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Lawrence man with amyloidosis becomes oldest Saint Luke's heart transplant recipient

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KANSAS CITY, Mo. — As part of American Heart Month, 41 Action News is sharing the story of a 75-year-old man's journey to becoming the oldest patient to receive a heart transplant at Saint Luke's Hospital.

After suffering from high blood pressure for nearly 20 years, John Edgar Tidwell, a professor at the University of Kansas, discovered he had a genetic condition called amyloidosis.

Dr. Andrew Kao, medical director of heart transplantation at Saint Luke's, said the condition causes the heart to thicken and stiffen, which can ultimately lead to heart failure.

"We used to call this the stone heart because literally the heart turns to stone," Kao said.

After seeing his local doctor in Lawrence, Tidwell was sent to see Kao at Saint Luke's. Despite being on medication for the disease, his condition rapidly deteriorated and his kidneys began to fail.

"Professor Tidwell was really good about taking care of himself, eating properly, exercising, doing everything he was asked to do, but he can't fight against nature because this is something that genetically he's programmed to have," Kao said.

After much consideration, Tidwell agreed to go on the heart transplant list. Doctors knew there was going to be a risk doing a transplant with his age and condition.

"He was quite compromised, he was already going into surgery, if we accepted him, with compromised kidneys and we know the surgery by itself can cause further damage," Kao said. "It was really a very desperate situation."

Tidwell received his new heart the night of Thanksgiving 2020. He has since been able to see photos of the effect the condition had on his heart.

"When I first saw the actual heart itself, it almost blew me away," Tidwell said.

While some things are still difficult for him to do, Tidwell is building his strength back up and on the road to recovery with the help and support of his family.

"The fact that I'm healing up extremely well indicates that things have improved immeasurably," Tidwell said.

As he adjusts to life with his new heart, he can't help but think about the family who donated it in their time of grief.

"That's part of the reason I want to do a good job of taking care of myself even more so because in doing that I think I honor the donation that was provided for me," Tidwell said.

Kao said amyloidosis disproportionately affects African-Americans. In recent years, genetic testing has made finding it early much easier. Although there is no cure, it is most treatable when caught early.

Kao said anyone who suffers from unexplained heart failure should consider seeing a specialist about the condition.