A Chicago woman who donated one of her kidneys to her brother says she received enormous satisfaction from the transplant process but was later blind-sided when she was sent to collections over bills she was told were covered by the transplant program.
The case highlights the problems facing living organ donors and the groups trying to bolster their rights.
Lani Gilardon said her decision back in 2005 was a no-brainer. Her brother, Josh, became critically ill, was at risk of kidney failure and needed a donated kidney.
"It was really serious. They had a code blue called on him on St. Patrick's Day and he went into cardiac arrest," Gilardon said. "I was ready the minute they said he had kidney failure. I told him when he was in a coma. I was rubbing his hand and I told him, 'If you need one, I'll give it you.'"
The surgery at Northwestern Memorial was called a success, Gilardon said, and a year later her brother was doing well.
But around that time, she started to have pain. At first, she said she thought it was part of the healing process, but eventually it became clear she had a problem. A tumor the size of a softball had developed on the incision from the transplant surgery.
"The doctor literally took one look. He didn't even touch it and he was like, I don't like the way it looks," she recalled.
Doctors eventually removed the benign tumor, and Gilardon says she was told by the hospital the procedure would be covered by Northwestern's kidney donation program, which is the largest of its kind in the country.
"At first I get this bill and I'm happy. I'm like, 'Oh my God, they're going to take care of it.' And maybe about a week later I get another one and it's not being taken care of. And then I get more and more and more, and they just don't stop," Gilardon said.
Without insurance, Gilardon said there's no way should pay the $14,000 hospital bill. Northwestern Memorial eventually sent her to a collection agency.
"There is definitely a need for protection for for those people, one to ensure that their expenses are covered, so they can afford to be a living donor, and then their follow-up and follow-up care," said Diane Hollingsworth, the Director of Medical Education for the Chicago-based National Kidney Foundation.
Legislation pending in Congress would address that. One particular bill would ensure job leave time. Another would give donors a tax credit for the donation.
"There is just so many people waiting for a transplant," Hollingsworth said. "Living donors are such a viable option. I want to make sure they feel comfortable after their living donation, that they are protected."
Northwestern eventually investigated Gilardon's case and corrected an administrative error that caused her to receive the bills.
Complications following organ donation are rare, a Northwestern spokesman said, but when they do occur, donors are not held financially responsible.