laundry generously donated five new washer and dryer sets!

Getting by With a Little Help From our Friends

As part of our Caregiver Lifeline Program, we bring in therapy dogs to spend time with our guests!

The Flight For My Life

Karen's life-saving transplant relocated her and her family over 350 miles from home.

#FacebookFUNdraiser: Anthony Vetrano

Learn why Anthony decided to host a Facebook fundraiser for the Family House!

From Hospital to Home

"My stay at the Family House gets better each time," says Lauren, a past Family House guest.

Grown Up and Giving Back

Read about Mya, a liver recipient and employee, and her experience here at the Family House.

Families Joined by Love and Life in Family House Kitchen

The Hess and Palmer families come together to celebrate the life of Mason Hess.

Family Close By

“Having my wife nearby was especially helpful to my recovery,” Tim says.

#SupporterSpotlight: Facebook Fundraisers

Did you know you can hold an online fundraiser to support the Family House on Facebook?

Gift of Life Volunteer Recognition Ceremony

Gift of Life Family House honors volunteers at the Gift of Life Volunteer Recognition Ceremony.

Peter Mansaray, father of a heart recipient and past Family House guest.

A Father & Son Journey

"...by the time we left [the Family House], I left with a whole family.”

Legacy Society members Elizabeth and David Kennedy.

Leaving a Legacy

David and Elizabeth are leaving a legacy with planned gifts to the Family House.

Stay Connected

Sign up to receive email updates featuring transplant stories of hope and ways you can get involved with the Family House.

  • This field is for validation purposes and should be left unchanged.