Trading Days for Years

For more than 25 years, doctors had been unable to lower Robert Johnson’s high blood pressure or alleviate his heart problems.

Robert experienced a range of symptoms, from shortness of breath and chronic coughing to neuropathy and kidney problems. 

His primary care physician couldn’t get to the root of the problem, and in 2015, Robert, then in his mid-60s, was referred to Saint Luke’s Mid America Heart Institute. Robert met with Bethany Austin, MD, a cardiologist and co-medical director of Saint Luke’s
heart failure program.

Dr. Austin ordered tests that showed the wall of Robert's heart was thickening. That’s not uncommon in patients with long-term high blood pressure, but the two conditions are not necessarily related. 

Dr. Austin suspected other factors could be at play because Robert’s symptoms were not entirely consistent with more typical forms of heart failure. 

She ordered a heart biopsy, which delivered a definitive diagnosis in early 2016: Robert had amyloidosis, a disease that causes proteins to build up in organs, including the heart. The buildup interferes with blood flow, which leads to heart failure and can be fatal. 

There are several types of amyloidosis; Robert’s was hereditary, caused by a genetic mutation. Outside factors can also cause the condition. Although the disease is relatively rare, with only 5,000 to 7,000 U.S. cases annually, Dr. Austin said it’s likely more common than previously thought since it is often overlooked.

At the time of Robert’s diagnosis, few treatments existed for amyloidosis. However, he did qualify for clinical trials that gave him access to medications in development. For a few years, he seemed to be doing better. 

During that period, the possibility of a heart transplant had come up, but it was a trade-off: such surgery came with significant risks, and it might not fix his other problems. 

And, overall, his quality of life and test results didn’t seem to indicate a major intervention. When he undertook a treadmill test to measure oxygen capacity, for example, the results were good. 

“That threw us off a bit,” Dr. Austin said. “He was a tough one to figure out.”

Then, in early 2019, Robert’s condition began deteriorating rapidly. Even with increased diuretics, he experienced fluid buildup and his kidneys were struggling. 

“I was very sick,” he said. “I just wanted to see my granddaughter get through grade school. I wasn’t sure if I’d be able to.” 

Over the summer he went to the hospital twice, the second time over Labor Day weekend. A test to measure the volume of blood his heart was pumping delivered very concerning results. 

“The output from the heart was really low—I mean, really low—to the point that he didn’t go home. He stayed in the hospital,” Dr. Austin said. 

Robert was now 68 years old, at the upper limit of qualifying for a heart transplant, but he was in relatively good health otherwise. With his type of amyloidosis, doctors believed the disease would not recur in a new heart and restoring his blood flow would ease his kidney problems. In short, transplant was his best option, and he went on the transplant list.

Saint Luke’s has one of the shortest waitlist times in the country, and a donor heart became available within a few weeks. By that time, Robert’s own heart was barely viable, with doctors estimating it might only last another week to 10 days. He underwent surgery to become heart transplant number 841 at Saint Luke’s, which has performed more than 1,000 transplants since beginning the program nearly 40 years ago.

Surgery brought remarkable improvements to his life. Pre-transplant, he’d only get through two or three strips of cutting his grass before he’d need a break. Now he has enough energy to do the whole yard. He’s also back to enjoying golf. 

“I tell people the fender has some dents, but the engine is great,” he said. “I don’t feel like there’s anything I can’t do in moderation.”

He stays actively involved at Saint Luke’s, too. During his own wait for a heart, a previous transplant recipient visited him, offering support and encouragement. That meant a lot. 

“I made up my mind that I needed to give back,” he said. 

As a photographer, he took a picture of the heart sculpture that sits in the Heart Institute waiting room, and used it to design a card for other recipients. 

“The treatment I got was outstanding,” Robert said. “I call Dr. Austin my angel, and I will be forever indebted to the doctors, nurses, and staff at Saint Luke’s. They saved my life.”