Ask Roy Maxfield how his kidney transplant changed
his life, and the 62-year-old retired state employee gets emotional:
“I may get verklempt,” he warns. Then he recites a story that sounds like a
fairytale, with a magical transformation that leads to a happily-ever-after
ending.
“Some people have diabetes and lose their
kidney function that way. Some hypertension, some polycystic disease. Mine
is from sometime when I was a kid, I had strep throat, and the infection
went to my kidneys,” he says.
By the time he was 30, his kidneys began to fail. By
the time he was 50, he was on dialysis —- spending four hours hooked
to a machine that pumped his blood through a filter, three times a week. He
discovered that he was one of the small minority of kidney patients who had
trouble with the dialyzer.
“The machine and my system did not get along. I
just sat there, but my body and the machine fought each other,” he
says. “I would clot off the filters, and the longer I was on it, the
higher my blood pressure would get. My blood would never get completely
clean.”
At work one afternoon, his secretary told him that
his doctor was on the phone. “What’d you have for lunch?”
the doctor asked, and Maxfield described his meal. “Oh, we can get
that out of you,” the doctor replied. He told Maxfield to get himself
to Memorial Medical Center; he was about to receive a kidney.
“By the time I got done talking to him, my
voice had gone up about five octaves, and they had to pick me up off the
ceiling,” Maxfield says. “I could not put the phone down. I had
to have one of my compatriots call my wife, because I couldn’t punch
the buttons.”
His office at the time was on the corner of Jefferson
and Walnut Street. To this day, he has no idea how he got from there to
Memorial. All he knows is that he awoke the next morning feeling like a new
man.
“It was night and day,” he says.
“The three years that I was on dialysis seemed like an eternity.
Three years post-transplant was like a moment. I still can’t get over
it. It’s remarkable.”
It has been 12 years since Maxfield received a kidney
from an anonymous deceased donor. In that span, he has seen his children
graduate from college, marry, and have children of their own.
“I never would’ve seen that,”
Maxfield says. “I tell people today that when you get a transplant,
you have a new lease on life. Someone gave you a kidney or whatever part it
was, you’ve got to make the best use of that part for the remainder
of your life to make it precious.”
Maxfield is now an officer with the Seven County
Kidney Fund, an organization that raises money to assist dialysis patients
pay for ancillary needs, such as medications and transportation. He
participates faithfully in annual fundraising walks. It’s part of the
way he tries to repay his donor.
“I don’t know if other people have
that same feeling, but how do you give a person 12 more years?” he
asks. “There’s not enough I can do.”
Maxfield considers his transplant a miracle, but in
the current medical climate, it’s a mundane one: to date, more than
258,861 Americans have received a kidney transplant, according to the
United Network for Organ Sharing (by comparison, there have been only
44,181 heart transplants in the U.S.).
But it was the kidney — the body’s
bean-shaped blood-cleansing apparatus — that paved the way for all
other transplants. In a 1954 operation involving a pair of identical twins,
a kidney became the first organ ever successfully relocated from one human
being into another. That operation was performed at Harvard Medical
School’s Peter Bent Brigham Hospital by Dr. Joseph Murray. He was
later awarded the Nobel Prize, for the transplant plus his subsequent work
on the development of anti-rejection drugs.
Murray’s successor at Brigham (now Brigham and
Women’s Hospital) was Dr. Alan Birtch, who moved to Springfield in
1972 to help establish Southern Illinois University’s School of
Medicine and the kidney transplant program at Memorial. Since then, more
than 700 kidney transplants (and 17 kidney/pancreas transplants) have been
performed at Memorial.
Despite this impressive pedigree, the program has now
been put on ice. Three weeks ago, officials at Memorial announced that they
were voluntarily suspending the transplant program. Patients on the
national waiting list as well as patients in the process of qualifying to
be added to the list were advised, in a letter from administrator Rebecca
Anderson, to transfer to one of three other transplant programs, the
nearest of which is in Peoria.
The suspension is bad news for anyone waiting for a
kidney transplant. Such patients are already suffering end-stage renal
disease, and many have other medical concerns, such as heart problems.
