Donna Jones Baker talks about the rare heart disorder that threatened her life

'I had to be a fighter'
Posted at 6:47 PM, Jan 12, 2021
and last updated 2021-01-12 20:51:02-05

For 15 years, Donna Jones Baker was the heart of the Urban League of Southwestern Ohio. The organization's longtime president and CEO retired for health reasons in February 2019. It was a difficult decision.

“I hated it," Jones Baker said. "Because I loved the Urban League, and I loved the community work.”

The extent of her illness wasn’t publicly known. She said she didn’t even know how sick she really was. She was battling a medical condition that was threatening her life, and attacking her heart.

“I had to be a fighter. I had to fight through this and had to really believe that it was going to be okay and that we would get through this,” she said.

The signs that something was wrong came quickly in April 2018. She made a couple trips to urgent care for what seemed like flu symptoms. Then, on April 15, she suffered a heart attack. It was the first sign of a serious problem -- Jones Baker was later diagnosed with a rare disorder called giant cell myocarditis, a condition that few people survive.

“There were physicians who didn’t expect me to live more than six months," Jones Baker said.

The cause of giant cell myocarditis is unknown, and many diagnoses are made post-mortem. Jones Baker did not have a history of heart disease, according to her doctors at the University of Cincinnati Medical Center. But, a history of heart disease isn't necessary.

“It kind of reprograms your immune system to see your heart as the enemy,” said Dr. David Feldman, professor of medicine and pediatrics and director of the clinical services heart, lung and vascular institute at UC Health. “Usually, the time of onset to the time of death is less than a week.”

Doctors did not initially know about Jones Baker's rare heart condition. They only knew her heart was weak and she was dying, Feldman said. Within hours of first seeing Jones Baker, he called in his colleague, Dr. Louis B. Louis, chief of cardiac surgery at UC, because they needed to do something to save her life.

“We didn’t even have a chance to do what would otherwise be the usual steps: get a biopsy and be very relaxed about this and get all kinds of diagnostic studies," said Louis. "It was, 'we better do this or I know what this outcome is going to be, unfortunately.'”

Surgeons implanted a ventricular assist device (VAD) as an emergency procedure.

“We put a pump in that’ll take blood out of her failing left ventricle and pump it back into the rest of her body,” Louis said.

Part of the surgical process includes removing a portion of the heart muscle, which is sent to pathology. When the pathology report came back, that's when everyone learned of the presence of the rare disorder.

“The treatment for giant cell myocarditis is really transplant, because everybody dies,” Louis said.

Patients are also given chemotherapy until they can receive the heart transplant, said Feldman. More medical tests were needed to prepare Jones Baker for her heart transplant, which revealed another major hurdle: a cancerous tumor, found in one of her kidneys.

"And our colleague said you can’t biopsy it," said Feldman. "She’ll die. She’ll die from the surgery.”

It was a lot to process, but Jones Baker said she kept the faith.

“I put my faith in God," she said. "I know that none of what has happened to me is, it’s not in my control. It’s not even in the doctor’s control.”

Nearly every move with her care involved a risk. The treatment for the cancer was to remove the kidney. However, she would not be a candidate for dialysis if needed, because of the presence of the VAD.

"Having dialysis and one of these blood pumps is a disaster," Louis said. "Because patients don’t live long on dialysis.”

Doctors were able to successfully remove her kidney, and she was placed on the list for a dual organ transplant. The surgery was performed in July 2020 during a multi-phased procedure that took nearly 24 hours. She said faith, friends and family got her through it.

“I have to say that my husband has been a rock,” referring to her spouse, Gregory, whom she met when she moved to Cincinnati. “My husband and daughter made the decisions for me. And, I’m glad that they did. I was not able to do that.”

“Donna is a shining example of what we’re trying to do,” said Feldman. He and Louis said they have seen a lot of success with UC's heart transplant program with success rates in the top 10 percent in the world.

“Every step along the way was done with some degree of underlying illness, and getting Donna to full recovery is still an ongoing process. But she’s done really, really well,” said Louis.

Over the last two years, Jones Baker said she was in and out of the hospital multiple times and had to relearn how to walk. But surviving a life-threatening medical condition has left her grateful for an outpouring of care and support.

“I have friends who wanted to make sure that I didn’t need anything,” she said. “People in my life have been incredible. And, people I really didn’t know wrote me letters of encouragement."

She said she received over 1,000 cards, plus flowers and phone calls. In addition to her husband and daughters, she also points to support she had from members of the Cincinnati Chapter of the Links, Delta Sigma Theta Sorority and Advocates for Youth Education.

Jones Baker said she is appreciative to her doctors and the medical teams at UC. And she said the experience made her more aware of how much she values the people around her.

“I’ve been more diligent about letting people know how much they meant or mean to me now, because that outpouring could have been at my funeral. And I would never have known,” she said.

As for working again in the Cincinnati community following her full recovery, it is something she hopes to do.

“As soon as I am well, I will be back in some capacity. I don’t know what it will be,” she said.