Organ transplant recipients balance guilt and gratitude: ‘These were supposed to be her breaths’

Alin Gragossian’s heart was pounding as she ripped open the envelope, as if it knew the letter inside would reveal the story of its original owner — the story of the woman whose organ now beat in Gragossian’s chest.

Gragossian, a third-year emergency medicine resident at Drexel University, received a heart transplant in January, less than a month after she went to the emergency room for a nagging cough and sudden shortness of breath. Her heart rate plummeted into the teens that night.

That’s how doctors discovered she had familial dilated cardiomyopathy — a genetic form of heart disease in which the heart muscle becomes thin, causing one or more chambers to enlarge, making it difficult to pump blood.

To survive, doctors told her, she’d need a new heart.

According to the United Network for Organ Sharing (UNOS), about 18 patients die every day waiting for an organ transplant.

But Gragossian’s condition was particularly critical, so after only a few weeks, she got the call that a heart was available. She went home from the hospital just days before her 31st birthday.

Now four months later, she was reading a letter from the organ donor’s family.

“I always knew I had an organ donor that saved my life, but this gave her a face and history,” Gragossian said.

The letter spoke of a young girl who was in school. She was passionate and had big goals.

Reading it left Gragossian conflicted.

“I am so lucky to be freely breathing this fresh air,” she wrote on a blog started to share her transplant experience. “I am feeling so guilty, though. These were supposed to be her breaths.”

The raw honesty of Gragossian’s blog has resonated, drawing more than 1,200 readers per month. It provides a rare window into the emotionally complex journey that follows an organ transplant from a deceased donor. Behind the heralded stories of transplant recipients running marathons with their new hearts or living to see their grandchildren, the reality of a life gifted by someone’s death can be more complicated. And knowing many others waiting for an organ won’t be so lucky can lead to conflicting feelings of guilt and gratitude.

Today, the number of organ transplants performed in the United States is at an all-time high (more than 36,500), creating a pressing need to provide mental health support for recipients, experts say.

“Mental and emotional care is critical,” said Sallie Smith, a social worker at the Hospital of the University of Pennsylvania, where she works with heart transplant patients, including Gragossian.

Immediately after a transplant, patients are focused on being alive, Smith said. “When they get home is when they start to realize the true impact of having an implant, and what it means for their future.”

Smith has been working with HUP patients for 11 years. She evaluates their mental health before the transplant, asking about previous mental illness and if they have family and friends to support them after the surgery. She also prepares them for the worst-case scenario, helping them create a living will.

After patients come out of surgery, Smith checks on them three to four times a week while they recover in the hospital. She tries to help reframe the guilt some feel.

“I tell them that everything was done to try to save that person’s life,” Smith said. “The beautiful thing that comes out of their death is, multiple people can live.”

One donor can save up to eight lives, according to the American Transplant Foundation.

Something that helps most patients with the emotional healing process is writing to the donor family, said Debbie Gordon, a HUP social worker who works with transplant recipients after they leave the hospital.

Some patients are afraid to stir up the family’s grief, but “most donor families love getting that contact to know the donation made a huge difference in someone’s life,” Gordon said.

Writing to her donor’s family brought Gragossian peace of mind, as does spreading awareness about the importance of organ donation. A note she tweeted thanking her donor got more than 55,000 likes. It reads, in part: “I’ll put this <3 to good use, babe. Thank you from the bottom of... our heart.”

But some patients have more difficulty adjusting, Smith said. They might wonder if they’re deserving of this organ or worry about rejection, in which their immune system attacks the new organ, possibly putting them back on the list for another transplant.

Those who had mental illness before the surgery are at higher risk of developing depression or anxiety.

“That’s when it’s critical for us to be pulled in quickly so they don’t stop taking [anti-rejection] medications,” Smith said. “Mental health can impact the medical recovery.”

By the time Mike Mullner was 44, he’d had two heart attacks. He was an active man, but heart disease was in his genes.

After the second heart attack, he seemed to be doing well, said his daughter Caitlyn Mullner, now a 26-year-old emergency room nurse at Hahnemann University Hospital. (She and Gragossian became friends while working there.)

He was at the 2007 Super Bowl in Miami when his defibrillator — a pager-size device implanted in the chest to maintain normal heart rhythms — went off. His heart was beating abnormally.

“A week and half later he found out he needed a heart transplant,” Caitlyn said.

Sudden news can take a greater emotional toll, Smith said. Although many patients in long-term heart failure develop depression because they can’t lead the life they used to — running about or even climbing stairs — those who deal with it for years at least have time to consider the idea of a transplant.

Others, like Mullner, “haven’t had time to even process that they’re sick, let alone that they need to stay in a hospital and get a new heart,” Smith said.

Still, Caitlyn said, her dad was optimistic. “I remember him telling my little brother, ‘Just wait. In a few months I’ll be running circles around you on the basketball court,’” she said. “That never ended up happening.”

After the transplant, her father experienced symptoms of post traumatic stress disorder from the sudden nature of the transplant. He never returned to work and soon began questioning why he should be alive when his donor died, Caitlyn said.

“My mom would rush home from work everyday to try to beat me and my brother home from school,” Caitlyn said, “because she wasn’t sure if she was going to find my dad dead or alive.”

When her father eventually sought treatment, he became dependent on medications, Caitlyn said, going through a month’s prescription of anti-anxiety pills in a week.

After years of intermittent hospitalizations for mild rejection, Mullner’s transplanted heart is now failing. The 55-year-old was sent home on hospice care in November.

Caitlyn can’t help but wonder if getting more mental health care earlier might have made him more resilient physically and emotionally.

“Post-transplant, everything is so focused on physical health,” she said. “How’s the heart doing? Is there rejection? And that’s important, but mental health gets brushed under the rug.”

Most hospitals do not require any mental health care for transplant recipients once they are discharged. But Gordon, at HUP, said she tells patients to reach out any time, and many have taken her up on it.

Mullner wishes he had sought care sooner. His message to other transplant recipients: “Don’t be scared to ask for help.”

As someone who previously worked in the mental health care field, Gragossian actively sought therapy before and after her transplant.

It’s helped her adjust to many changes — like having to take medications and measure her vital signs four times a day. And avoiding crowds due to her heightened risk of catching a cold or other infection.

Transplant recipients take immunosuppressive drugs to ensure their bodies don’t reject the new organ, but this also makes them more vulnerable to other diseases. At a recent trip to the Mütter Museum, Gragossian heard someone down the hall sneeze. “I ran out of there,” she said.

She carries hand sanitizer with her everywhere and asks people to use it before shaking hands with her.

When she returns to work in the hospital this summer, Gragossian will wear a gown and mask at all times.

It’s a small price to pay, she said, to do what she promised her donor: put their heart to good use.