The Challenge: A Difficult Pregnancy
In 2014, Brandy Sweeney of Point Pleasant, West Virginia, was loving her life as a 37-year-old mother to two young boys. But she dreamed of one day adding a little girl to complete her family.
“I was thrilled when we found out we were having a girl. I couldn’t wait for my boys to have a little sister. And all the fun things we would be able to do as mother and daughter,” Brandy exclaims.
But, from early in the pregnancy, Brandy could sense this was going to be a very different experience.
“I kept saying that this third pregnancy was so different. I genuinely enjoyed being pregnant and felt great for the most part with my previous two. But something felt different about this one,” she says.
Brandy tried to calm her nerves — chalking it up to being pregnant with a girl, something she hadn't yet experienced. But something still seemed off.
“I had a dry cough that just would not go away. My obstetrician told me it was allergies. I couldn’t sleep at night due to the coughing. I remember sitting on our porch swing crying at night, praying for the cough to cease so I could get some rest.”
In August 2014, about a month before her due date, Brandy and her husband took their family to the county fair. Brandy found the fair to be a struggle.
She says, “I was out of breath the entire time. I had to keep sitting down while we were walking. It was bad.”
Brandy’s symptoms finally culminated on the day of her oldest son’s fourth birthday.
“I woke up that morning completely swollen. I couldn’t even see my ankle bones. I couldn’t breathe,” Brandy states.
The family had a busy day ahead of them, with church and then a birthday party planned. A self-described “DIYer,” Brandy knew something was wrong when she didn’t have the energy to decorate the house for her son’s party.
As soon as the party ended, Brandy and her husband went to the emergency room where doctors admitted her right away.
The Diagnosis: Peripartum Cardiomyopathy
After some initial tests, the 38-year-old 8-months pregnant mother of two learned she had congestive heart failure.
“I was in complete shock. I just started crying immediately,” Brandy says.
Brandy had more tests, including an echocardiogram. The results showed her ejection fraction — the number that tells how well a heart is pumping out blood — was only 15. A normal LV ejection fraction is 55 percent or higher.
Doctors diagnosed Brandy with peripartum cardiomyopathy, an uncommon form of heart failure. It plagues women during their last month of pregnancy or up to five months after birth, according to the American Heart Association.
Doctors at Brandy’s local hospital opted to transfer her to the ob-gyn floor and observe her. Ultimately, they chose to have Brandy deliver her baby girl at 35 weeks.
With her baby girl in the NICU and Brandy in the ICU, it was critical to find her the best heart care. Brandy's local hospital fully recognized that they weren't equipped to handle a complex cardiovascular case such as hers.
The ICU doctor explained that, after monitoring Brandy for a few more days, they would transfer her to UPMC in Pittsburgh.
The Path to UPMC’s Heart Transplant Program
Upon arriving at UPMC Presbyterian, Brandy went to the cath lab right away for testing. Results revealed that her ejection fraction was now an 8, showing further decline in her heart’s function.
From there, she spent one day in the ICU before moving to the cardiology floor. Shortly after, Brandy got a visit from a group of people she never thought she'd meet — the UPMC Heart Transplant Team.
“When they told me they were from the transplant team, I thought they had the wrong room,” Brandy says. “I said to myself, ‘they can’t be here to see me. I can’t need a heart transplant.’ I was such a healthy person up until this all started.”
The transplant team was indeed there to see Brandy, though.
“They said I needed a heart transplant if I wanted to be around to raise my babies,” she says through tears. “I had already missed so much with the kids. My oldest son’s first day of school, his first soccer game, and my daughter coming home from the hospital,” Brandy says.
The Solution: An LVAD and A Heart Transplant
After some testing, the transplant team offered Brandy a solution to get her back to her kids sooner. They could implant a left ventricular assist device (LVAD).
An LVAD is a mechanical device that takes over the work of the damaged heart, giving it a break. Doctors can use it as a bridge to transplantation, sometimes allowing patients to return home while they wait for their donor heart.
Brandy’s team deemed her a candidate for an LVAD and inserted it on September 15, 2014.
“The original date they picked for my LVAD procedure was our 5-year wedding anniversary. Luckily, they pushed it back until after the weekend. We celebrated with an anniversary meal in my hospital room, arranged by some of the people at the hospital. It was a sweet surprise that we appreciated so much,” Brandy explains.
