If you’ve ever felt alone or like nobody understands what you’ve been through or have experienced changes in your roles, relationships, or physical abilities after transplant, you’re not alone. Both patients and caregivers often go through emotional and physical ups and downs that may impact quality of life (overall well being). Whether you’re experiencing the good or the not-so-good after transplant, have you thought about talking with someone who’s been through it? Ed knows firsthand how much it can help.
Ed had his ups and downs after having a transplant in 2011 for Acute myelogenous leukemia (AML).“Going through transplant and recovery can be tough,” he said. While doctors prepared him for what to expect, “It would have been helpful for me to talk with someone who had been through transplant, to learn more about it, to better prepare myself, to ask questions like “has this ever happened to you? What did you do?”
“It can be difficult to absorb and fully comprehend all the information you’re getting from your doctors,” Ed added, “Talking to someone who’s been through it is less stressful. It’s a conversation with plenty of opportunities to ask additional questions and get clarification.”
Today, Ed is a Peer Connect volunteer—someone transplant recipients and caregivers can turn to for advice or as a shoulder to lean on. “Talking with someone who has been through it can be really helpful. I think it’s important for patients and caregivers to know it’s alright to be afraid, scared and apprehensive about their situation, and that the emotions they are feeling are normal.”
The Peer Connect Program can put you in touch with trained volunteers—who are transplant recipients and caregivers—who are there to listen, answer your questions and share their own transplant experiences. “The program didn’t exist at the time I had my transplant, and I really wish it had,” said Ed.
Ed’s wife and caregiver Kate is also involved in the Peer Connect Program. “Because Ed and I lived near our transplant center, we were discharged to home just two weeks after the transplant, and made daily trips to the clinic,” Kate said, “Because there was no Peer Connect Program, we didn’t have the opportunity to talk to any other patients or caregivers until Ed was feeling well enough to attend some support groups.”
Ed and Kate found it helpful to hear what other patients and caregivers were experiencing, and what was normal. They also learned that they weren’t alone—and it was different than hearing it from a doctor.
Get practical advice and emotional support
Transplant patients and caregivers use the Peer Connect Program to find out how others have dealt with post-transplant issues like fatigue (tiredness), not feeling well, poor appetite, food not tasting good, and other side effects. They can also get encouragement and emotional support to help cope with quality of life changes. And while your medical team will always be your first source of information, talking to a peer can support you in other ways.
“Depending on individual situations after transplant, people may have continuing transplant-related issues and complications,” said Ed. “This can be hard emotionally. People want to know what it’s like, what recovery is like, what helped you and your family. Having gone through it myself, I can fully empathize.”
Peer volunteers benefit, too
“We were about a year after transplant when the Peer Connect Program began, and we were among the first to volunteer,” said Kate. “We really wanted to be able to offer that kind of support to others. If you’ll excuse the cliché, we feel honored to be able to walk along side other patients during their transplant journey.”
Fellow Peer Connect volunteer and transplant recipient Marty agrees. “I volunteered for the program because I like helping others. I understand the need to speak with someone who has gone through the experience. I feel a unique satisfaction in being able to do something that few people can do. It’s like throwing a life preserver to someone in open water. ”
Today, Ed describes his life as pretty much back to normal. “I’m able do most of the things I did before I was sick, and my medical issues now tend to be those of an active 70-year-old male. I think sharing my experience with others who are in an emotionally stressful situation can positively benefit them.”
Interested in Peer Connect?
Want to talk with someone who’s been there? Or are you interested in becoming a peer volunteer?