When the World Moves on From COVID BUT You Can’t

HeartBrothers Patient Support Group Offers Advice for Heart Failure & Transplant Patients

With nearly all COVID restrictions now lifted, life is getting back to normal for most Americans, but not immunocompromised heart failure and transplant patients. For them, COVID is still a clear and present danger.

A simple trip to the grocery store can feel even more dangerous now for heart failure and transplant patients, since most people around them are unmasked. That’s why it’s even more important for patients to continue taking precautions like wearing masks and staying socially distant according to infectious disease and transplant doctors.

“I can only imagine that anxiety for many of you might be through the roof at this point,” said Ellen Wells, a social worker at UMass Memorial Medical Center. Wells spoke at the HeartBrothers’ Patient Support Group on March 10 and offered the following tips on how patients can feel less anxious as the world unmasks around them:

  1. Accept the reality that you cannot unmask. You are in different circumstances.

  2. Acknowledge your stress. Don’t feel pressured to jump back into pre-COVID routines.

  3. Make a bucket list for when case counts go down, drawing from things you missed most during COVID.

“And I can’t stress this one enough," Wells continued. "Communicate your boundaries and limits.” If you find yourself in a crowded place, “You can tell people ‘I’m not comfortable being here. You’re standing too close to me.’ You can do it in a way that people will understand,” she said.

Heart transplant survivor McKinley Hackett offered, “I have a mask that says, ‘I’m Immunocompromised.’ If I’m somewhere and somebody comes in a space too close, I’ll tell them I need more space. I’ve also visually told them I’m in an at-risk position. People have respected that.”

Another participant agreed that communication is key, especially right after a transplant. “My wife and I set up a conference call with all the family members about what I went through and what the rules of the road were going to be. Masking was one.”

Follow the Rules

“I look at it more broadly, beyond COVID," said Hackett. "I’m concerned about all germs. It’s all new for me.”

“You just follow the rules that your doctors tell you," responded HeartBrothers Co-founder Pat Sullivan. "Be vigilant. If you do what they tell you, you’re good. If you follow the rules and do the right thing, hopefully it turns out with a good outcome.”

Debbie Bodell received her heart transplant 18 months ago at Massachusetts General Hospital. “I follow every single rule,” she said. “I mask up everywhere I go. My doctors gave me the okay to go in my community center pool as long as I stay away from anybody. If I go to my exercise classes, I have my mask on. “Don’t go and hang out with buddies at a bar,” she laughed. “That’s my experience.”

More Tips

Wells offered more suggestions, including

  • Focus on what you can control—like getting vaccinated.

  • Remember you are not alone.

  • Recruit a vaccinated & masked buddy for outings.

  • Go shopping at less crowded times. “Dip your toe out there a little bit at a time,” she said.

  • Enjoy take-out or a picnic—weather-permitting.

  • Exercise as best you can.

  • Keep connections with others.

COVID is a tough adversary and can still infect the vaccinated, even those taking every precaution. Conversation shifted to the deeply felt loss of HeartBrother Larry Williams, who had passed away of COVID-induced pneumonia the previous evening. “Larry was the most vigilant man at HeartBrothers,” said Sullivan. “We should all take a little bit of a lesson from the thinking that it won’t happen to me. Take caution, realize that just because everyone else can do it (go out without a mask), we are different.”

HeartBrothers volunteer and transplant survivor Don Mitchell emphasized that balance is also important. “You really have to find your comfort zone and what makes sense for you. COVID changed the game for all of us.”

The HeartBrothers’ Patient Support Group meets virtually the second Thursday of each month at 6 pm ET. We welcome you to join us.