When HeartBrother Hamid Mahdavy went through his life-changing journey of undergoing a heart transplant back in 2016, he really needed to talk to someone who had also experienced the same thing.
That’s when he came up with the idea for a patient support group, with the goal of helping other heart failure patients and their loved ones who are on similar journeys and navigating through their health issues.
“This is something that, when I was going through my journey, I desperately needed; to talk to someone else who underwent a heart transplant,” said Mahdavy. “I had no idea what a person who had had a transplant looked like. It was such a foreign concept. I felt there was a huge need for this.”
That was nearly two years ago. Now, Mahdavy is among about a dozen people who meet monthly at the HeartBrothers Foundation’s Heart Failure Patient Support Group (PSG), hosted by the HeartBrothers Foundation in collaboration with a rotation of cardiac specialists hailing from New England-area heart failure centers and hospitals.
The group meets virtually on the second Thursday of each month at 6 p.m. ET.
“Participants often emerge from each PSG a little stronger each time, Mahdavy said. “I think they leave the meeting feeling better than they started.”
And after several minutes of speaking words of care, concern and encouragement with each other, this group is a Band of Brothers, in every sense of the word.
“Unless you've been through it, you can't understand it. It's impossible to describe a heart transplant until you get one,” said HeartBrothers Foundation Co-Founder Patrick Sullivan.
This virtual group session is a place where patients can “go to air their fears, their concerns and to just touch with peer-to-peer support,” Sullivan said. “It’s now proven to be the best remedy for the anxieties of any severe illness and long-term disability.”
The group shares personal experiences, coping mechanisms, and strategies on how to address heart failure and face and heal from heart procedures.
During the recent May 11, 2023 session, the group welcomed a new member, a Boston man diagnosed with heart disease 25 years ago, who underwent a recent heart procedure and may require a heart transplant in the future.
“Make sure you advocate for yourself,” HeartBrother Donald Mitchell told him.
Participants openly discussed the benefits and side effects of various medications as well as other heart treatments and procedures.
“If you're not feeling well, especially the first year, they're going to change your medication doses continuously,” Mitchell said. “So, if something's not feeling right, let [the medical professionals] know, don't be shy.”
Mitchell, a military veteran who underwent a heart transplant in 2012, compared this support group to other support groups he has been involved with that help veterans who have post-traumatic stress disorder.
“It's a different scenario but it's the same thing,” Mitchell explained. “It's a long road, but it works. Once patients have had a transplant, they're more open. The whole process of sharing with each other emphasizes to everyone that we are not alone."
The HeartBrothers Patient Support Group meets virtually on the 2nd Thursday of every month at 6 p.m. EDT. The group is free to attend and open to all. Click to learn more.