This time last year was particularly stressful and depressing for many Americans, not unlike my wife Liz and I. We faced our first holiday season—Thanksgiving imminently, Christmas and New Year’s on the calendar horizon—with no chance of celebrating in person with our children, a first for us as a family. But in addition to COVID-imposed separation—we had not touched, kissed or hugged our children in nearly a year—Liz learned from her Easton nephrologist that her kidney disease had just advanced to Stage 5.
That’s red alert on the vital-organ countdown.
A stark choice confronted Liz: surgery to prepare a port for her to receive life-saving but lifestyle-draining dialysis, or await a match—living or deceased—for a new kidney.
As this story is meant to convey vital information, it is not a spoiler to reveal so soon that there is a happy ending which could be yours, too, if you or a loved one is ever in similar need.
Liz had three potential volunteer donors—potential not in the sense that she doubted their willingness to donate a “spare” kidney. (Most of us are born with two but can live full and healthy lives with one kidney.) The three—our son and daughter plus a friend, all living on Long Island, where we also resided until our 2017 retirements—were willing volunteers. But were any of them a kidney match for Liz? After a battery of tests, Liz’s volunteer trio all struck out as donors, leaving her to calculate the long odds of finding a deceased adult who happens to have registered as an organ donor and further happens to be a match for Liz whose name still further happens to rise to the top of a list of potential recipients for a precious kidney that remains viable 48 hours on ice outside the body of the lifeless donor.
Odds are, we were told, Liz and tens of thousands of others like her, could wait three to seven years for such a kidney. Maybe more. A patient at Stage 5 may not have three to seven months, let alone years, to survive without going on dialysis, which requires being hooked up to a machine for three hours three times a week to do the job of a healthy kidney—eliminating toxins from the bloodstream and replenishing with fresh blood.
According to U.S. Health and Human Resources Department statistics, about 5,200 Americans died in 2020 waiting for a kidney transplant. That’s 17 deaths each day, not including those with kidney disease who are not on waiting lists. Some die unaware of their imminent kidney failure until it’s too late. Regular blood tests ordered by her primary doctor and later by her nephrologist alerted Liz to the progression of her disease over a period of years from Stage 3 to Stage 5.
The happy ending for Liz and our family began with a recommendation by Dr. Anish Hinduja, the University of Maryland Medical System nephrologist whose primary office is off Idlewild Avenue in Easton. He suggested that Liz apply to the UMMS Paired Exchange Kidney Program database. Within a month, Liz had a kidney lined up with our daughter Rachel as a donor. Never mind that Rachel was not a match for her mother. The database of patients in need of kidneys includes other donors who are not a match for their loved ones either. Rachel was a match for another person while his or her volunteer donor was a match for Liz.
We had a tentative date for dual transplant surgeries just before Thanksgiving. But we got word from the University of Maryland Medical Center, downtown Baltimore, that the donor and recipient paired with Liz and Rachel requested a postponement until after the first of the year. We were not given a reason and, as each pair remains anonymous to the other, we guessed that the delay simply fulfilled a wish to wait until after the holidays.
Very early on Jan. 28, I drove Liz from the Inner Harbor Sheraton Hotel, one of the few open downtown at the height of the pandemic, to drop her off at UM Medical Center’s main entrance on Greene Street. Because of COVID, I was not allowed to be with her in the hospital. The medical staff timed her arrival a half hour later than her donor’s to protect each other’s anonymity. At 5:15 the next morning, I hugged Rachel good-bye and watched her walk through the same rotating doors to donate one of her kidneys to the loved one of Liz’s donor.
Since I could not visit either my wife or daughter, I returned home to Easton to await Rachel’s discharge. Donors have a much simpler surgery, a laparoscopic procedure by which the kidney is extracted through a small incision at the belly button. Most donors can go home the next day. But due to a minor snowstorm, Rachel was allowed to stay an extra day or so to keep her mother company. Liz was discharged in six days. Both have been fully recovered for months—Rachel several weeks earlier than her mom.
Although the success rate of living-donor transplants at UM Medical Center is 98.33 percent for one year or more of kidney function, Liz’s surgeon, Dr. Georgios Vrakas, put us further at ease during a final round of pre-surgery check-ups. While the identity of each donor and recipient remains anonymous, the affable doctor shared one reassuring detail. “You’re getting a young kidney,” he said with a broad smile, moments after describing the long- and short-term prognosis for transplant patients. (The typical kidney from a healthy living donor can be expected to last 15-20 years.) I cracked a joke to break the tension stoked by morbidity statistics—alleviated in our case by the “young kidney” Vrakas had just promised Liz. “That doesn’t mean she needs to go back on birth control, does it?” The doctor’s laugh felt reassuring. And my telling that joke now stands as validation of the success of the surgeon and the medical team attending Liz.
While a little more than 150 paired kidney exchanges have been performed at UMMC since the inception of the program, more than 6,723 kidney transplants have occurred there since the late ’80s—2,306 from living donors. How many more might have participated in paired exchanges, saving at least two lives, had they known such volunteer sharing existed?
But now you know.
Paired Kidney Exchange: Two Donors Save Two Lives
Paired kidney exchanges, which exponentially increase the chances for a person in need of a life-saving transplant to find a living-donor match, began in 2007 with the establishment of the National Kidney Registry. The University of Maryland Medical Center in downtown Baltimore started participating in the paired exchange program one year later and has since performed more than 150 such transplants.
Simply put, paired exchanges work this way: I’ll give your mother my spare kidney if you give my mom yours. (Or fill in other applicable loved ones.)