Shifting appointments 75 miles north to Peoria’s OSF St. Francis
Medical Center (or even farther southeast to St. Louis) doesn’t just
mean a longer drive for these patients —- some of whom were already
traveling from southern Illinois –- but also presents the challenge
of coordinating their cast of local physicians (primary care doctor,
diabetes specialist, cardiologist, etc.) with a transplant surgeon miles
away.
The letter and subsequent published reports indicated
that the suspension is due to the July retirement of Dr. Sumanta Mitra, who
filled the role of transplant nephrologist -– a specialist who
assists the surgeon in monitoring transplant recipients’
anti-rejection medications.
But national database statistics suggest the program
was not functioning normally even before Mitra’s departure. According
to the Organ Procurement and Transplantation Network, during the first six
months of this year, there were only four kidney transplants at Memorial
—- the lowest number in at least 10 years. By comparison, the
hospital performed 25 kidney transplants last year, 38 in 2006, and 40 in
2005 (see chart, below).
Mitra’s retirement was not unforeseen; he
graduated from medical school almost 50 years ago. Memorial officials told
the State Journal-Register the suspension occurred only because UNOS —- the
organization that oversees transplant programs nationwide —-
disapproved their plan to have a Springfield Clinic nephrologist serve as
interim transplant nephrologist. But several medical professionals familiar
with the transplant program say those officials had rebuffed an offer from
a more experienced Central Illinois Kidney and Dialysis nephrologist who
had volunteered to do hundreds of hours of extra work to qualify for the
transplant team.
In addition, the program had over the past 12 months
undergone wholesale personnel changes. Five of the nine core members of the
transplant team were terminated, and two administrators were re-assigned.
This shuffle occurred soon after the departure of Dr. Timothy
O’Connor, the transplant surgeon who had directed the program from
1996 through 2006.
Dr. Edward Alfrey —- previously with
Pennsylvania State University’s School of Medicine in Hershey, Pa.
—- took over O’Connor’s title as director in 2007. Though
O’Connor stayed on as transplant surgeon another 10 months, the two
men demonstrated opposite philosophies in practically every area, from how
to interview patients to their preferred immunosuppressant strategies.
Their differences likewise extend to how they handle media: O’Connor
agreed to be interviewed on the record for this article; Alfrey and his
superiors at Memorial and at SIU’s School of Medicine, where Alfrey
chairs the general surgery division, all declined to answer any questions,
despite repeated and specific requests delivered over a period of 10 days.
A kidney transplant program has three main functions:
to identify and maintain a list of patients who are good candidates for
transplant, to provide transplant surgery when suitable organs become
available, and to monitor transplant recipients’ health after the
operation.
The first function requires a rigorous evaluation of
each candidate to make sure he or she is sick enough to need a transplant,
and healthy enough to get good use from it. The transplant itself requires
the surgeon to make a judgment about the suitability of the donated organ
and what type of drug therapy should be administered afterward to prevent
the recipient’s body from rejecting the organ. The final function
— monitoring the transplant patient’s health — can
continue into perpetuity, as transplant recipients require blood tests at
least once a month to ensure that their new organs are functioning
properly.
O’Connor, now 48, was hired in 1995 by Birtch,
and became director of kidney transplantation when Birtch retired the
following year. Over the next nine years, O’Connor performed an
average of 31 kidney and kidney/pancreas transplant procedures annually (up
to 45 in the year 2000). He accomplished this feat by being on-call
virtually 24 hours a day, 7 days a week, for much of that time.
“I’ve left the wife and kids at the
beach. That’s just what I did,” he says. “Some people say
for your own sanity, you need to get away here and there. But . . . given
the vagaries of the [donor] system, in some cases, it’s kind of like
winning the lottery to get a good kidney at an early time. So if we could
do it safely and effectively, we would do it.”
In 2005, when Memorial announced it would bring in a
second transplant surgeon, to also head the surgery department at SIU,
O’Connor was thrilled. “I very much looked forward to it,
because I would have more weekends off,” he says.
The partnership between O’Connor and the new
surgeon didn’t develop quite the way O’Connor had envisioned.
Shortly after Alfrey arrived, in August 2005, philosophical differences
between the two eminently-qualified surgeons began to surface. Alfrey is
the one topic O’Connor won’t discuss, but interviews with
several longtime patients and more than half a dozen medical professionals
intimately familiar with the program chronicle a personality clash between
the two doctors.
