Caregiver Lifeline Spotlight: 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.
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 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. To find a coalition group in your area please visit our Caregiver Lifeline webpage here.
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 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. Also if you are a transplant caregiver please consider joining out Transplant Caregiver Support Group