When Robert Kormos, MD, and his team went to perform the procedure, they found scarring over a year old on her heart. This told them that peripartum cardiomyopathy was something Brandy had been battling for far longer than she realized.
“That scarring indicated I had this at some point during pregnancy with my second son or shortly after his birth,” Brandy explains.
Brandy went home shortly after her LVAD implant and began a slightly different version of her previous life with her kids.
“It just became our new normal. My son was a huge help of knowing when to change the batteries on my LVAD. And my daughter got used to me feeding her with that LVAD right next to her,” Brandy laughs.
A few months after her LVAD implant, Brandy went back to UPMC for an evaluation. Her care team told her they would begin the process to get her on the transplant waiting list.
They warned Brandy that the call for a new heart could come at any moment. She'd need to have a plan of action for when that call came.
Brandy experienced one dry run. She made it all the way to Pittsburgh and got intubated. But when she woke up, she learned that doctors had decided not to give her that specific heart.
“At first, I was crushed. However, Dr. Kormos told me that he wanted to make sure I got the perfect heart. That first heart just wasn’t it,” Brandy says.
Brandy gets the call that her perfect heart is ready
A week later though, Brandy’s perfect heart was ready for her.
“When I got the call, I remember being very calm. My husband was with me, and he says I was so calm he wasn’t sure it was real,” Brandy says.
Brandy went to daycare to say goodbye to the kids and then met the helicopter for her ride to Pittsburgh. Since her home is four hours from Pittsburgh, the hospital had a helicopter fly her back to UPMC for her transplant.
“My flight nurse was a woman from my town, which immediately brought comfort to me,” Brandy says.
Brandy recalls the first moments she was awake after her heart transplant.
“As soon as I woke up, I was acutely aware of my new heart. It was so strong. It was an incredible feeling,” Brandy exclaims.
The transplant team came in to check on Brandy and explain the success of the transplant.
“They said my old heart came out very easily. And it took very little to get the new heart pumping again, which is the sign of a successful transplant.”
After nine days, Brandy left the hospital. She then spent five days at Family House.
Family House provides affordable, convenient housing close to hospitals for patients and family members who do not live nearby.
The Results: A Healthy Mother of Three
Recently celebrating her new heart’s three-year anniversary, Brandy and her family are living each day grateful for the gift of organ donation.
“My kids are 7, 5, and 3. They know more about organ donation than a lot of kids their ages,” Brandy says. “They say ‘my mommy is alive because someone gave her their heart.’”
Although she has never met her donor’s family, Brandy is deeply thankful for the selfless act of organ donation.
“I know my donor was younger than me. I prayed for his family as I went into the operating room because I knew they were hurting in an unimaginable way.”
Despite not knowing much about her donor, there is one thing Brandy is sure of.
“I believe this person was truly a good person at their core. Regardless of the decisions they made throughout their life, they had to have been a good person. They made the decision to be an organ donor.”
Brandy enjoys the chance to experience more “firsts” with her kids, taking time to appreciate every little moment with them.
“I was able to walk my second son into his first day of school. I’m back to directing the beauty pageants in our area, volunteering with a local charity, and even substitute teaching,” Brandy says.
Through her second chance at life, Brandy's learned an even deeper appreciation for both the little moments and the big milestones.
“Hearing my kids laughing and yelling in the house. Teaching them to do simple tasks, like how to snap. All of those things just mean the world to me because I’m here and able to experience them,” Brandy says. “My kids were my main motivation throughout my transplant journey. I knew I needed to do whatever I could to be there for them well into the future. They were my reasons for staying strong.”
Brandy is also certain that UPMC was the perfect place for her to be for her heart transplant journey.
“Everyone was so awesome — the nurses, the transplant team, Dr. Kormos. I just love them all!”
Brandy remains grateful for her time at UPMC and looks forward to her trips back to Pittsburgh for follow up appointments.
“My appointments are almost like a vacation to me. I get to go to back and see all of the fantastic people that helped me through this journey,” Brandy says.
Reflecting back on her transplant journey, Brandy offers this.
“When I first heard I needed a heart transplant, everything seemed horrible. However, the pain was temporary. It might have seemed terrible in the moment, but for me the outcome was truly amazing.”
Brandy’s treatment and results may not be representative of all similar cases.
Brandy's photo is courtesy of CORE.