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Story and photos by Maryalice Yakutchik
Part I: Invitation Issued
From left, Janet Hiller, Kathy Dane and Nikki Lawson, transplant
nurse coordinators, Incompatible Kidney Transplant Program,
Johns Hopkins Medicine. They work behind-the-scenes, clocking
countless hours to coordinate transplants for multiples of
incompatible donor-recipient pairs, responding to the
ever-evolving nature of these complex exchanges in the months,
weeks, days – even hours -- before anyone enters an OR.
Eleven days out from transplant
On a day as gray and foreboding as February gets, the mood among the matchmakers – Janet Hiller, Nikki Lawson and Kathy Dane – is one of cautious optimism. Their warren of cubicles, tucked away in a hard-to-find corner, is known officially as the Incompatible Kidney Transplant office. They call it “the cave.”
Most aptly, it’s Mission Control.
The latest mission – a domino donor kidney transplant already three-months in planning the creative shuffle and shifting of pairs of incompatible donors and recipients – is potentially moments away from assuming historic proportions and a blueprint for future such missions nationwide: Four hospitals in as many states will transport and transplant the kidneys of 10 donors into 10 recipients on Valentine’s Day.
The only glitch at this moment, less than two weeks out from Valentine’s Day, is that the No. 9 recipient and No. 10 donor haven’t a clue that they’re the final members needed in place for all of this to work.
It’s time to invite them.
Kathy dials the prospective recipient’s home phone. While it rings, she scans his patient record – O-positive; 6-feet-7-inches tall; 100 kilos; a diabetic for 30 of his 56 years, with heart disease.
It rings some more. Maybe he’s having dialysis. . .
She hangs up. Dials a cell number.
“Hey! How are you? . . . I hunted you down . . . I have good news for you! Janet actually found a compatible donor for you – blood-type compatible – meaning you won’t need any plasmapheresis treatments at all.
“A 54-year-old gentleman, O-blood-type, who wants to give to his wife, but can’t.”
Kathy provides a concise context, explaining briefly how she and her matchmaking colleagues have arranged for 20 incompatible recipients and donors to come together in a 10-way domino exchange February 14. A 10-way, that is, if the patient on the other end of the phone is willing. And if his sister-in-law donor who, still oblivious to the news and living 1,200 miles away, is both amenable to giving her organ to a stranger and able to fly asap to Baltimore to be a part of Hopkins’ history.
Kathy Dane proposes to a donor that he drop
everything and be No. 9 in what’s shaping up as a
The news sinks in.
Her patient who was scheduled to undergo transplant with his sister-in-law’s incompatible organ grasps immediately how lucky he is to be invited to this first-of-its-kind Valentine’s Day kidney party. The compatible organ of a stranger means less risk of complication and rejection; means not having to undergo any of the treatments that would be necessary if he were to stay paired with his sister-in-law.
He yells for his wife to listen in on the call.
“If there’s any way for you to come to Hopkins next Thursday for pre-op, that would be the optimal situation,” Kathy suggests.
There’s no maybe. No let-me-think-about-it-if-I-can-get-off-work-and-arrange-a-flight. No waffling whatsoever when someone calls out of the blue on the grayest of days and offers life.
Kathy shoots a thumbs-up to Janet and Nikki.
The final recipient is in: It’s a 10-way!
All systems are GO.
Part II: Invitation Declined
Nine days out
“This could not be more complicated,” Dr. Bob Montgomery remarked just yesterday during a cram-packed briefing of several dozen of the 100 or so Hopkins docs, nurses, pharmacists, psychologists and support staff taking part in the10-way.
Janet was delivering a schematic-heavy Power Point presentation about all the complex medical and logistical particulars of 20 recipients and donors in four different hospitals; was explaining whose kidney would go where, to whom, at what time, in what order, in whose OR, in which state.
Was too busy to knock on wood.
And now, a day later, it is way more complicated.
A hospital in Colorado suddenly opts out, leaving a gaping hole in the middle of the paired exchange.
