Holding her own: Diagnosed with advanced kidney disease, local author and grief counselor Sukie Miller has had several friends and relatives consider the possibility of making a living donation of one of their kidneys. But so far none has panned out.
Thinking about donating organs after your death? How about coughing up a kidney now?
A shimmering blanket of warm, midmorning Sebastopol sunshine has wrapped itself softly around Dr. Sukie Miller, who sits waiting by the telephone, talking easily–though not without emotion–of her own possible death. Up above, a long, narrow skylight reveals a sky of blinding-bright blue, as Miller–her legs curled up beneath her, swaying gently as she speaks–sits below, her expressive 58-year-old face gliding in and out of the sunlight, literally glowing with light before easing back into soft shadow.
“I was always a smoker,” Miller says, laughing, shaking her head in mock shock and wonder, “so I thought it would be cancer that would get me. Also, I treat a lot of people with cancer, so I figured, ‘Hey! Cancer’s my disease.’ But, kidneys? What the hell is a kidney? Forget about it.”
Last March, as Miller prepared for a national book tour, she was diagnosed with advanced kidney disease. The popular lecturer, author, and therapist–ironically, one of the world’s leading experts on the subject of death and grieving–learned that her kidneys were failing at an alarming rate. She would need a transplant as soon as possible. Should her kidneys continue to deteriorate as she waits for a donor organ to become available, she’ll need dialysis.
Without such measures, she will die. “I couldn’t believe it,” she says. “I was sure the doctor had made a mistake. I crawled home, canceled everything for a week. You could say, in California-speak, that I ‘went into retreat.’ The truth is, I cowered in the corner, sobbing. I was a wreck, just overwhelmed.
“And I kept saying, ‘Kidneys? What did I ever do to my kidneys?’ ”
The answer is that Miller, according to her doctors, did nothing to bring on the disease. As many people, newly diagnosed with kidney disease, quickly learn, the condition is likely caused by some common viral infection picked up in childhood, or after years of unchecked high blood pressure. Unlike conditions such as heart disease, however, there is no known treatment to reverse the damage.
Which leads Miller to her next question.
“When do I get a new kidney?” she shouts, her hand tapping the phone lightly. “The average wait for a donor kidney, one that comes from a cadaver, is three to five years.”
According to U.S. government reports, as of Nov. 1, there were 43,317 people waiting for kidneys, and a total of 65,963 patients waiting for donor organs of any kind. The only alternative to waiting is to find a suitable living donor who is willing to give one of his or her kidneys to the patient in need.
It’s not an easy prospect.
When Miller–who has no immediate family–was first diagnosed, a flood of offers came in, an even dozen friends and associates, asking to be tested for suitability. Several were immediately eliminated for having a non-compatible blood type; Miller is type O, so her donor must also be type O. After a series of blood tests were performed, it turned out that two of Miller’s potential donors were a match, but after further reflection, the donors both backed away from their initial offer, expressing serious concerns that hadn’t been present at the time they first volunteered.
“I understand, of course,” Miller says, graciously. “Their impulse to offer their kidney was a very heartfelt one. If I’d needed a pint of blood, nobody would have given a second thought, but giving up a kidney–even when you can function perfectly on just one–is not something that is common in our culture yet.
“So I understand. But it’s been hard on me. I had my bags all packed. I was mentally preparing myself for surgery. And now I’m waiting again.”
The phone rings. She’s clearly been expecting this call. A second cousin, also type O, has offered to be tested. She’s calling to say that she just returned from having blood drawn and is preparing to send it off to the hospital in Los Angeles, where the surgery will be performed.
“God bless you!” Miller exclaims. “But I have to be completely straight with you.” She then tells her cousin of the two last-minute cancellations, and says, “Frankly, I don’t think I can take a lot more of that. So please think this through before you proceed, and be sure this is something you are really comfortable with.”
They talk about what happens next: by Wednesday morning, the hospital will know if the donor’s blood is rejected by Miller’s, and by Friday they will know if the kidneys are a match.
Miller shares details of the procedure, performed laparoscopically, that will have them both in the hospital for two to four days. “So here’s the really important thing,” Miller jokes. “If you give me your kidney, will I still be able to yell at you?”
Down to My Bones: An open letter from a bone marrow donor to a recipient.
THERE’S AN ORGAN shortage in America. According to the U.S. Department of Health and Human Services, of those now waiting for organs, only about a third are certain to undergo a transplant, leaving the remaining patients to wait, growing more ill as time passes. Best estimates are that 5,000 of those patients are certain to die before receiving a donor organ.
An estimated 18,000 to 20,000 additional organs each year are needed to meet current and projected demands.
There are many reasons for the shortage of available organs, the majority of which have always been taken from deceased donors. There’s been a sharp decline in those carrying donor cards on their driver’s licenses, and, ironically, a decline in fatalities as safety-belt and motorcycle-helmet laws have been more strictly enforced.
Also, as medical science improves the reliability of transplant procedures, and makes better drugs used to prevent the new organs from being rejected by the recipient’s body, there has been an increase in the number of transplants performed.
In 1998, 2,345 heart transplants were performed, 862 lung transplants, 4,487 liver transplants, and 12,166 kidney transplants. Of the last, 4,016 were donated by living people.
Last April, a congressional hearing took place before the House subcommittee on health and the environment to address the shortage of transplant organs. At that time, Dr. Robert Metzger, co-chair of the United Network for Organ Sharing’s Council on Organ Availability, made a bold proposal of a way to meet the demand for donor organs.
