It was the night before her son’s fourth birthday, and Brandy Sweeney knew something was wrong.
Eight months pregnant with her third baby, and first girl, Brandy couldn’t sleep – just the latest symptom she was experiencing in a difficult pregnancy.
Her first two pregnancies went smoothly and ended with her giving birth to healthy baby boys.
This one had been different. As excited as she was to be having a baby girl, problems had plagued her through her pregnancy.
“I always loved being pregnant,” Brandy says. “I always felt good. People were so nice to you and complimentary. With my daughter, it did feel different from the beginning. I thought, well, maybe it’s because it’s a girl.
“They always say girls suck the beauty out of you. I thought maybe that’s what it was.”
It wasn’t. What began as normal pregnancy symptoms became worse. Normally a healthy person – “Tylenol was the most medicine I would even take” – Brandy began dealing with a “terrible” cough and sleepless nights.
The night before her son’s birthday, as she lay awake again, Brandy began to cry. Something serious was happening. She hoped it might be something simple.
It was peripartum cardiomyopathy (PPCM), a rare and potentially life-threatening heart condition usually diagnosed late in pregnancy or soon after delivery.
“It was a scary moment because here I was, not having a clue,” Brandy says. “I’m thinking, ‘I’m about to have a baby, and you’re telling me that I have a heart problem and I could die?’”
Because of the heart problem, Brandy was required to deliver her baby girl early, at 35 weeks. But that was only the beginning of the process. She eventually had a heart-assist device installed before getting a life-saving transplant.
Today Brandy lives in Point Pleasant, W.Va., with her husband, three healthy children, and a healthy heart. She doesn’t forget the struggle it took to get there and how lucky she is to have all of it.
“I figure if I could go through all of that in five months, heck, I could probably do anything,” Brandy says.
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‘I Just Started Bawling’
Before finding out about her heart problems, Brandy was living a normal life in Point Pleasant, W.Va., with husband Brandon and their two young sons.
A frequent volunteer in the community, Brandy – 38 years old at the time – was deep into the third trimester of her pregnancy.
“I was finally pregnant with my first daughter, which I was so pumped about,” she says. “You know, everybody wants a daughter to put the bows in and all that good stuff. We were just that typical family waiting on that girl. Then we still were very involved in our community, in our church, and everything.”
This pregnancy was giving Brandy more trouble than the first two. She was experiencing significant swelling and a bad cough, and she was having trouble sleeping.
Brandy chalked these symptoms up to a difficult pregnancy. She thought she was experiencing different symptoms because it was her first girl.
That’s common for PPCM, which affects between 1,000 and 1,300 women in the United States each year. The symptoms often mirror the symptoms of a normal pregnancy, leading to a challenging diagnosis.
“A lot of physicians tend to miss these signs because they overlap significantly with what a normal pregnancy is,” says Ravi Ramani, MD, a cardiologist for UPMC’s Heart and Vascular Institute and director of the UPMC Integrated Heart Failure Program.
But the night before her son’s birthday, another sleepless night, Brandy knew something was very wrong. She and Brandon went to their local hospital and received the diagnosis of PPCM.
“I looked at my husband, and I just started bawling,” Brandy says. “I’m like, ‘What the heck? I am just pregnant; I’m not in congestive heart failure and dying.’”
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‘I Felt Like My Life Was out of Control’
PPCM is a disease with widely varied outcomes depending on the symptoms. And when it is diagnosed during pregnancy, treatment can be difficult because some of the typical heart medicines can affect the unborn baby, Dr. Ramani says.
In its most severe cases, PPCM can be life-threatening.
“It’s impossible to tell who’s going to get better and who’s going to get worse or who’s going to stay the same,” Dr. Ramani says.
Brandy ended up delivering a healthy 5-pound baby girl, Braylon, at her local hospital in West Virginia. But it was clear her heart problems wouldn’t go away after birth.
“I was holding her for a few minutes, and then all of a sudden I started shaking,” Brandy says. “I said, ‘Honey, you need to take her. I’m about to drop her.’ And then they took her, and then took me to ICU.”
Knowing she needed more specialized heart care, Brandy came with Brandon to UPMC’s Heart and Vascular Institute.
“Brandy, obviously, she was very scared, and that’s the right attitude to be because she’s basically healthy and she’s never had a serious problem like this before,” says Dr. Ramani, one of Brandy’s doctors. “She’s young, she’s taken care of herself – this is pretty traumatic if you think about it.”
When medicine didn’t improve Brandy’s heart failure enough, doctors took the next step with a left ventricular assist device (LVAD). The LVAD can help a person’s heart pump blood in a weakened state.
