The importance of protecting your mental health was a main topic at the recent HeartBrothers Patient Support Group. “While you’re focused on the physical aspect of your transplant, do not forget the emotional and mental aspects,” reminded HeartBrother Hamid Madhavy.
Several new people from around the country joined the virtual meeting on August 11, including social worker Kathleen Pickrel from Banner Health Systems in Tucson, Arizona, where the HeartBrothers are now supporting heart failure patients.
“You definitely made someone’s life a lot easier,” Pickrel said about a transplant patient who recently received a financial grant from the HeartBrothers Foundation.
HeartBrother Don Mitchell, who is a heart and kidney transplant recipient, spoke more about mental health impacts.
“I’m a veteran,” Mitchell said. “In my experience, PTSD from a transplant is very real. One of the biggest aspects is having another person’s heart in your body.”
Mitchell’s heart donor was a 21-year-old man.
“My son was the same age. How do you rationalize that? People need to talk about it and be aware of it. I walked a lot and found myself talking to the young man. Your mental health is important in your recovery. Pay attention.”
Mahdavy had similar feelings about his donor, a 22-year-old man who died in a car accident.
“Today would have been his 29th birthday,” said Mahdavy. He remembers how hard it was to reach out to his donor’s mother.
“The fact that my donor helped so many people gives her a lot of solace. I struggled immensely writing that first letter to her.” Mahdavy and his donor’s mother have become close friends. He even walked her down the aisle at her wedding.
Pickrel, who lost her husband to a heart condition, urged people not to feel bad about receiving a lifesaving organ.
“My husband was going to die anyway. The people who received what he gave… that was a gift that could keep him going on. I would hope you wouldn’t feel guilty. You caused nothing.”
One woman encouraged people to listen to a Bonnie Raitt song, “Just Like That,” about a mother meeting the man who received her son’s heart. You can listen to it HERE.
Heart transplant survivor McKinley Hackett said journaling about his experiences really helped. He even turned his journals into a book, “Meeting Death and Learning to Live.” (Learn more about Hackett and his book in our HeartBrothers blog HERE.)
Hackett spoke about protecting yourself from toxic people.
“When I was hit with someone not loving me, I sought some professional help and moved very quickly with distinct goals.”
Mitchell agreed that it’s important to surround yourself with loving, supportive people.
“If there’s someone really toxic, you have to distance yourself because that can bring you down. If you’re taking prednisone, you can be an emotional wreck.”
Also at the meeting, transplant patients and caregivers shared stories and asked questions about recovery times, medications and staying safe from COVID. They ranged in age from 33 to 74 years old.
“I’m three months out [from transplant] and I’m going stir crazy. I’m just waiting to get a little bit better and get back to work,” said one man from Connecticut.
“My transplant was May 14 and I’m still navigating the medications, side effects, changes, and tests. I’m trying very hard and following what my doctors, who I love dearly, tell me to do,” said a woman.
One man joined from the Tufts Medical Center cafeteria while his wife waited upstairs for her second heart transplant. Her first donated heart was damaged by infections.
“She’s back on the transplant list,” he said. “I’m here to learn more about other people’s perspectives.”
The HeartBrothers Patient Support Group meets on the second Thursday of each month and is open to everyone. Learn More.
The HeartBrothers Foundation serves thousands of heart failure patients and their families with financial and emotional support, webinars, the Patient Support Group and other resources. It also runs the HeartBrothers House in Boston, where patients and families can stay during treatment.