At the April gathering of the HeartBrothers Foundation Patient Support Group, people shared memories of Larry Williams, who passed away from COVID complications one year ago. Williams, a heart transplant survivor, was an active HeartBrother who visited hundreds of heart failure and transplant patients in hospitals around Boston.
“Larry had that quality,” said HeartBrother Board member Mike Ashworth, “that he could walk into a room and change the dynamic immediately. Larry all by himself visited more patients than anybody in the HeartBrothers. He was a great friend.”
HeartBrothers Co-founder Pat Sullivan said, “He lit up a room. He lit up a big room.”
“He was the glue that held a lot of things together,” said HeartBrother Hamid Mahdavy.
“He was the glue that held my life together,” said Susan, Larry’s widow. “It’s certainly unglued now.”
“Larry saved a lot of lives,” Sullivan added.
Several people went on to share updates on their symptoms, medications, hospitalizations, and more.
“I just had an ablation this week. I’m still feeling a little beat up,” said one man who suffers from atrial fibrillation and ventricular tachycardia.
“I struggled with afib for nine years,” said Mahdavy. “I had three ablations and tried every medication in the book. There’s a new procedure out there called convergence. It is supposed to have a higher success rate.”
According to the Cleveland Clinic, “The convergent procedure is a combination of minimally invasive surgical treatment with catheter ablation to provide the best results for patients with persistent atrial fibrillation.”
A woman talked about a setback nearly a year after getting her new heart.
“I had a transplant last May and everything has been great until about a month ago. I had two, level-two rejections and some kind of toxicity that gave me all kinds of vestibular symptoms,” she said. She is getting new treatment, including physical therapy.
“This is a journey that doesn’t really end,” Sullivan said.
People also talked about the importance of skin checks. Certain transplant medications can make patients more vulnerable to skin cancer.
Sullivan said he goes to the dermatologist every 90 days. “They find more [cancer] every single time.”
Another man from New York told the group that he is on the heart transplant list, but doesn’t want to wait in the hospital even though it might move him up the list. He shared some of his story.
“I had a heart attack and they put in six stents. I was a smoker and didn’t eat properly. And my dad passed away at 61 from a heart attack. After the stents, they noticed my kidney enzymes were high. I went into tachycardia. I was shocked over 100 times. And they brought me back from death four times. I flatlined four times. They just didn’t give up.”
“Do you talk to anyone about your PTSD?” Sullivan asked him.
“Yeah, I do,” the man answered. “I’m also a 9/11 survivor.”
The group also discussed challenges getting Allomap and Allosure testing, which some hospitals are no longer offering, opting for heart biopsies instead. Several patients agreed that the blood tests have been helpful in predicting their risks for transplant rejection.
The HeartBrothers Patient Support Group meets virtually the second Thursday of each month at 6 p.m. and is open to all. Learn more HERE.