His suggestion solution: recruit more live donors.
In 1996, according to U.S. Morbidity and Mortality reports, there were 3,960 surgeries in the United States that involved living donors, a number that rose to 3,905 in 1997 and up to 4,100 by the end of 1998. This increase, though slight, reveals a very positive gradual trend.
Medically, live transplanted organs are preferred over cadaveric organs because, simply put, they last significantly longer. The half life of a cadaveric kidney is around eight years, compared to 15-24 years average for a kidney from a live donor.
Congress has been asked to help by requiring Medicare and other third-party payers to foot the bill for lost wages and out-of-pocket expenses that some donors incur when they undergo organ donation surgery. Additionally, such groups as the National Kidney Foundation would like to see Medicare pay for more than three years’ worth of anti-rejection drugs. Without the drugs, transplanted organs will begin to fail, requiring additional transplants, putting obvious strain on an already overstrained organ-transplant system.
In October, Vice President Al Gore announced a number of federal grants to various donor education programs, and unveiled a large-scale national public-awareness advertising program, aimed at increasing the country’s organ donation literacy level–and spark an increase in donors, living and not.
In Minnesota, a strong effort is under way to increase the number of donations from non-related living donors.
Most transplant units now ban any walk-in donations, and willing non-related donors–be they friends, business associates, or even in-laws–must undergo lengthy psychological tests that immediate family members are not subjected to.
Still, as the public education goes head-to-head with a powerful cultural squeamishness about organ donation, the number of non-related organ donors is gradually increasing. In September, an anonymous Minnesota woman made headlines when she was allowed to donate a kidney to a total stranger. An Arizona businessman gave a kidney to an employee’s son.
According to Margaret MacPhail of Santa Rosa’s Satellite Dialysis Center–where almost a third of the patients are on transplant-waiting lists–a local woman successfully donated a kidney to a member of her church.
“Doctors are much more willing to consider spouses and friends than they once did,” says MacPhail. “There’s been such a significant decline in available organs that a lot of transplant units have had to reconsider what they would call an appropriate donor.”
Some have even suggested that a move to anonymous organ donors–much like blood donors in modern-day blood and bone marrow drives–is the answer to our national organ shortage. An ethics debate on the subject is currently going on within the medical community.
“Because of the incredible emotional, psychological, and physical impact of donation, most transplant centers feel that some connection to the recipient is really important,” says Nancy Swick, transplant coordinator at Santa Rosa Memorial Hospital.
Swick is herself a transplant recipient. Seven years ago she received a kidney from her brother-in-law–something that would once have been strongly discouraged–and both are feeling wonderful today.
“I’m pretty lucky,” Swick says, clearly meaning it. “Anonymous donation may become common in the future,” she concedes, “but I would never want to see any strong-arming of people. If people decide they can’t be donors, for whatever reasons, that decision has to be honored.”
LYNN CHABOT-LONG, of Wisconsin, can quote organ donation statistics as if she were reciting Bible verses or the multiplication table. She laughs at the suggestion that most people who have either given or received an organ–including the members of deceased donors’ families–immediately become unofficial transplant educators.
“It seems that way, doesn’t it?” she says with a chuckle. “Once you’ve undergone this experience, it becomes a kind of passion, wanting to raise public awareness about organ donation.”
Thirteen years ago, Chabot-Long gave one of her kidneys to her then-seriously ill brother. It was an event, she says, that significantly changed her life.
“It was a marvelous experience, really, a once-in-a-lifetime thing,” she explains. “Most donors feel that way. It’s like giving birth. My brother was going to die. But today, he’s alive.”
She is quick to say that she studied the subject extensively before offering her own vital organ. “I wouldn’t have made the decision to do it if I wasn’t convinced that I’d come through it fine,” she says.
Her book, A Gift of Life: A Page from the Life of a Living Organ Donor, was written to guide others thinking about becoming a donor. She’s become a tireless organ activist, encouraging others to sign their donor cards, eagerly telling her own story to nervous folks who are thinking of becoming living donors.
“It’s a difficult thing to do, to become a living donor,” Chabot-Long admits. “I understand that. It’s not for everyone. But all it takes to be a donor is to sign your donor card. Only 19 percent of those who don’t carry donor cards have actually decided not to be donors. The rest are still thinking about it, or haven’t gotten around to signing the card.
“If all of those people signed their cards today, there wouldn’t be five-year waits for organs. And a lot fewer people would die waiting.”
BACK IN SEBASTOPOL, Sukie Miller hangs up the phone. She stretches her arms out, spreading her fingers in the sunshine, shrugging as if to say, “Now we’ll see happens next.
“I’ve started looking at my life, the way I have my clients look at their own lives,” she says. “And you know what? I’ve had a terrific life. I’m carrying no baggage, there’s nothing I’ve left unsaid or undone. I love my life. And now I’m not ashamed to say that I want more of it. I want to live more. I want to learn more.”
Asked what she’s learned so far, as a result of her illness, she closes her eyes. After a moment, she says, “When I was first diagnosed, and I started getting calls from friends saying, ‘I’ll give you a kidney. Take one of mine,’ I learned something I never knew.”
As she leans forward, her face begins to glow again, illuminated by the light.”I always knew I was popular,” Miller says with a sigh. “But I never knew I was loved.”
For information about learning your donor type, call the Blood Bank of the Redwoods at 545-1222. Contact Heart of America at 800-366-6711 for information on how to become a bone marrow donor.
From the November 11-17, 1999 issue of the Sonoma County Independent.
© Metro Publishing Inc.