Disabled man is given chance for a new heart
Seattle Times staff reporter
TACOMA — A 21-year-old, developmentally disabled man from Tacoma has been placed on a waiting list for a heart transplant at the University of Washington Medical Center.
Brian Cortez, who also is deaf and mildly schizophrenic, was listed for the transplant three weeks ago after UW physicians determined he was medically qualified and would return to a stable home environment after the surgery. He had been seeking a transplant for more than a year.
Cortez' quest for a new heart stirred a controversy a year ago after UW officials initially rejected him for a transplant because they didn't believe he could follow the difficult schedule of medications and tests. His mother and teacher said the decision was made without talking in depth with his support network, including his caregivers, other teachers or others who regularly witnessed his ability to comply with treatment.
Advocates for the youth threatened to file a discrimination lawsuit invoking the Americans with Disabilities Act, and for more than a year pushed the university to put him on the transplant waiting list.
Fishbein, a cardiologist, insisted the transplant program does not exclude any patient because of a disability. Acceptance hinges on the patient's medical qualifications and whether he or she can comply with the post-transplant schedules, he said. "The standard we use is that the patient have a reasonable expectation of doing well after the procedure," he said.
Fishbein says the UW has transplanted organs for several patients with disabilities, but he declined to be specific because of privacy issues. Nationally, no agency keeps track of the organs that have gone to patients with disabilities.
UW physicians have successfully treated Cortez with medications for more than a year, but his condition is deteriorating. He has a severely swollen heart, called cardiomyopathy, and congestive heart failure.
He has had an unstable home life — moving through several care facilities during the past year, for example, and becoming emotionally distraught and difficult several times. His mother, Gabriele Cortez, cannot care for him because she has congestive heart failure herself and other problems.
The key to his placement on the transplant list came when Cortez' longtime teacher and advocate, Ted Karanson, agreed to assume his sole guardianship and home care in the spring. Karanson said the UW then waited for three months to list Cortez, making sure that his residence would be stable in the Tacoma home of Karanson and his partner, Carole Moss.
"I'm very appreciative of what the UW has done," said Karanson, a teacher of deaf students at North Thurston High School. "They have done a lot in the (medical) management of Brian and in helping us through this maze."
The controversy over Cortez has occurred in the context of a chronic shortage of organ donors in the Northwest and nationwide. About 45 other patients also are on the waiting list for a heart transplant at the UW Medical Center, while physicians there perform only about 32 of the procedures a year. The center accepts patients from Washington, Alaska, Montana and Northern Idaho.
Nationally, about 800 patients a year die while waiting for heart transplants, including seven or eight in Washington state. More than 5,000 patients nationwide die while waiting for other organs.
Several medical ethicists have said the UW uses a widely accepted standard in accepting patients, but that Cortez' support system should be considered in making a decision. It is a difficult decision in any context, they said.
Cortez has lived a difficult life. During a traumatic birth, he suffered brain damage, which is the source of most of his disabilities. He grew up in poverty, his single mother struggled with alcoholism and the family moved around a lot, mostly in the Olympia-Lacey area.
For one year, when he was 13, he lived at the Washington School for the Deaf in Vancouver, where he was sexually abused by other students.
Cortez was first diagnosed with congestive heart failure in August 1999. He was treated with medications, but hospitalized again in January and February 2000. Physicians at Providence St. Peter Hospital in Olympia sent him to the UW for further treatment and evaluation for an eventual heart transplant, usually the only permanent solution for severe cardiomyopathy.
While at the UW, Karanson said, communication was poor with Cortez and he became confused, agitated and combative with hospital workers. Physicians said then, in his medical record, that he was unsuitable for a transplant because of his developmental disability and psychiatric condition.
At that time, Cortez was not sick enough to qualify for a transplant, but Karanson began pushing for the youth's eligibility for the time when he would qualify medically. The teacher and other supporters insist that Cortez does pretty well in life, enjoying school, reading and sports and, at one point, working part time. He lived in a private, independent-care home in Lacey and because of his disability, his home care and medical care are government-financed.
An arsenal of medications has maintained Cortez for the past year and a half. But he took a turn for the worse last fall and nearly died in December. Karanson said UW physicians said he qualified medically for a transplant, but a dispute between the youth's mother and his home caregivers had left him without permanent housing.
He lived temporarily in several care facilities, but did not adapt well. The independent-care home took him back in January, but he soon was hospitalized again in serious condition.
Fishbein, in an interview, would discuss only the medical aspects of Cortez' case.
But Al Johnston, who with his wife Lillian provided the home care, said he told the UW they could not commit to the long-term care of Cortez after a transplant.
Karanson said, "Dr. Fishbein told me, `You're really going to have to take the lead on this.' He said that I needed to do a lot more to assure there is stability in Brian's life." Karanson and Carole Moss decided to take Cortez into their home when he was discharged from UW Medical Center in March. Moss was appointed his backup guardian. And Karanson said he will retire from his teaching job next June to take care of the youth full time. A friend now shares the caregiving with Karanson and Moss.
With his weakened heart, Cortez has little energy now. He takes frequent naps during the day and sleeps 10 hours at night, no longer able to take part in his favorite pastime of shooting baskets.
He is in category 1B on the transplant list, the second-highest priority. Only one person at the UW is in the highest priority, 1A, for critically ill patients. But Cortez' donor must have the same blood type and roughly the same size heart.
Despite his troubles, Cortez is in good spirits. He thrusts his arms in the air when telling about his recent graduation from high school. He shows off his autographed photo of Seattle Supersonic Gary Payton. He speaks more readily now to doctors and others about how he feels.
"I feel good. I want to live. I want a new heart," he says, both speaking and signing the words.
Then he smiles broadly and his hands move with a flurry to illustrate his words: "You just open me up, put in the new heart, and sew me up."
Warren King can be reached at 206-464-2247 or firstname.lastname@example.org.