Craving Connections After Transplant: Young Adults Reach Out to Peers for Hope and Healing

Be The Match Feature Story - Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his  girlfriend, Cori. That’s when he got the news that changed everything.  He had cancer and needed a transplant.  Suddenly, life as he knew it was put on hold.

“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”

In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom.  He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.

Finding New Ways to Connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”

Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.

“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.

Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”

Reclaiming His Adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner.  He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”

Kayla’s Story
Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.

“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down.  The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.

Finding Peer Support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.

Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant.  They can relate because they’ve been there.”

The New Me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”

“Transplant changed me completely,” she says.  “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”