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Kinship binds organ recipients, donors' families

Published on NewsOK Modified: February 22, 2013 at 11:02 pm •  Published: February 22, 2013

MANCHESTER, Conn. (AP) — After Lauren Maston, 33, received her heart transplant at 29, a letter from the donor's mother helped send her into a deep depression.

She was already in a vulnerable state. She'd learned years before, after a heart valve operation to repair damage caused by chemotherapy she'd received at 13 to treat bone cancer, that she had difficulty healing. Recovering from the transplant proved to be no exception. She came down with a lung infection, experienced painful swelling and weakness, and her weight plummeted to 70 pounds. Doctors also had her on high doses of birth control because they didn't think she was making enough estrogen, and to top it off, she and her fiancé at the time were having problems.

"Between my hormones being off and getting the letter from the mother, and me and my fiancé — I think when I got the letter from the mom, I think I read it wrong," Maston says.

She knows little about the donor but his sex. Because of her own size, she assumes he was a child.

Maston hasn't read the letter in years, but to the best of her recollection, it asked that she "please take good care of his heart."

"I felt this enormous pressure that I had to do great things," she says.

As a secretary in Hartford Hospital's intensive care unit, where she was once a patient waiting for a new heart, Maston has met many transplant recipients who have experienced similar post-transplant depression.

Colleen Brown, who as a transplant nurse practitioner at Hartford Hospital works closely with organ recipients, says such depression among recipients isn't uncommon; they're faced with a number of difficult burdens.

"They are faced with reality of death as they're waiting, the fear that the transplant isn't going to happen, and then," she says, "having to live with the reality that someone else has to die to help (them)."

Brown is also intimately familiar with being on the donation end of the procedure. Eleven years ago, her sister Deborah, "Debby," who had previously made known to the family that she wanted to be an organ donor, died in a car accident at the age of 31.

Colleen says Debby was "the fun one," a giggly, beach-loving, preschool teacher with a passion for children. While doctors kept Debby on life support to maintain the viability of her organs, the family struggled to absorb the enormity of what was happening.

Because the transplant team's flight was delayed, their wait was longer than it would ordinarily have been.

"At one point we stopped to ask my parents if they were OK with this, 'We don't have to go through with it if it's making it too hard,'" Brown says.

That was in 2001, when even though 1968's Uniform Anatomical Gift Act stipulated that "an individual should be able to control the disposition of his or her own body after death," there was not yet an online donor registry that could be accessed by organ procurement organizations (OPOs), such as LifeChoice Donor Services, to confirm the patient's wishes.

"By law, we are supposed to follow that directive," says Hartford Hospital in-house LifeChoice donation coordinator Jami Tyska. "However, the only people who knew about that directive at the time was the DMV (department of motor vehicles)."

The culture at the time, Tyska explains, was to defer to the next-of-kin. Since then, however, laws have passed making online donor registries — which automatically include DMV organ donor information — accessible to OPOs, and next-of-kin may not override that first-person consent.

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