The transplant was successful, but the patient died of shame

kidneys

Kidney transplantation was pioneered in Boston, at the Peter Bent Brigham Hospital. The first transplants were performed only on identical twins because immunosuppression treatment had not yet been discovered. The donor and the recipient had to be literally identical in order for the transplant to have any chance of success. For the early recipients, it was a case of bad luck and good luck. Bad luck that to have a fatal kidney disease. Good luck that you had an identical twin able to give you a spare.

For the Marsden brothers, it was a case of bad luck, good luck, bad luck. Leon had the bad luck to have a fatal case of glomerulonephritis. He had the good luck to have an identical twin, Leonard, who was eager to donate a kidney. But, more bad luck, because Leonard, at the age of 19, did not meet the legal age of majority in Massachusetts, and, Leon was not expected to survive until they turned 21.

Because Leonard was not old enough to give legal consent, and because he desperately wanted to donate his kidney to his brother, his parents petitioned the courts for help. In Marsden v. Harrison, the court sided with Leonard in his desire to donate. The transplant was successful and both brothers did well. The case highlights the stringent standards that were used in the 1950’s to be sure that donors were not being pressured into giving kidneys against their own desires.

By the time I started my medical training in the 1980’s the pendulum had swung in the other direction. Kidney transplantation was relatively routine and the dangers were smaller. Family members often came under intense emotional pressure to donate even when they were, in truth, quite reluctant.

Chris* was a 17 year old with blond, curly hair, admitted for a kidney transplant early in my internship year. He had a long history of a degenerative kidney disease and had been undergoing thrice weekly dialysis for years. Despite the dialysis, his health continued to deteriorate. His parents vied with each other to donate one of their kidneys, but neither was a match.

His only sibling, his brother Steve* was in his early twenties and just starting out in a demanding career. He had an excellent relationship with his brother and his parents, but he was very reluctant to donate. He was so reluctant, in fact, that the transplant surgeon suggested that they put Chris on the waiting list for an unrelated donor kidney in the hope that Chris could get a kidney without involving Steve.

In the following two years, Chris continued to deteriorate until he was facing death, and still no matching kidney had become available. At that point, everyone began looking to Steve. Steve was still reluctant. Steve was frankly scared about the risks. Kidney donation carries a small, but real risk of death. In addition, no one could honestly tell Steve that he might not come to need, and regret the loss of, his second kidney. Steve balked.

Steve endured unrelenting pressure from his parents. As Chris became increasingly ill, his parents became increasingly desperate. They simply could not understand how Steve could hesitate at giving his brother what was his only chance to live any life, let alone a life free of dialysis.

Faced with his frantic parents, and frightened by Chris’ precipitous decline, Steve relented and agreed to donate. Both Chris and Steve sailed through their surgical procedures. To the great joy of everyone, Steve’s kidney in Chris’ body began to work immediately. For the first time in years, Chris could make urine. A mundane physical process, peeing, became a source of joy for Chris, Steve and their parents. The first few days after the transplant were days of happiness and celebration.

Then, inexplicably, Chris became suddenly and seriously ill. The kidney did not appear to be infected. It was still working well, but Chris developed high fevers, chills and lapsed into delirium.The family’s joy turned to fear, and the fear was compounded by the inability of the doctors to figure out the cause of Chris’ life threatening illness.

Chris slipped into a coma around the time that tests of spinal fluid revealed the cause, cytomegalovirus (CMV) encephalitis. Chris had developed a brain infection caused by a virus that infects those who are severely immunocompromised. Chris certainly fit that description; he was taking massive doses of immunosuppressive medication. CMV had spread throughout Chris’ body and attacked his brain. The chances of recovery were extremely slim.

How had Chris acquired CMV? CMV is transmitted from person to person through close contact with bodily fluids. Special immunologic tests indicated that Chris had acquired CMV only recently. It had almost certainly been transmitted with Steve’s kidney.

How had Steve gotten CMV? The first thought was that Steve, like many people, had had a mild infection of CMV in the past, and the virus had remained dormant in his bloodstream. However, blood tests on Steve revealed a completely unexpected finding. Steve, too, was immunocompromised. That’s because Steve was HIV+.

It was then that the truth came out. Steve was gay. That had been the source of his reluctance to donate. This was at the very beginning of the AIDS epidemic. Most people had not yet heard of AIDS, but Steve, like many members of the gay community, was aware that a new disease was striking down young, gay men. He did not know exactly how AIDS was transmitted, but he did know that he was at risk. But Steve was ashamed that he was gay and he strove to conceal his sexuality from everyone, particularly his parents.

Nowadays the requirements for informed consent have become almost as stringent as they were in the 1950’s. In an effort to prevent tragedies like those of Chris and Steve, potential organ donors are cared for and counseled by doctors who have no role in the care of the recipient. Most importantly, potential donors can choose to opt out for any reason or no reason, and the family will simply be told that the potential donor is not a match. In that way, we can ensure that donors are giving organs of their own free will, and not because of intense emotional pressure from family members or the recipient.

Of course that came much too late for Chris, Steve and their parents. Chris was promptly started on anti-viral therapy that brought the CMV infection under control, but he had already suffered massive brain damage. He lingered on for several months and died, his new kidney still working fine. Technically, he died of CMV encephalitis, but in reality, he died of shame, Steve’s shame. Steve had been so ashamed of his sexual orientation that he felt compelled to conceal it, even from the doctors who cared for him and Chris.

Steve developed full blown AIDS two years later. In the days before protease inhibitors, there was little treatment for AIDS, and inevitably, Steve died after struggling with the disease for several years. Two elderly parents, who for a few brief days in the aftermath of the transplant dared to believe that both sons would live to old age, lost everything.

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