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Dona Osterhout/Amyloidosis

Feb 03, 2016

Dona Osterhout was only 48 years old when she noticed that she was having a hard time keeping up when she went hiking and biking with her family.

"At first, I just thought it was just my aging and getting out of shape," recalls the grandmother from Paul, Idaho.

Eventually, she could barely walk and knew it was time to seek medical attention. "I went to see the doctor here in Paul, and he said my heart was in such bad shape I should just get my affairs in order," Osterhout says.

Rather than follow those discouraging doctor's orders, she and her husband Larry came to University of Utah Health's doctors for a second opinion.

The news was somewhat more hopeful: Her heart had been badly damaged from a rare condition called amyloidosis, but a heart transplant would bring her back to health. A donor was found. And in 2006, Osterhout received the heart of a Wyoming woman who had died of a brain aneurysm.

Amyloidosis is a disorder that begins in the blood. Amyloid proteins build up in the bloodstream and create deposits in the body's organs. Amyloid deposits can collect throughout the body but usually affect only one organ. In Osterhout's case, the proteins collected in her heart, enlarging the organ so much it could no longer pump.

After her heart transplant, she was mostly able to go back to her daily life. But two years later, her amyloidosis symptoms started coming back. Returning to University of Utah Health, Osterhout saw Dr. Guido Tricot, a myeloma specialist who recommended a stem cell transplant. Having to endure the invasive procedure as a transplant patient made it somewhat risky, but "of course when it's your best chance at a good life, you grasp at everything," she said.

The procedure was a success, but recovery was difficult. "Everything that could go wrong, did," she says. "I was in the hospital for five and a half months." One of the complications affected her kidneys, and she spent four years on dialysis.

"By 2013, Dr. Tricot said that the amyloidosis probably wouldn't come back, so I got on the list for a kidney transplant," Osterhout says. This time, the organ came from a living donor--the daughter of a patient on the transplant list.

In spite of the long journey from Idaho and some difficult memories, Osterhout is very grateful to U of U Health and its staff.

"It's been quite a ride," she says. Osterhout and her husband, who raised five children and now have 22 grandchildren, will celebrate their 50th anniversary in 2016. "I hope now I can stay away from hospitals for a while."