The Power of Belonging

Being part of The Mended Hearts, Inc. provides a critical support system, and you don’t need to live near a chapter or group to benefit from it. By Tamekia Reece

Any heart patient or family member will tell you that having a support system is vital for navigating diagnosis, treatment, recovery and their forever-changed lives. Although MHI chapters and groups provide that for people all over the United States and Canada, patients may not always live near a local group or chapter. However, that doesn’t mean they can’t join.

Previously, MHI members without a chapter were known as “members-at-large.” Now, in its efforts to be more inclusive, the organization is using different terminology for those members: national members.

“Members-at-large sounded like they were excluded from something, and we are really looking at inclusivity and want everybody to feel equal in the organization,” says Andrea Baer, executive director of MHI. Although they might not be a member of a chapter, national members — like all other members — play a significant role in the success of the organization.

A Big Impact

Larry Haffner, 69, of Belleville, Illinois, is one of those national members. Since being diagnosed with aortic stenosis 27 years ago, he’s had two quadruple bypass surgeries, a pacemaker, multiple cardioversions and ablations for atrial fibrillation (AFib) and a transcatheter aortic valve replacement (TAVR).

After his second bypass surgery, Haffner came across Heartbeat™ magazine at a cardiac rehab facility. He wanted to join Mended Hearts, but there was no chapter in his area. Instead, he became what is now known as a national member.

“Initially, I joined mostly to get Heartbeat magazine because it had a lot of good information about heart issues, heart-related research and stories of heart patients,” he says. Soon after, he decided to become active with the organization. “I had more time because I was moving toward retirement, so I explored the opportunities within Mended Hearts and learned there were many ways in which I could participate.”

Haffner is an active participant. One of the cornerstones of MHI is its support programs, namely the hospital visiting program in which members visit patients and their families at the hospital after a heart procedure. Since national members don’t have a local chapter and frequently aren’t near a hospital that participates in the visiting program, they usually aren’t able to do in-person visits. However, they can offer support in other ways. Haffner is an accredited visitor with MyHeartVisit™, MHI’s virtual visiting program.

“Virtual visiting through this program is a wonderful way for individuals to get involved when they don’t have a chapter,” says Baer. With MyHeartVisit, patients, family members and caregivers can find support by phone, email and video chat.

Haffner makes regular visits as well as specialized visiting through MHI’s TAVR Visiting Program for people who have heart failure or have had a transcatheter aortic valve replacement (TAVR) procedure. “It feels good talking to them and being able to help people and families,” he says. “I remember how scared I was before my first surgery and how I was trying to find information.”

Haffner also assists with the Patient Access Network referral program, a partnership between the Patient Access Network (PAN) Foundation and Mended Hearts. “PAN refers patients who are a part of their financial assistance program to Mended Hearts to receive peer-to-peer support and education,” Baer says.

“The program allows Mended Hearts to reach underserved patients through the telephone visiting program.”

Patient advocacy is another item on Haffner’s list of MHI activities. In May 2017, he and other members of Mended Hearts’ Patient Advocacy Network traveled to Washington, D.C., to meet with members of Congress and share how current and proposed healthcare policies affect heart patients. He’s also spoken to some of his local Congress members about these issues.

In addition, Haffner has addressed doctors, pharmaceutical companies and device manufacturers about the patient experience: “I understand what the struggle is and what patients and families are going through, and as I talk with medical professionals, many times they don’t really understand the patient’s perspective,” he says.

He says his goal for speaking engagements is to help medical professionals better understand the needs and wants of patients. That will, hopefully, help patients and their families have a better experience overall.

National Members Provide Help for Mended Little Hearts®

Only 125 hospitals in the United States can perform heart surgeries on children with congenital heart defects (CHD). That means families must oftentimes travel to a different city or state for their child’s surgery.

“One of the things we found, especially if it’s an emergency surgery, is sometimes families end up at the hospital without basic toiletry items and things to make the hospital stay easier,” says Jodi Smith, program director. As a fix, Mended Little Hearts® created the Bravery Bag program in 2015.