“One was head of surgery, the other was head of
transplant, and they both wanted to be boss,” says Karon Morton, who
worked for Birtch, O’Connor and Alfrey in her 26 years as medical
secretary to the transplant program. “[One nurse] transferred to the
dialysis floor because she was tired of their BS. The two doctors gave
conflicting orders because they didn’t talk to each other.”
Some of their conflicts were simply judgment calls.
For example, another nurse, who asked that her name not be used, says each
of the two surgeons had his own preference about which organs to accept and
how to treat recipints, with O’Connor accepting less-than-perfect
matches and using more anti-rejection drugs, and Alfrey tending to accept
closer matches that would need a lower level of anti-rejection drugs.
“During surgery, some doctors will give
induction therapy — a high dose of immunosuppressant that will last
30 to 45 days,” she says. “That’s something Dr. Alfrey
rarely did. But there’s also literature out there that would support
that. So was it wrong? You could go either way on that.”
Most of the conflict between the two transplant
surgeons revolved around a much simpler issue: time. Alfrey instituted a
policy of holding “clinic” –- appointments with potential
or post-op transplant patients -– only on Tuesdays and Fridays.
“No other days, no other times, no
exceptions,” says another RN. In fact, Alfrey cancels some of those
clinic days to make monthly trips to Colorado or California, where his
friends and family live, the nurse says.
O’Connor, on the other hand, saw patients seven
days a week, even if he knew he wouldn’t get compensated.
“He would see patients on a Saturday. He just
did that,” says Donna Boesdorfer, the social worker who screened
transplant candidates for seven years. “There wasn’t an
appointment made, there wasn’t a billing sheet, but he would just see
them to make sure they were doing okay.”
When Alfrey did see patients, his bedside manner
contrasted sharply with O’Connor’s. Patients say he would
appear, ask a cursory question, and then vanish.
“He’ll look through your records and say
your levels are okay, got any questions? And out the door he goes,”
says Tim Mallicoat, who received a kidney in 2003, and a pancreas in 2006.
“I’ve seen him a couple of times, and I don’t care for
him that much, but I can’t do anything about him at the
moment.”
Virginia Huffman, who had a kidney transplant 10
years ago, has a similar complaint about Alfrey during checkups: “If
your arm fell off while you were sitting there, I don’t think
he’d care,” she says.
Management apparently preferred Alfrey’s style.
In December 2006, O’Connor learned that Alfrey was replacing him as
director of the transplant program. The demotion wasn’t publicly
announced, and as an associate professor of surgery at SIU, O’Connor
stayed on as a transplant surgeon 10 months longer, until his contract at
SIU expired. He then joined Renal Care Associates in Peoria, and is now a
transplant surgeon with OSF St. Francis Hospital there.
A lack of “face time,” as it’s
known in the field, isn’t the most serious complaint about Alfrey.
Former transplant staff members say that his strict office hours and
frequent absences made it difficult to schedule appointments to get new
patients approved for the transplant waiting list.
Once a patient got an appointment with Alfrey, he or
she had to be approved by the patient selection committee -– a group
of nephrologists, nurses and other transplant team members who met twice a
month to compare notes about the health of candidates. No one could be
approved without the endorsement of the transplant surgeon, and Alfrey
frequently skipped these meetings. Each time he skipped, the candidates
lost another two weeks that they could have been on the list.
“It would make me so mad,” says one team
member, who asked not to be named for fear of jeopardizing her career.
“Patients would call and ask, ‘Am I on the list yet?’ and
I’d have to say, ‘No, the doctor didn’t come to the
meeting.’ I couldn’t get a patient on the list.”
Once patients made it onto the list, their chances
for transplant were diminished due to Alfrey’s frequent trips out of
town. Morton, the former medical secretary, says Alfrey wasn’t like
O’Connor -– willing to interrupt a vacation if a kidney became
available.
“It’s vital to take an organ when
it’s offered to you, if you have a good match,” she says.
One former staff member claims that she had to
decline two perfect-match kidneys due to Alfrey’s travel plans.
