Sandra Barnes still remembers how difficult it was to walk before her heart transplant in 2006.
“I was a teacher, and I had to climb 10 steps to get to my classroom,” Barnes says. “I would dread getting out of the car because of those 10 steps. Walking long distances would make me nauseous, and I would pass out. That’s how I knew Caroline would have problems—when she first passed out.”
Caroline Warmack, Barnes’ daughter, had similar symptoms before her own heart transplant in 2015.
“I thought having to pause at the top of a flight of stairs to catch my breath was my new normal,” Warmack says. “I thought getting nauseous after walking or eating would be a part of life. I didn’t realize how bad it was.”
Barnes and Warmack knew they had heart trouble from a young age: Barnes was diagnosed with heart issues and given a pacemaker at 19, while Warmack was diagnosed with heart issues at 9 and given a pacemaker at 14. They both went into heart failure and received their heart failure care and heart transplants at UNC Health.
“Working with an entire family is not common,” says Patricia Chang, MD, a UNC Health cardiologist and director of UNC’s Heart Failure and Transplantation Program, who was involved with the treatment of Barnes and Warmack and Barnes’ sister before them. “It’s been an incredible journey to care for an extended family.”
Sandra’s Heart Transplant
Barnes went into heart failure when she was 45. A few years earlier, she had seen her sister, Donna, pass away after a heart transplant.
“Donna waited too late for a transplant and was just too sick,” Barnes says.
A few months after Barnes was added to the transplant waiting list, she was admitted to the hospital to be monitored for heart failure. A week later, she learned a donor heart was available.
Warmack, in high school at the time, remembers having a pessimistic view of the surgery.
“My experience was with my aunt going through it, so I had a lot of fear that it wouldn’t work,” Warmack says. “I didn’t understand how hard it was, and I didn’t realize at the time that I might go through the same thing.”
Barnes was realistic about the possible outcomes but remembers being optimistic:
“Before they wheeled me into the operating room, I told my children, ‘God knows you need me.’ And I do believe that’s why I’m still here,” Barnes says. “I needed to be here for Caroline as her support when she went through the same thing.”
Caroline’s Heart Transplant
After college, Warmack began teaching. In her first year on the job, her heart failed.
“When I went to the hospital, they told me that if I was 20 years older, I probably wouldn’t still be alive,” Warmack says. “I didn’t understand how badly I was functioning. I had to wait in the hospital for two months for a heart to become available because of how sick I was.”
Still, knowing what to expect from the procedure and the recovery was beneficial.
“I tried to have peace and be optimistic, and it helped that I had seen the process before,” Warmack says. “I probably would have been more nervous if I hadn’t seen my mom go through it.”
It was Barnes’ turn to worry: “It’s a million times worse to watch your child go through it than to go through it yourself,” she says. “If I could have taken it away from her and gone through it again, I would have.”
Barnes focused on being the support system she felt she was meant to be for her daughter.
“I could tell her if certain things or feelings were normal, but I would also remind her not to obsess or worry,” she says. “If you worry about every pain, you’ll never have a life.”
The Gift of a Normal Life
Barnes and Warmack are diligent about caring for their hearts by taking their medications and living healthy lifestyles. One of the major risks after a heart transplant is rejection of the organ, yet Dr. Chang says, “we rarely see rejection in a patient who is taking their meds.”
Although it took both women about a year to recover fully from their respective surgeries, they have used the years since to make the most of their improved health.
“I had a whole new life after,” Barnes says. “It’s been the best 20 years I’ve ever had because I don’t feel sick all the time.”
Since her transplant, Warmack has completed a 10K race and traveled to Hawaii.
“You do get a whole new outlook on life,” she says. “You realize that you don’t get any moments back. It made me appreciate things more, and I don’t take anything for granted.”
Organ Donation Makes It All Possible
Barnes and Warmack both acknowledge the importance of their organ donors in their lives.
“When I was waiting for a heart, it was hard for me to think that someone had to die for me to live,” Warmack says. “I don’t take that lightly. I have so much appreciation for my donor and their family.”
Barnes adds, “Someone is giving you a valuable gift. I was able to talk to the mother of my donor, and her daughter saved many lives. If you can, please be a donor.”
Genetics Help Protect the Next Generation
The family pursued a genetic study and found that an inheritable gene was causing the heart issues.
“My mother passed away when I was 4, and she probably had the gene,” Barnes says. “Fortunately, my son did not have it.”
Warmack didn’t want to pass on the gene, but she wanted a child. After careful planning and coordination with multiple departments at UNC Health, she gave birth to a daughter in January 2023.
“We were able to do in vitro fertilization at UNC Fertility and use my embryos without that gene,” Warmack says. “It was a high-risk pregnancy with lots of appointments, but she’s been checked out and there is no sign of a heart issue, which is a huge relief.”
Dr. Chang and her team worked with Warmack to adjust her medications to minimize the risk to the baby while preserving Warmack’s heart function.
“There was no way 20 years ago to safely protect a baby from this disease,” Dr. Chang says. “It’s a real miracle of medical technology that we can now. It’s been an extra celebration to know that we don’t have to worry about this baby’s heart health.”
Warmack adds, “I know that my experience made me stronger, but I didn’t want my child to have to go through that. It’s such a blessing that science was able to help us to stop passing on this gene.”
Advice for Others Facing Heart Transplant
Barnes’ advice comes from a unique perspective because she received a transplant and had a daughter who received one, too.
“It’s a long haul, whether you’re the patient or the parent,” she says. “You’ll need a way to cope and deal, and for me that was faith in God. Don’t give up.”
Warmack adds, “Try to stay positive and trust your team. See the good in little things and lean on the people around you. I had a good support system, and it made such a difference when I was recovering.”
Dr. Chang praises the way the family remained upbeat and proactive in the face of their diagnoses.
“I know it’s scary for people to hear about heart failure, but this family is an example of why it’s important to not be paralyzed by fear,” Dr. Chang says. “Some people live in denial or become petrified by the possibilities, but Sandra and Caroline have shown that life can go back to relative normal if you see your provider and pursue timely medical care.”
If you’re concerned about your heart health, talk to your doctor. Need a doctor? Find one near you.