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Heart transplant recipients can face serious distress from post-surgery identity issues, study sugge

Tom Blackwell | December 12, 2014 | Last Updated: Dec 14 12:39 PM ET

More from Tom Blackwell | @tomblackwellNP

It was soon after her July 2005 heart transplant that Jean Higgins, under treatment for a complication of the surgery, began to question the new organ beating inside her chest.

“I got a little concerned, I don’t know why, and was wondering ‘What about this [organ donor]? Maybe I don’t even want to accept this heart,’ ” Sister Higgins, a Roman Catholic nun, recalled recently. “It was a very strange feeling.”

In Vancouver, Eunice Barriga learned after her own heart transplant in 2002 the donor had been just 20 years old — and then she saw his face.

“I had a vision of a young man … For 12 years, that’s been with me all the time, every day,” said Ms. Barriga, 65.

AP Photo/The Seattle Times, Steve Ringman AP Photo/The Seattle Times, Steve RingmanThe transplant world typically has viewed the procedure in “Cartesian” terms, as a bio-mechanical exchange of spare parts, one doctor notes. “I can even be alone, and I’m not alone. I feel the presence with me.”

Sister Higgins, based in Kingston, Ont., says she eventually grew to accept the replacement heart as her’s exclusively, while Ms. Barriga says her visions are actually comforting.

But unusual emotional and psychological responses to the life-transforming procedure can produce real distress for some heart transplant recipients, a fascinating new study of a Toronto hospital’s patients suggests.

Video interviews with 25 recipients found many had questions about their identity after receiving another person’s heart, felt an intruder had found its way inside them, or experienced an intense, emotional bond with the donor whose death meant they could continue living.

One 50-something woman even said she stopped wanting to have sex with her husband after concluding — despite anonymity rules — her donor had been a man.

“For a while, I felt as if there was an alien in my body … a foreign identity,” another recipient told researchers from the University Health Network (UHN), according to a just-published paper in the journal Health.

The project itself had unusual origins, stretching the usual, evidence-rooted boundaries of health care and shedding new light on a remarkable treatment the world now largely takes for granted.

Dr. Heather Ross, the cardiologist who heads the UHN’s cardiac transplant program, said her view of the treatment changed when she began exploring philosophy.

The transplant world typically has viewed the procedure in “Cartesian” terms, as a bio-mechanical exchange of spare parts, she notes.

The ideas of phenomenology she examined, however, pointed to body and consciousness being closely linked and suggested “we are in a never-ending process of becoming,” said Dr. Ross, who has been working with British philosopher Margrit Shildrick and others.

‘I had a vision of a young man … For 12 years, that’s been with me all the time, every day. I can even be alone, and I’m not alone. I feel the presence with me’ Over the last five years, their research seems to confirm that perspective, indicating receiving another’s heart is much more than “my engine is failing, I need a jump start,” said Dr. Ross.

“We believe it is a significant issue for some patients. Many people actually had distress. It was very common.”

Further expanding their unconventional approach, the multidisciplinary team behind the studies even engaged artists, including Montreal’s Ingrid Bachman, to produce interpretations — in the form of performance art, videos and sculpture — of the patients’ psychological experiences. The resulting exhibit was called Hybrid Bodies.

The findings, though, are also being applied to care for heart-transplant patients.

The UHN team is trying to better prepare patients beforehand for the emotional and psychological issues they may confront, avoid the “spare-parts” terminology of the past and provide support in the traditional writing of letters to donor families, often a wrenching process.

Some evidence suggests the recipients’ emotional well-being can affect their physical condition, making problems like organ rejection or infection more or less likely.

“If your goal is to have optimum outcomes after transplant, you have to take a holistic approach,” said Dr. Ross. “If I’m trying to get the best quality of life for my patients … and there is more distress than we realized, I need to try to do something to better prepare, better support and be more sensitive.”

To get to the core of their patients’ psyches, the UHN team used less-structured, more qualitative interviews than is usual in psychological testing — and videotaped them.

Being able to watch the recipients’ body language and other physical actions offers a more comprehensive view of their emotional state, the researchers say.

Many of the patients did verbally equate their new hearts to a machine, but their actions suggested differently, with 15 of 25 displaying emotions that included “sobbing and incongruous laughter,” the paper says.

Nine indicated the dead donor somehow lived on within in them. One patient said he felt as if he carried someone else’s “spirit,” another he missed his old heart, since it had been replaced by an “alien thing,” and a third that, given the chance, he would tell the donor’s family “the person that you lost is still living through me.”

A female teacher in her 20s told researchers she felt alien to her friends, who could not be expected to understand “my mood swings and understand the strangeness that is me.”

A 70-year-old retired man said he was convinced he had a better heart because the donor had been a better person; a 38-year-old recipient said if he learned who his donor was “all I’m going to do is see a ghost at my bed.”

Similar research has not been conducted on other types of organ transplant, but Dr. Ross said it is possible receiving a heart is psychologically unique, and not just because — unlike most other internal organs — people can physically feel it.

“In Western culture … we do ascribe so much to the heart,” she said. “You wear your heart on your sleeve. You say, ‘He broke my heart.’ You don’t say, ‘He broke my liver.’ ”

‘You’re borrowing it. It’s mine, but it’s also the person’s that died. It’s like you’re in a little partnership’ Sister Higgins, 71, who needed a transplant because she had a form of cardiomyopathy, or weakness in the heart muscles, said she was able to accept her new organ when she finally said goodbye to the old one.

“I found that I hadn’t grieved,” said the member of the Sisters of Providence of St. Vincent de Paul. “And that was the ticket; you need to grieve that part you’ve let go of. That brought me great relief.”

Another transplant recipient whom she met while at the Ottawa Heart Institute had more trouble, going “kind of crazy” after she gave her new heart a name — then grew angry with “George.”

Ms. Barriga, who required a replacement because her heart was enlarged, said she would heartily endorse the UHN team’s decision to counsel patients in advance about psychological issues.

Like Sister Higgins, she said she is deeply grateful for the transplant and empathizes with the donor’s family and its loss, but still feels as if her new heart is only on loan.

“You have to know that this is not your’s … you’re borrowing it,” said the Vancouver homemaker. “It’s mine, but it’s also the person’s that died. It’s like you’re in a little partnership.”

National Post

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