Disgruntlement bubbled over late last year when the
transplant staff had to complete Memorial’s annual employee
satisfaction survey. Most of the staff used the narrative section to
express concerns about Alfrey. In January or February, eight of the nine
employees repeated these concerns in a letter to Dr. Mark Weaver,
Memorial’s medical director.
“The one thing that was in that letter was that
Dr. Alfrey wouldn’t attend those [patient selection] meetings.
He’d blow us off or he’d be out of town,” says one RN.
“It wasn’t us complaining about us; it
was us complaining that we couldn’t get help for our patients,”
says the unit social worker, Boesdorfer. “They would call us, and
they’d be upset; it was awful.”
In March, four people who signed the letter were
terminated.
Despite the personnel turnover, the transplant
program may have avoided the current temporary shutdown if Alfrey had
approved the nephrologist who volunteered to replace the retiring Mitra.
According to four medical professionals familiar with the transplant
program, Dr. Ashraf Tamizuddin, a Springfield nephrologist with 22 years
experience, volunteered in the spring of 2006 to take on the extra hours
and responsibilities necessary to qualify as transplant nephrologist.
Tamizuddin did not return phone calls seeking comment.
Guidelines for transplant nephrologists are published
in the UNOS bylaws. Those bylaws list five different qualifying tracks
— two involving traditional one-year fellowships, and three demanding
lengthy and well-documented clinical experience. Tamizuddin, according to
several sources, adjusted his clinical schedule beginning in spring 2006 to
spend extra, uncompensated hours at Memorial in order to meet the standards
listed in UNOS’s fourth track, involving clinical work rather than a
one-year fellowship.
All the clinical experience tracks require a
letter of support from the director of the transplant program. In May 2007,
when it became clear to Tamizuddin that Alfrey wanted only a fellowship
nephrologist and nothing else, and likely wouldn’t provide the
necessary letter of support, Tamizuddin stopped the extra work.
Last week, when news of the program’s
suspension became public, Memorial officials told the SJ-R that they had hoped to use
a Springfield Clinic nephrologist — unnamed in the article, but
apparently Dr. Sabrina Bessette, according to several medical professionals
— to serve as interim transplant nephrologist, but that UNOS had
decreed that “Memorial’s program must have a transplant
nephrologist with a full year of additional training.”
However, Mandy Claggett, a spokeswoman for UNOS, says
holding out for a fellowship-trained nephrologist would be a choice made by
an employer, not by UNOS. Under UNOS standards, all five methods (including
the one Tamizuddin was pursuing) are equally acceptable.
“UNOS bylaws provide multiple ways a kidney
transplant physician can fill the formal training requirement portion . . .
to qualify to become a center’s primary transplant physician,”
Claggett wrote in an e-mail. “The training requirements can be met
during a nephrology fellowship or through a combination of clinical
experience, if certain minimum conditions are met.”
Memorial officials say they hope to have the
transplant program fully-staffed and functional again after about three or
four months. Meanwhile, patients are being referred to three other
transplant programs -– two in St. Louis and one in Peoria, where,
ironically, O’Connor currently works.
Roy Maxfield was the last patient of Dr. Alan Birtch,
the surgeon who established Memorial’s transplant program. In the
ensuing 12 years — the ones Maxfield cherishes as a gift — he
has come to consider most everyone associated the program his extended
family. When he met Alfrey, during one of the surgeon’s infamous
drive-by appointments, Maxfield decided right away that someone needed to
explain what patients want from their physicians.
“When I got home I wrote a two-page
single-spaced letter to Dr. Alfrey, saying that I expected more. A couple
of weeks later I get a telephone call from a coordinator saying did you
really mean this? I said yes. She said do you want me to show this to Dr.
Alfrey? I said, ‘How else is he going to learn?’ “
At Maxfield’s next routine checkup, he
encountered Alfrey again. This time, the patient made it difficult for the
doctor to ignore him. “I just started asking open-ended
questions,” Maxfield says. “He was either going to answer or
walk away.”
In this way, he got five minutes of Alfrey’s
time and Alfrey earned a second chance with Maxfield: “For him, that
was a long conversation.”
Contact Dusty Rhodes at drhodes@illinoistimes.com.
This article appears in Oct 2-8, 2008.
