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Patient Support Group: HEART FAILURE Patients Share Stories & Advice

From hospital rooms and living rooms across the east coast, Heart Failure patients joined the September HeartBrothers Patient Support Group.

One woman spoke from her husband’s hospital room. He received a new heart in July and was still waiting to go home.

“His heart is doing fabulous, we just have to get the rest of his body working again,” she said. “He can move his hands and forearms.”

HeartBrother Hamid Mahdavy offered sympathy—and hope.

“I spent 30 days at Tufts [Medical Center] and another three weeks at rehab before I could go home, hobbling on a cane. I know it’s a tough recovery. Some people go home after a week. Some take longer. Just hang on, brother.”

His wife added, “I stayed at the HeartBrothers House and it certainly makes it a lot easier to get to Boston from Rhode Island. I just want to say thank you to everybody who stopped by and reached out. I feel like I have a whole new group of friends. I don’t know how we would’ve gotten through this without the HeartBrothers.”

(The HeartBrothers House offers luxury apartments near Boston’s top hospitals for Heart Failure patients and their families during treatment. The cost is just $40 a night. Learn more about the HeartBrothers House HERE.)

One man shared that his wife, who had just undergone her second heart transplant, was coming home the next day. Her first donated heart developed stenosis, so she needed a second transplant.

“You see her going through mental hurdles and challenges,” he said. “The recovery… you know your body is going to do it. The mental is the other 70 percent.” He said the hospital’s therapy dog, Bob, really helped boost his wife’s mood, along with a mini horse that visited.

Another man asked if anyone else had suffered a stroke after LVAD (Left Ventricular Assist Device) surgery, as he had.

A young man answered that he had a series of strokes before his transplant.

“The part of my brain that it hit deals mostly with visual processing stuff,” he said. “That has gotten a lot better than it was originally. There were long-term consequences that I’m learning to deal with.”

“Boy, we should all start a softball team,” joked the LVAD patient.

HeartBrother Don Mitchell asked the group if anyone had received the new Covid vaccine.

“I got mine today,” said one caregiver. “I really want to make sure I can do everything to help my husband.”

The group then shared advice they’d heard from their own doctors about when to get the new vaccine. They also discussed the best time to get Evusheld injections, which can boost immunity.

Patients spoke more about the importance of addressing one’s mental health, which has been a common topic at recent meetings.

“I was stripped of my armor all the way down to nothing,” shared McKinley Hackett. “It took me a while to realize that I was emotionally broken. Having a therapist was invaluable to repairing my mental armor.”

Another man added, “Some hospitals set you up with 10 therapy sessions before you’re discharged.”

The LVAD patient asked how doctors know when a patient is ready for transplant. HeartBrothers members encouraged him to speak with his care team.

“Okay, thank you,” he answered. “It’s good to have a support team.”

“We’re here every month with whatever help we can offer,” Mahdavy said.

The HeartBrothers Patient Support Group meets virtually the 2nd Thursday every month at 6 pm ET.

The group is free to attend and open to all. Click to learn more.


Don’t miss a heartbeat—subscribe to the HeartBrothers e-mail list, engage with us on Facebook, Instagram, Twitter, YouTube, and LinkedIn, and please invite others to join our community.


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