By the time Rita found out about it, Michael had spent $80,000 on towels, socks, underwear, toaster ovens, comforter sets, shirts and pants, one or two of every color. Over time, Rita did see and question some of Michael’s purchases, but when she asked about them he snapped at her, saying he could buy what he wanted as long as he was paying for it. He used credit cards, and the more he spent, the more credit he was offered by the credit card companies. Michael retrieved the mail before Rita came home. He also hid much of what he bought in his closet, which Rita never looked in, and in the closet of the guest room, and under beds.
“We have ten comforter sets. There are two of us!” Rita says. “We have so many towels and sets of sheets, I had to give hundreds away. And anything with an eagle. He decided he loved eagles.”
“I’d always liked them,” Michael says. “But before then, I’d never had to have them.”
Rita nods. “Yeah. He spent $80,000 on stupid stuff.”
In early 2006, after four years of gathering information and documenting evidence, Rita’s tenacity secured Michael a spot on the transplant list and a contract at Scripps Green. On February 10, he went in for a transjugular intrahepatic portosystemic shunt (TIPS) procedure, in which a bypass relieves the pressure of the fluid going through the liver. Although normally an outpatient procedure, blood infections landed Michael in intensive care for two weeks. During those two weeks, he was a backup for two livers (he was second in line for a transplant — twice), but the infections made him ineligible.
“He was on lots of monitors, and he was always making those alarms go off,” Rita says. “When he was in intensive care, it was like he was a dead guy.”
By that point, Rita and Michael were exhausted and ready to accept Michael’s death as imminent. Against the advice of doctors, as well as her own wishes for Michael to die in the hospital so he could be an organ donor, Rita brought him home and set up a hospital bed in the living room.
“I didn’t want to die in the hospital,” Michael says. “I just wanted to pet my cat, watch the big-screen TV, and die [at home].”
∗ ∗ ∗
A pizza, fruit, and cake buffet has been set up in the fourth-floor conference room at the Lifesharing office on Camino del Rio South. People file into the room, put their bags down on their chosen chairs, and fill their plates. When I sit at the large oval table (it won’t be big enough for the 20-some-odd people who show up for tonight’s meeting) between two women, the one on my left asks, “What do you have?” I don’t understand the question until she explains that she’s had her new liver six and a half years. I inform her I have all my original organs and that I’m here researching an article.
The woman on my right introduces herself as Mary. While she takes the pineapple off her pizza (“Not kosher,” she says) she explains that her new liver came from a 14-year-old boy named Jonathan. She got two thirds of the liver, and the other third went to a baby. That was 21 months ago.
“Jonathan is my angel,” she says.
At 7:00 p.m., Sharon Ross, director of public relations and community outreach at Lifesharing, asks for a round of self-introductions. Five liver, three heart, four lung, and five kidney recipients state their names and the length of time they’ve had their new organs. Their time from transplant ranges from 3 1/2 weeks to 24 years. Rita sits at one end of the table, next to Letty, one of Mario’s sisters, whom I’d met along with two other sisters at their childhood home back in April. Letty represents one of five donor families in attendance tonight.
Rita and Letty also represent Lifesharing’s current volunteers. They’ll share their experiences with those who have come to learn about volunteering their time with the organization.
Lifesharing is the sole organ-procurement organization for San Diego and Imperial counties, a population of nearly 3.5 million people. This means that every organ transplanted in this area is recovered by Lifesharing.
A total of 58 such organizations exist across the country, 4 in California. All are federally designated, and each is a member of the United Network for Organ Sharing (UNOS), which allocates distribution of organs across the country.
Though it is a commonly held belief that there is one waiting list per organ, and that each organ is flown to wherever the patient at the top of the list happens to be, the list shifts and changes each time an organ is made available. When organs are identified, the procurement organization enters information about the organs into the UNOS computer system and runs the match program. The list of criteria that puts a patient at the top of the list include the matching of organ characteristics (size, blood type, tissue type), medical urgency, time on the waiting list, and distance from donor.
The shortage of available organs, which causes people to use terms such as “miracle” and “hero” in the world of organ donation and transplantation, is due to the fact that it is the particular circumstances of death that make a person eligible to be a donor. Only brain death and cardiac death qualify. In the days before the advancement of legal definitions for brain death, all organ recovery used to be from cardiac death, though that’s now less common. As many as eight organs can be recovered after brain death; after cardiac death, often only the kidneys and liver are recoverable. Of the more than 2 million deaths in the United States each year, less than 1 percent are brain deaths.
Once a hospital patient has been identified as a potential donor, the hospital staff contacts Lifesharing. They send out a “first responder” to evaluate the medical and social history of the patient and follow along as doctors perform tests to confirm brain death.