Earlier this month I blogged about a kidney exchange chain at Virginia Mason Hospital, in Seattle, initiated by a non-directed donor who had heard an interview about kidney exchange on Freakonomics. Subsequently, my colleague Elena Cryst, whose dad is a transplant nephrologist at that hospital, sent her the email below about a short talk he'd prepared, which they have given me permission to reproduce with minor edits. (They also note that "the participants OK’d sharing this so no HIPA violations.")
Dr. Cryst writes:
"I’m a transplant nephrologist, and
I’m sharing this story on the insistence of these four patients who want
to get their story out and encourage others to participate in organ donation
and increase the options for kidney transplants in our country”
This is a photo of 4
people – I hope you can see them as you read this.
Three
out of four of these folks in the picture just so happened to
have appointments in my Monday AM clinic. I’ve
been taking care of kidney transplant patients for thirty years, but by the
end of clinic, I was astounded by seeing how much this
meant for each one of them and the different reasons why.
As this morning went on I heard this story
from three of the four points of view. It very
much took me by surprise how much had changed for all
four.… It was just another day in the office, but this story is
striking and they all wanted to
share it with everyone in hopes more people can receive transplants.
THE PHOTO:
THE STORIES: First with hat on backwards is
DC my patient. A naturally shy and private person. Happiest
I’ve seen him in three years but has had many disappointments. It
has been an emotional roller coaster, as three years ago he thought he was
passing a kidney stone- only to learn he had an
advanced kidney disorder and soon would
either need to get a transplant or start on
dialysis. There had been lots of struggles to get to the
point of transplant…. one by one, donors came forward but were disqualified due
to minor health issues. Finally one did get through testing and
qualify to donate, only to find out she was not a match. He was
devastated again. After working with our program, we were
poised for a paired donor exchange but with time running out…we needed a
non-directed donor to step forward. If someone could donate for DC, his
donor would give a kidney for the next person on our waiting list and he would
not have to start the process of dialysis.
Next to
DC’s left is Steve, healthy tugboat pilot who
commutes to his home inland and on the way listens
to lots of podcasts. Freakonomics Radio had one about Al Roth, a Nobel
prize winning economist at Stanford who researches how to create markets for
things that don’t have a price. He was the economist who worked to
redesign the resident matching program to accommodate couples in the 1990’s and
was fascinated by the challenge of how to allocate kidneys from live
donors. This is another problem of how to make a market for something
that could not be exchanged for cash. He and colleagues designed the
system and did the math. And won the Nobel prize! Steve caught on
to a few facts in the story – like the huge
number of potential living donors in this country, and the benefit that could
be afforded to those waiting for a kidney from a deceased
donor. The fact that the number of such paired donor exchange transplants has grown from only 2 in 2000 to 1000 in 2018, and said sign me
up. His generosity and courage started this chain of events. Al
Roth’s work is changing the way we are doing kidney transplants at my
hospital and bringing in more and more living donors together with recipients
they don’t know. The process was hugely important to
Steve and it was icing on the cake that he was able to meet DC after it was
done. They all mutually agreed to make the process open rather than
confidential which was their personal choice.
Next is Debbie from
Ukqiagvik Alaska (formally Barrow) – the literal ‘end of
the earth’ the northern most point in the USA above
the arctic circle in Alaska. Debbie is an Alaska native who
toughed it out with barely enough renal function for
many years but time was running out for her as well.
She was at the very top of the waiting list
and she was waiting for a deceased donor kidney at our far away transplant
center. The logistics of urgent travel to a faraway city fast enough to
get a kidney transplant from a deceased donor -- while the clock was ticking --
made it much more better for her to have a living donor transplant that could
be scheduled. As you can tell Debbie has been delighted with her new
kidney. She is a long way from home for a few months, but enjoying the
challenges of being in the city, even trying foods not
part of her diet - like cucumbers (“not my
favorite” she says) - not often available above the arctic circle!
She is here with family for a few months recovering and
adapting to having normal kidney function again.
Next is Wendy – Journalist,
community organizer and friend of DC. She did
gently insist that he let her get tested to donate.
He was apprehensive and certainly did not want to ask her.
But, as usual, Wendy prevailed. In
exchange her kidney went to
Debbie who now feels better than she has in years. Wendy is being
‘adopted’ by the women in Ukqiagvik and in clinic that
morning, she was wearing the traditional hoodie blouse
with big pockets that Debbie’s sisters back home had specially
made for Wendy. She is thinking
about how to make the trip up north to
see her new family of friends. It was Wendy who
also gently admonished me for not doing a better job of telling our story to
others. She strongly felt that we need to point out that her
life and Steve’s are forever changed for the better - - as well as the
obvious benefit for DC and Debby.
Although this
is the kind of work we do every day, we
would like to do many more living donor transplants for people and take more
people off the waiting lists and out of the dialysis units. There are a
lot of moving parts and a lot of people who contribute, but
we can scale it up. The more scheduled procedures we do, opposed to deceased
donor surgeries which are by necessity emergency surgeries, the greater our
impact can be. Each living kidney transplant also frees the deceased
donor kidney to go to someone else - in effect doubling the benefit.
Thanks to Al Roth, there is now a new market for getting our willing donors
together with recipients they do not know. We always respect privacy and
our default is to keep this process of ‘entering the market’ safe and
anonymous. But, as in this case, the participants can decide to share
their experience, meet each other and . . . as Wendy said, “get the word
out.” In fact this photo captured the moment after surgery where
this group organized a first meeting on their own and went off for lunch.
As a kidney transplant physician, I know we have the systems in place to grow
this work. Facilitating living kidney donation benefits not only more
recipients, but it positively changes lives of these donors. It
really positively affects lives of everyone involved. . .even the doctors like
me…and I bet even the economists!
Cyrus Cryst MD FASN
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