Time to scramble. Decades of experience in transplant logistics – not to mention skills as the mother of three teen-aged girls – make Janet a master-scrambler.
She sits at her computer in Mission Control, accesses the data base of incompatible pairs, searches for a recipient and donor with the right criteria to plug the gap. It’s no small feat. Amazingly and serendipitously, a name rises to the surface, a person with whom Janet is well-acquainted. A patient who regularly phones in to Mission Control, urgently seeking a kidney in exchange for the 26-year-old organ that her incompatible donor will bring to the table: “I have children,” she pleads.
Nikki Lawson practices resourcefulness and
resilience daily as the domino exchange evolves.
Janet calls, fills her in a bit about the Valentine’s domino exchange, and invites her to accept the gift of life from a female donor who’s 50ish, healthy and, most importantly of all, compatible.
The middle-aged patient balks, citing the fact that she’s bringing a young kidney to the table and therefore it’s not exactly fair – is it? – that she should be receiving a middle-aged kidney in return.
Unflappable, Janet reasons with her: Even in the context of the incompatible program, which serves the most-difficult-to-match patients, this woman is one tough match. It would likely take a few years – at least – until another opportunity might present itself.
She doesn’t have to say it -- it’s understood -- that the woman doesn’t have that kind of time.
Then again, maybe she does have to say it. What else is there to fill the recalcitrant silence issuing from the other end of the line?
Janet studies a snapshot pinned above her desk of her brother, a former general in the U.S. Marines. He had it easy, she thinks: He could issue commands: JUST DO IT!
As three months worth of work boil down to this moment, and nine other patients’ health or lives hang in the balance, she’s tempted to bark an order.
Instead, she cajoles.
The patient doesn’t budge. Not now to Janet. Not later to Dr. Montgomery.
Part III: More bad news
Four days out
Donor No. 2, healthy when he joined the paired kidney transplant program in order to give a kidney on behalf of his nephew, suddenly is deemed unable to participate. He’s battling an infection from a pre-op test, the results of which won’t be conclusive in time for the swap.
That makes three strikes. First, the collapse of the Colorado connection. Second, the intractable patient. And now, a donor at the top of the exchange needing to bow out.
Janet composes an email to her colleagues about the 10-way: It’s off.
Part IV: Invitation Rescinded
Three days out
Janet Hiller describes donors as “the essence of
humanity. They are my teachers. They are all I hope
Janet sends a new email: “What a difference 24 hours makes! The multi-way exchange is back on schedule . . .”
Resilience and resourcefulness on the part of the matchmakers has resulted in some semblance of the original domino donor transplant coming together. They figured they could resurrect a 2-way; maybe even a 3-way. That it’s now back up to a 6-way is great news.
For many patients, that is. But not all.
Now comes the hardest work of all. The matchmakers must contact the recipients who must be abruptly uninvited, by no fault of their own, or anyone’s, really.
Janet calls Recipient No. 9 who, just a week ago, was jubilant to join the domino. He’s gracious. Upbeat, even. He will revert to Plan B: He’ll get a kidney from his sister-in-law later in the month, as originally planned. He’ll need plasmapheresis treatments; not as ideal as if there were a compatible kidney, but it’s okay. He’ll be okay.
Janet saves the worst for last.
Recipient No. 3 is a 25-year-old who can’t, because of blood type and tissue antibodies, tolerate her willing donor’s kidney, no matter how many high-tech filtering treatments.
This patient has no options but to trust that the matchmakers will figure out some way, sooner rather than later, how to pair her with another compatible donor.
So she does. But not without tears.
Part V: The End
The night before
The matchmakers get the news they’ve been waiting on all day: Recipient No. 6’s stress test is in.
At 70, he’s been cleared for surgery.
“I’ll pick you up on my way in tomorrow,” Janet offers to Nikki. “4 a.m., okay?”
Barring any unforeseens in the next 8 hours, the domino exchange they’ve spent three months arranging – and rearranging – is set to begin.