Kidney recipient whose donor son died unsure what happened at Gulf Coast Medical

[Clark]

http://www.naplesnews.com/news/local-news/kidney-recipients-whose-donor-son-died-unsure-what-happened-at-gulf-coast-medical-center_21818315


Kidney recipient whose donor son died unsure what happened at Gulf Coast Medical Center
Liz Freeman


Frank Donaldson is in the dark about what went wrong when his son donated a kidney to him earlier this month and died.
“I don’t know what happened,” the 69-year-old Cape Coral resident said. “I have his kidney in me and I am recovering from surgery.”
Donaldson received the transplant on April 16 at Gulf Coast Medical Center in Fort Myers, where his son, John James Donaldson, 40, was the living kidney donor.
Hospital officials have not identified the donor because of patient confidentiality, but said the individual suffered from a known rare complication. Gulf Coast Medical, which is part of Lee Memorial Health System, operates the only kidney transplant center in the region.
The death prompted Gulf Coast’s transplant team to voluntarily suspend its living kidney donor transplant program April 21 to review procedures with the United Network for Organ Sharing, which operates the nation’s transplant system for the federal government.
Donaldson said he and his family are grieving.
“I will deal with my son’s issues when I heal myself,” Donaldson said. “His kidney is working in me.”
The U.S. Department of Health and Human Services, which contracts with UNOS, has been informed of the donor’s death in Fort Myers, according to an HHS spokesperson.


Four scheduled living donor kidney transplants were canceled at Gulf Coast and another 21 patients and their living donors face tough decisions — transferring to another transplant center or staying with Gulf Coast in hopes the program is reinstated in a reasonable time frame. The 21 patients and their donors can continue their medical evaluations for organ matches.
The hospital is meeting with patients and their donors to discuss their options. One Cape Coral patient, Jimmy Serrago, 21, whose scheduled transplant for April 23 was canceled, said he was told the program could be reinstated in July.
“I don’t think that is an unreasonable expectation,” Lee Memorial spokeswoman Mary Briggs said. “But we don’t have a timeline yet.”
Serrago, who has been on dialysis for more than two years after kidney failure due to lupus, said the program suspension impacts a lot of lives.
He tried to have his transplant last year near Christmas but got too sick. He then was scheduled for May 28 and moved up to April, and now the program is suspended.
“I’m still pretty much in shock,” Serrago said. “I put all my eggs in one basket.”
He may try to transfer to Cleveland Clinic Florida in Weston. His living donor, a friend who wants to remain anonymous, is still committed despite the recent donor death.
“That night we found out, we called her and her husband and asked, ‘Do you want to stick around?’ She said, ‘Of course,’” he said.
Briggs said Gulf Coast is working with other centers in Miami and Tampa to help patients transferring to those programs. Officials at Cleveland Clinic Florida, Tampa General Hospital and Jackson Memorial Hospital in Miami were unavailable for comment Tuesday.


The National Kidney Foundation reports there were 25 living kidney donor deaths in the United States from 1994 through 2009 within 90 days of the transplant. During that period, there were 80,347 kidney transplants for a surgical death rate of about three deaths per 10,000 donor surgeries.
“To put it in perspective, the surgical mortality rate for non-perforated (non-ruptured) appendicitis is estimated at eight per 10,000 cases of diagnosed appendicitis,” said Dr. Leslie Spry, on behalf of the national kidney foundation. “Surgical mortality for living kidney donors was found to be slightly higher in men than in women, and slightly higher in blacks than in whites or Hispanics. That said, the number of deaths was still very low.”
Complications for living donors can include infection, problems with the anesthesia, blood loss, blood clot, injury to other organs or surrounding tissue, according to UNOS.
According to HHS, there have been 16 living kidney donor deaths within 30 days of the organ donation from 1999 to this past January. Twelve of the deaths were medical in nature.
Christine Wright, an Ohio resident who donated a kidney when she was 37 in 2008 to her older sister, started the website www.livingdonor101.com six years ago to help educate living donors after feeling abandoned by her transplant center.
Living donors are often relatives of the person in kidney failure and they commit emotionally, and transplant centers don’t inform thoroughly of risks, she said.
“There is a lot of pressure to donate,” Wright said.
A 2011 study done at the University of Minnesota with 262 living kidney donors two months to 40 months post donation, found that 40 percent had felt pressure to donate, according to the study. Ninety percent understood the effects of living donation on recipient outcomes but only 69 percent understood the psychological risks of donating and 52 percent understood the long-term medical risks of donating.
Wright said the donor death at Gulf Coast could have a ripple effect where some living kidney donors may change their minds.
“I think there can be,” she said. “I don’t know how many because nobody has studied it.”
There were no standards of care for living kidney donors for the industry until UNOS in 2007 began developing standards and they were adopted by HHS in 2013, she said.
Joel Newman, a spokesman with UNOS, said the organization did not have authority to develop standards of care policies for living donors until 2006. The last two years has seen more stringent guidelines for living donors, he said.
Briggs, Lee Memorial spokeswoman, said Gulf Coast fully complies with all the policies of the Organ Procurement and Transplantation Network and UNOS, in addition to the standards set by the federal government.
“All donor candidates undergo a comprehensive medical and psychological evaluation to determine if they are suitable for organ donation, and the possible risks and complications of the surgery are thoroughly explained,” she said in a statement. “An independent living donor advocate is assigned to each donor to assure his or her best interests are represented throughout the process.”