Sometimes used as bridges to transplant and sometimes a more permanent solution, LVADs can be life-saving devices. But they also present complications to people living with them. They’re connected to your body, making it difficult to get around. And they run on batteries, which require charging so the machine can continue to do her job.
After getting the LVAD installed in September 2014, Brandy returned home to West Virginia. And although she knew the device that was helping keep her alive was necessary, it was a struggle at times. She felt “plugged in” to the wall with the device — unable to fit in certain places, unable to perform certain tasks.
“I’m not going to lie, there were some days when I had the LVAD I would just break down and cry,” she says. “I felt like my life was just out of control. I couldn’t just go take a shower like a normal person.”
After a couple of months on the LVAD, Brandy had a follow-up appointment at UPMC. It became clear that the LVAD also wasn’t helping her condition enough. She would need a transplant.
‘She’s a Fighter’
Brandy was on the transplant list for just over a month when she received a call about a potential heart, but the procedure never got off the ground. Because of an ice storm, the helicopter scheduled to take Brandy to Pittsburgh couldn’t take off. And after Brandon drove the icy roads to Pittsburgh, the heart didn’t come through.
That experience proved to be the perfect “dry run,” Brandy says. Soon after that day, she got another call from Pittsburgh: A heart was available.
Although ready for a new heart, Brandy felt some fear about the procedure. But she thought of her children and her faith, and she believed it was the right time. She said a difficult goodbye to her children at daycare, boarded the helicopter in West Virginia – the weather cooperated this time – and landed smoothly.
She went in for her surgery late at night. Brandy’s faith had carried her for much of her ordeal, and she said one more prayer before going under from her anesthesia.
“I prayed and prayed and prayed for God to make me get through this,” she says. “And then I prayed for the family of my donor because my family was crying happy tears, and I know that they were crying because they lost a loved one.”
The procedure lasted eight hours. It didn’t take nearly as long for Brandy to know it worked. She felt the evidence as soon as she woke up.
“My heart felt like it was pumping out of my chest,” she says. “I was very aware of this new, very strong, heartbeat. I had not experienced a heartbeat like that. It’s so amazing.”
What happened next confirmed that belief. Although she felt some normal pain from the procedure, she experienced no rejection of the new heart.
She went through physical therapy – in fact, she finished the process ahead of schedule.
“She is a fighter, and that was very clear,” Dr. Ramani says. “It wasn’t as much for herself, but she wanted to be around for her family and her kids, very strongly so. She went through hell: two open-heart surgeries in a short period of time, recovering from all of that, sticking with the program, coming to the appointments. She was in many ways the ideal patient: She did everything we asked and more.”
After Brandy returned home, her family became an unofficial physical therapy: “Trust me, no one let me just sit around,” she says.
Not that she wanted to anyway.
“Honestly, just the looks on my children’s faces, and seeing their faces all the time, that right there was motivation,” she says. “That’s what also prepared me because I knew I couldn’t just sit around. Once this was all said and done, I had to continue fighting.”
‘With Every Beat of My Heart’
In many ways, Brandy has returned to her normal life in West Virginia. She volunteers extensively in the community. Her children – Braydon (9), Bryson (7), and Braylon (5) – are involved in various sports and activities, and Brandy acts as both coach and chauffer.
But she does it all with an awareness of what’s inside her chest. She never knew her donor, but she found out about him through research and communicates sometimes with his sister.
“Basically, with every beat of my heart, I mean, there’s that constant reminder that you’re here because of him,” Brandy says. “I can honestly say every milestone my kids hit, I totally think of him. From some of the research I have done, I’ve seen that he played baseball. So every time my son hits a home run, I’m thinking, ‘Oh, my goodness, part of him is letting me see this, and it’s something that he would have enjoyed as well.
“Then sometimes when I’m having a bad day, or say I’m grouchy with the kids, it does make me stop and think, ‘You know what? There’s worse things.’ And I’m lucky that I get to be that grouch.”
She also has become an advocate for organ donation. She speaks on the topic frequently in her community, and she even added it to her usual community service. Brandy began a holiday program called The Light of Christmas after her transplant. The celebration includes the planting of trees in Point Pleasant.
Brandy makes it a point every year to plant a tree for organ donation.
“Be someone’s hero,” she says, “because without my hero, I wouldn’t be here today.”
The UPMC Heart and Vascular Institute has long been a leader in cardiovascular care, with a rich history in clinical research and innovation. As one of the first heart transplant centers in the country and as the developer of one of the first heart-assist devices, UPMC has contributed to advancing the field of cardiovascular medicine.