When a patient receives an organ transplant, it is often a second lease on life. Recipients may experience a wide variety of emotions, all while handling the medical needs associated with major surgery and recovery. Amid all this, they know that their lifesaving gift was provided by a donor who has died, creating a bittersweet circumstance that can benefit from guidance. If you have questions about any of the ideas below, please reach out to us at Aftercare@INDonornetwork.org.
Also, if you work with a transplant center that is not in Indiana, we would encourage you to have a strong working relationship with your OPO. Consider meeting regularly to collaborate and support each other and to partner as the liaisons to donor families and transplant recipients. Indiana Donor Network and the Aftercare Support Services team hope that by sharing the below materials, we can grow the field of expert care for those who have experienced grief and loss.
Correspondence with Donor Family
The decision to write is a personal choice. Some transplant recipients and families of donor heroes choose to write to each other, and others do not. Indiana Donor Network is bound by medical ethics and privacy regulations to keep the identities of donors and recipients confidential unless permission is given by both parties, and we take this privacy seriously.
An OPO may be able to facilitate communication between donor families and recipients whose identities are not fully disclosed. Direct contact is an option only if both parties are open to it. Here are examples of what an OPO would provide to the donor’s family:
- HIPAA compliant donation outcome.
- General or Detailed Recipient Follow-Up
- General: age by decade, gender, and the reasons why patients need each organ transplant, respectively.
- Detailed: age by decade, gender, social information, organ function, current health status.
Typically, correspondence starts with written letters, which can be sent with the help of an intermediary (like the OPO or transplant center involved in the donation/transplantation). This ensures a level of privacy for either side. If one or both sides would like to proceed to direct contact between a donor’s next-of-kin and a transplant recipient, they would need to complete an identity disclosure. Each party is required to sign a confidentiality release form which gives the facilitating organization the ability to share the contact information of each party, opening the door to direct contact and communication.
Writing resource kits can be offered to transplant recipients to make the correspondence process more accessible for them to write to their donor families. Correspondence guidelines, correspondence greeting cards, Donate Life swag, volunteer information and more resources are available to transplant recipients through writing resource kits.
Writing stations provide resources to recipients in order to make it easier to write to their donor families anonymously through the correspondence process. It’s a space in the Transplant Center where greeting cards and correspondence guidelines are displayed clearly to help aid the process. Writing station resources may include:
- Correspondence guidelines
- Tips about writing to their donor family
- Greeting cards or stationary
- Donate Life swag
- Volunteer advocacy information
Host correspondence workshops with recent transplant recipients to cover the following topics:
- Correspondence guidelines
- What can be sent in the correspondence?
- How does the correspondence process work & timeline?
- FAQs from donor families and recipients
- Identity disclosure – how do donor families and recipients meet each other?
- Common concerns of donor families and recipients
- Correspondence examples
- Correspondence surveys to donor families and recipients and insights to results
- What to do if you need help writing your letter?
- Resources available if you do not hear back after writing
If you would like to observe an INDN correspondence workshop, please contact us using the button at the bottom of this page.
Contact our Aftercare Support team at aftercare@INDonorNetwork.org to request our Correspondence Guidelines.
Donor families and recipients often have questions regarding the correspondence process which can include questions like:
- If I send a correspondence, how long will it take to hear back?
- Will I receive a response to the letter I sent?
Indiana Donor Network has conducted research around the trends and experiences with donor family/transplant recipient correspondence. If you have questions about this topic, please reach out by emailing Aftercare@INDonorNetwork.org.
Resources and Opportunities for Transplant Recipients
Transplant patients who either had their surgery in or reside in an OPO’s service area may have resources and/or opportunities available to them through the OPO. Additionally, we know that many transplant centers offer unique resources to their patients. Listed below are some examples of support opportunities that either an OPO or transplant center could consider implementing.
Many people who have been received an organ transplant find value in getting involved with promoting and supporting organ and tissue donation. Volunteers can support task-based efforts and/or advocacy-based efforts, such as assisting with special projects, outreach to their community, sharing stories through speaking opportunities and volunteering at community events.
Transplant centers or OPOs can consider establishing a scholarship fund for immediate family members of their organ and tissue donors, living organ donors, transplant recipients, people waiting for lifesaving organs and/or their immediate family members. Indiana Donor Network Foundation has had such a scholarship in place for over 20 years. Learn more about scholarships here.
Public events provide opportunities for sharing the lifesaving message of organ donation, and many transplant recipients value the ability to get involved in these events as a form of community activism. Events could include walks/runs, fundraisers (such as a gala or golf outing) or activating educational opportunities at public events. Events like these provide great opportunities for transplant centers to partner with their local OPO to organize and publicize. Learn more about Indiana Donor Network events.
For those fortunate enough to receive an organ transplant, they truly have been given the gift of life. However, the cost of anti-rejection medications can be a great expense for a transplant recipient who is facing a large amount of other medical bills. By establishinga charitable fund to help offset these costs, transplant centers can help ensure better outcomes with less financial hardship for their patients.
One such example of this is the Angel Fund,which is administered by Indiana Donor Network Foundation. Learn more about the Angel Fund.