Be kind to yourself. That was a common message at the July HeartBrothers Patient Support Group, which welcomed many new people, including a transplant patient still in his hospital bed and one who had been home only a week.
“We all have a little PTSD (post-traumatic stress disorder),” said HeartBrother Hamid Mahdavy, who organizes the virtual Patient Support Group. “Be kind to yourself and to your brain. Give yourself a break. Give yourself a lot of breaks.”
The HeartBrothers Foundation serves thousands of heart failure patients and their families with emotional and financial support, educational webinars, the monthly Patient Support Group and other resources. It also runs the HeartBrothers House in Boston, where heart failure patients and families can stay during treatment.
A man named Tom tuned in from his hospital bed at Brigham and Women’s, just one week post-transplant.
“When I was 14, I passed out roller blading,” he said, sharing his story. “I was eventually diagnosed with cardio myopathy. Since then, I had been maintaining a decent ejection fraction. But at the beginning of June it got pretty dire. They put me on ECMO (extracorporeal membrane oxygenation) for 10 days and put me on the transplant list. I only had to wait three days.
“Hopefully, I get discharged home to start the recovery process,” Tom added.
Everyone at the meeting offered congratulations.
“Welcome to the community,” Mahdavy said. “It’s great to have you.”
Another man joined from home just one month after his transplant and one week after leaving the hospital.
“In just that one week, I’ve made a lot of progress,” he said. He described difficulties, though, walking in his home, especially climbing stairs. He wondered if that was normal.
“They told me to take two steps up, two steps down holding into the handrail,” shared Mahdavy. “You’ll be surprised how quickly you’ll be moving up those stairs.”
A woman who received her new heart in May added, “You have to persevere with forward motion, a little bit more each day and you’ll get there.”
And a gentleman, who received his transplant several years ago, warned, “Exercise and stay active but don’t overdo it. Stay in constant contact with your transplant team. No question is too petty or small.”
The woman who had her transplant in May asked what people are doing to protect themselves from COVID. “I know I don’t have a very strong immune system right now,” she said.
Several people offered advice, including Mahdavy. “After my transplant I stayed home for about six months. I didn’t leave the house until they cleared me to go to cardio rehab. And I didn’t have very many people come over. I wore a mask whenever I left the house. And that was before COVID".
“The first year is critical,” he added.
Mahdavy reported that his doctors just authorized him to get his 5th COVID shot (his third booster). Several patients reported receiving Evusheld injections to boost their immunity against Covid.
People asked questions and shared stories about their medications, too.
“On steroids, how are you all handling that?” asked one man. “I shake. As I come off that in six months, I’ll be doing much better.”
Other people talked about their iron levels.
“Has anyone had issues with low iron, being anemic?” someone asked.
HeartBrother Ambassador Karen Klimczak, who joined the meeting while going for a walk in the woods, said she received iron infusions, which gave her a lot more energy.
“Sometimes we need a boost and then it’s easier to maintain,” she said.
Klimczak, who received her new heart 18 months ago, shared how hopeful and grateful she feels many days.
“I feel blessed to have a strong, healthy heart and a great support network to help me out as a new heart recipient, a mom and somebody who’s had some struggles with confronting the fact that I’ve had a heart condition for a long time.”
The HeartBrothers Patient Support Group is held the 2nd Thursday of every month at 6:00 p.m. It is free and open to all. Click to learn more.