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Patient Support Group: New Faces, Lively Discussions

Several new people joined the HeartBrothers Patient Support Group in June, asking questions and sharing stories. HeartBrothers Co-Founder Pat Sullivan talked about his tenuous journey to transplant.

“I had heart failure for 18 years. I waited too long for a transplant and I crashed after a procedure where I lost a lot of blood and the heart wouldn’t bounce back. The doctor told me, ‘I hope your affairs are in order. Today is your last day on earth.’ I vehemently disagreed with the diagnosis. I’m happy I was right and he was wrong.

“It was quite a ride,” Sullivan added. “Here I am nine-and-a-half years later with all of you.”

McKinley Hackett received his new heart in May 2021 and asked about staying safe from threats other than COVID.

“I call it the Before Times, before COVID. What are your strategies for protecting yourself from things like pneumonia or listeria?”

Sullivan said vigilance is key.

“All of us post-transplant are one cold away from the hospital. That keeps you in check. I don’t go to schools. I go to church remotely. A lot of common-sense stuff.”

HeartBrother Don Mitchell added, “I used to substitute teach in an elementary school before transplant, but I had to stop. I started getting colds. I won’t eat food that’s in the refrigerator for more than two days.”

It’s important to remind family and friends that you can be vulnerable to infections, said HeartBrother Hamid Mahdavy.

“The circle around you needs to be sensitive. I have three grandchildren. If one of them has the slightest sniffle they don’t visit and they won’t let me visit. The first year is critical. The body’s getting used to the new organ and your immune system is topsy-turvy.”

After a while, you do settle into routines, people agreed.

“It never leaves your mind, but do you relax a little bit more,” said Mitchell. “I’ve flown on planes. I wear my mask.”

Julia Bell, who joined from North Carolina, wondered if anyone had gone into a coma after transplant.

“The toughest part was that was in a coma for eight days,” she said. “The surgeon told my family he wasn’t sure if I would wake up. Without knowing what was wrong, they couldn’t give much reassurance. But I did finally wake up one day and complained about how loud the TV was.”

Several other patients assured her that they had also slipped into comas - and that she wasn’t alone in that.

Bell also shared a pet peeve. “I get tired of people saying, ‘Oh, you look perfect.’ I want to slap them because I may look fine on the outside, but they don’t understand what managing a heart transplant is really like. I don’t want to complain but I do want them to be a bit more concerned.”

Mental Health Support

The group also talked about mental health and the importance of getting support.

“We know that stress impacts everyone physically and mentally,” said Ellen Wells, social worker at UMass Memorial Health Center in Worcester, who frequently sits in on the Patient Support Group.

“We know that people who belong to support groups feel better.”

Sullivan asked the group, “How many of you have had nightmares or hallucinations?” Almost everyone raised their hands or nodded.

“I had tigers jumping out at me when I got home,” Mitchell said with a laugh.

“I told my family to sell the house because there were aliens coming,” Sullivan remembered.

“I saw fuzzy purple people - and a water park in the elevator,” said HeartBrothers Co-Founder Bob Romer.

“Hallucinations and nightmares are common but unless you talk about them, no one knows,” Sullivan said. “And you can’t talk to a normal person about it because they can’t experience what we’ve gone through.”

Sullivan reminded everyone that they’re in a small club - only about 3800 heart transplants are performed a year - but they’re not alone.

“I’m really glad that there’s this opportunity,” said Steve Yakutis, who had his transplant in 2019. “I find it really helpful to hear other people’s experiences. There are incredible days of joy and gratitude … and days like, what is going on? People who haven’t been through this don’t necessarily know how to respond. It’s good to meet with people who can say, ‘Right, I’ve been there.’”

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