A ‘Light at the End of the Tunnel’ for transplant patients
The HeartBrothers Foundation recently hosted its first Patient Support Group, offering heart failure patients a place to hear from experts and share their fears, hopes, and tips for getting through each day.
“The best thing you can do is stay positive,” said Kyree, who has had four open-heart surgeries, two LVADs (Left Ventricular Assist Devices), and is on the waitlist for a new heart. “It’s a journey and a process. Hearing everybody’s stories is so inspiring.”
Ellen Wells, a heart failure social worker at UMass Medical Center, helped lead the group.
“We know that people who participate in support groups have better health outcomes,” she said. “Just being here is helpful—hearing that you’re not alone. It’s understandable why there are fears.”
Wells offered several suggestions to manage stress and sadness.
“There’s yoga and different therapies. Ask for help and build a support network. Sometimes people need to start some individual therapy. Sharing your concerns with your medical providers is really important. Don’t be ashamed of feelings of anxiety or depression.”
Wells also recommended patients practice some form of gratitude.
“Try to find things that you can do and focus on the small little gains each day, as opposed to what you can’t do. If you can’t find the motivation to do it for yourself, think about the people who love you and need you around.”
Dr. Leora Balsam, surgical director of the VAD team at UMass Medical, spoke about how and when to move forward with VADs and transplants. She said patients and doctors should discuss the following:
Is your heart failure advanced enough?
Is your heart failure predominantly related to a weak left side of the heart, or are both sides weak?
Do you have an illness that would hinder the effectiveness of the VAD?
Are you able to adjust your lifestyle to live safely and productively with a VAD or transplant?
Do you have friends and family that can support you?
“It’s hard to hear that this is something you should be thinking about – needing a heart transplant of VAD – but I certainly applaud everyone who is listening today, trying to learn about it. I can understand that it’s a really hard decision to make.”
‘Light at the End of the Tunnel’
During the meeting, several transplant survivors offered support to patients still waiting for transplants.
“There is light at the end of the tunnel, but you have to find ways to keep your mind occupied,” said Don Mitchell a HeartBrothers volunteer who received his transplant in 2012 after spending an entire year in the hospital.
“You have to find a sense of humor to get through it. I was ready to walk away from it many times. Toward the end I would tell myself, ‘I’m going to get to my birthday. I’m going to get to Thanksgiving.’ I hope that helps you a little bit.”
Katy – the recipient of two LVADs and a heart transplant – encouraged patients not to give up.
“You’re constantly feeling like you take one step forward and two steps back, but eventually your call comes and you get that transplant. You have to continue to look for a silver lining—your family, your friends.”
And she gave a shout-out to HeartBrother Larry Williams for visiting her in rehab and boosting her spirits.
“Larry’s the guy. He’s always hopeful and happy. He’ll make you feel so much better,” she said.
Larry responded, “Katy, you’re a real trooper. I know you went through a lot of difficult times and I was just blessed to be there.”
As part of his role with the HeartBrothers Foundation, Larry (whose nickname is the Governor) visits heart failure patients in hospitals, offering support and a shoulder to lean on.
“I got a second chance and every opportunity I have to speak to someone and their family, I’ll do it,” he said.
‘Hopefully, I won’t be hospitalized for Christmas’
Andy spoke about his wait for a new heart.
“Thank you, thank you so much for all the information you’ve given me,” he said. I’ve been on the heart transplant list since 2017. I don’t have an LVAD yet. They’re taking care of me with medication, but my heart is getting weaker. I see it every day. Hopefully, I won’t be hospitalized for Christmas.
“You’ve given me some good advice,” he added. “You’re all good people. I really look forward to sessions two and three.”
The HeartBrothers Patient Support Group will meet on Zoom the second Thursday of every month at 6:00 p.m. You can join by clicking HERE.