Each Bravery Bag is different, but they typically contain toiletries like toothpaste and a toothbrush, parent and family resources and comfort items such as a journal or water bottle. Where possible, there’s even fun stuff, like a Bravery Lion or other stuffed animal, Sudoku or crossword puzzles and a coloring book and crayons for siblings. “Bravery Bags are so much more than just a bag full of stuff; it’s like a lifeline to these families,” Smith says. “It helps them feel less alone.”

MLH distributes between 5,000 and 7,000 Bravery Bags to hospitals each year at no cost to the facility. Usually, bags are assembled at the local group level. MLH groups host fundraising activities or gather donations from businesses or the local community to purchase the items, then assemble the bags and deliver them to the hospital, which gives them to the families of patients.

Even if you’re a member without a chapter, you can get involved, Smith says. She recommends reaching out to the MHI national team so it can provide more information about setting up the program, work with you to determine what level works best for you (the bag program does require time and resources), give suggestions for fundraising and donation drives, make recommendations for filling the bags and to see what MLH can provide (for example, copies of the Mended Little HeartGuide).

National members can get involved with MLH in other ways, too. That includes joining the Parent Matching program, which connects parents whose children have similar heart journeys. Parent matches are done by phone or email. National members also can do virtual visiting, join MLH committees, participate in advocacy efforts, attend MH and MLH conferences and symposia, and write an MH or MLH blog post to share their story with other members, patients, caregivers and families.

“Mended Little Hearts has about 50 support groups around the nation, which doesn’t begin to cover all of the people who need support,” says Smith.

Through accredited visiting, parent-matching, Bravery Bag programs and other activities, she says, national members help MLH reach and support a greater number of people.

All Are Welcome

Haffner’s hard work is noticed — and appreciated. Such dedication is why all Mended Hearts, Young Mended Hearts™ and Mended Little Hearts® members, including those without a local chapter, are so important. “It takes a lot of volunteers to do what we do, and having people like Larry being a part of the national organization, being involved in committees, visiting virtually — all of that is a great help for the organization as a whole,” Baer says.

Everyone is welcome to become a member of MHI, and the organization is committed to increasing diversity and inclusion. As part of its goal to become more inclusive, the organization has changed its membership experience and expressly includes people regardless of race, color, age, religion, gender, gender expression, sexual orientation, disability, ancestry, marital status, political affiliation or military status.

“There are several levels of membership, and now people can join for free because we didn’t want finances to be a barrier to membership,” says Jodi Smith, MHI’s program director.

In addition to the free membership, members can join at levels that include a donation. Whether someone joins at the free membership level or at one of the donation-level memberships, or whether they’re part of a local chapter or are a national member, they are all valuable to the organization.

Reaping the Benefits

MHI strives to treat all members equally. National members receive the same benefits as regular members, including access to the discussion boards, online education, national e-news and resources. They can attend educational webinars and chapter meetings in person or on Zoom even if they aren’t a member of a specific chapter. They are also encouraged to participate in activities, including the #RockYourScar™ photo contest, the Share Your Heart™ photo and essay contests and attend MHI conferences.

Donating members receive the quarterly Heartbeat magazine, and all members can receive National News, a monthly e-newsletter that keeps them up to date on innovations in care and treatments for heart health, upcoming events and educational opportunities, ways to be involved and more.

Best of all, though, they get the sense of belonging that comes from being part of the largest peer-to-peer cardiovascular support organization in the world. “It’s really important to have that community that understands you as a person and understands the journey you’re on,” says Baer. “For most members, it’s life-changing.”

As for Haffner, although he originally joined for the magazine, he now knows being involved in all aspects of Mended Hearts is rewarding. “The gratification I get from being able to help other patients and families makes me feel good,” he says. “My work with Mended Hearts allows me to fill my time in a meaningful way.”