If a prospective kidney recipient whose volunteer donor is not a match, due to blood type or antigens poised to reject a transplanted organ, the registry database can locate mutual matches with another pair in a similar circumstance. As a result, the pairing extends and immeasurably improves the life of two recipients for years, if not decades, depending on age. (Most such transplants are covered by Medicare, coinciding with the age of a majority of patients needing transplants. Plus, private programs for rare cases, such as infants with birth defects, and other younger patients, help cover potentially tens-of-thousands in costs.)
Dr. Daniel Maluf, UMMC’s director of transplant surgery involving kidneys, livers, hearts, lungs and pancreases since 2020, says that just since his time at the University of Maryland School of Medicine and Medical Center, laparoscopic techniques have greatly increased success rates of transplants, especially kidneys, and similarly reduced time of recovery. “When you have 114,00 Americans waiting for a kidney or liver and half a million on dialysis,” Dr. Maluf says, “all of them facing a waiting time of at least three to seven years for an organ donation from a deceased person, you see the urgency of finding a volunteer living donor.”
The trouble with kidney disease, other than that it will kill you if left undetected, is that you may not know you have it until it has progressed past critical Stage 5. “The older you get, the more you may lose kidney function,” says Dr. Anish Hinduja, an Easton-based University of Maryland Medical System nephrologist. “At 1 percent loss a year, you could lose 30 percent of GFR by age 70.” (GFR, glomerular function rate, measures how well or poorly your kidneys eliminate wastes that, if retained, are toxic to your body.)
My wife Liz was 71 when lab tests ordered by Dr. Hinduja showed that her kidney disease had reached Stage 5. “You may have critical kidney disease and not know it,” the nephrologist says. “You might notice some discoloration in your urine, but unlike liver disease you might not feel sick.” Regular blood and urine tests, even just once a year at age 55 or 60, can give you a heads up, Dr. Hinduja advised.
Six months after my wife’s successful kidney transplant in a paired exchange involving our daughter, minimally invasive laparoscopy surgery has been applied to recipients of kidney transplants. This follows by several years laparoscopy surgery reducing risks and recovery time for donors. Previously, some potential recipients of a loved one’s kidney refused because the donor would undergo major surgery that required removing two ribs to extract the kidney. This meant that the donor, often much younger than the recipient, missed weeks, sometimes months, of work or schooling. In our case, not unusual for mothers and daughters, Liz and Rachel got into a good-humored snit over order-in dinner the evening before surgery. “You know,” our daughter joked, “it’s not too late for me to change my mind.”
Rachel, of course, didn’t change her mind. And with current surgery protocols, a kidney donor may go home as early as a day or so with only a tiny incision at the navel. While a recipient’s laparoscopy incision is now a bit larger, the patient receiving a new kidney may be discharged in as little as three days. With the more invasive surgery my wife underwent in January, entailing an incision not unlike that of a caesarian delivery, about six days may be required before discharge from the hospital.
Recovery, however, involves more than just healing from surgery. The patient must adapt to a foreign organ in her body, one that she cannot live without unless she goes on dialysis. “For the best result,” Dr. Maluf says, “and the longest post-transplant life, a living donor kidney is far preferable to that of a cadaver.” Having a living donor, especially a direct match with a related volunteer, makes it more likely the transplant will not only be successful but that an otherwise healthy recipient may enjoy normal renal function for years or even decades.
While a kidney from a cadaver can also be lifesaving and is far preferable to dialysis, more can go wrong with such an organ, primarily because the clock is ticking from the moment the donor expires. However, among all the major organs, kidneys remain viable longer than liver, pancreas, heart or lungs—48 hours or more on ice, according to Dr. Maluf. And while many patients on dialysis can still receive a kidney transplant, chances of long-lasting success are reduced. Patients who have been on dialysis for an extended period may not be deemed viable candidates.
Dr. Maluf is one of eight surgeons on the UMMC transplant team, assisted by a staff of nine, including nurses and anesthesiologists. A pre- and post-clinical team prepares patients for the procedure and follows up in their recovery, including a nurse coordinator who may consult with the kidney recipient in person or remotely for six months and up to five years depending on the case. Four surgeons are required in a more or less simultaneous paired exchange. Or, as in my wife’s case, two surgeons are assigned to a paired exchange performed on consecutive days.
Among the surgeons on Dr. Maluf’s transplant team is Dr. Silke Niederhaus who is herself a recipient of a kidney from an eight-person paired exchange at UMMC. It was her second “new” kidney. As a child growing up in Germany, she contracted a severe strep throat infection at 8 and, after a stint on dialysis following renal failure, she received a kidney transplant. On the day of her first procedure, her surgeon asked, “What do you want to be when you grow up?”
The little girl responded, “I want to be a transplant surgeon.”
And now, here she is.
Her first new kidney lasted 30 years. THIRTY YEARS! But by the time she had become a transplant surgeon herself, she needed another one. As both a surgeon transplanting vital organs and a two-time recipient of a kidney, Dr. Niederhaus is uniquely qualified to speak about important lessons in caring for a precious new kidney, especially by strictly adhering to the regimen of taking all prescribed medications to avoid rejection.
“Last I checked,” she says, “kidneys don’t grow on trees.”
Steve Parks is a mostly retired journalist now living in Easton.
UNIVERSITY OF MARYLAND TRANSPLANT CENTER
16 S. Eutaw St., Baltimore; 410-328-5408, umms.org
UNIVERSITY OF MARYLAND SHORE MEDICAL GROUP—NEPHROLOGY
* 5 Martin Court, Easton (call 410-820-9823 or search umms.org for all related Shore services)
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