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1 day ago · Living and Breathing His Truth About Organ Donation

At 71, Robert thought he was too old to qualify for lung transplantation. Affected by a devastating, rare disease that destroyed his lung function, the Florida retiree had all but given up hope that the illness wouldn’t claim his life — until his Mayo Clinic medical team stepped in and encouraged him to pursue a transplant.




When 71-year-old Robert received a double lung transplant at Mayo Clinic, the lungs he received from an organ donor not only gave him a second chance at life, but also fueled in him a new purpose.

“I
feel like that organ donation was a gift from God,” says the Florida
resident. “He kept me on this planet for a reason. I want to get the
message out about organ donation.”

Robert never imagined he’d become an advocate for organ donation. As a fit and healthy retiree who used to play college athletics and always cared for his body, Robert had lived a life free of major medical problems. But six years ago, he developed shortness of breath and was diagnosed with pulmonary fibrosis, a progressive, irreversible condition that results in lung tissues becoming scarred and dysfunctional. While treatments exist to slow the progression of pulmonary fibrosis, lung transplantation is the only cure.

Since Robert’s lung transplant, which took place on March 17, 2018, at Mayo Clinic’s Florida campus, he has spoken widely about his disease and the need for more organ donors. He’s written letters and made a video detailing his story and outlining the bleak statistics faced by individuals waiting for a transplant.

According
to the nonprofit group Donate
Life
,
which works to increase organ donation, only 58% of adult Americans are
registered as organ donors. While one organ donor has the potential to save
eight lives, each day, 22 people on organ donation lists die waiting for an
organ. Approximately 114,000 U.S. residents now are waiting for a new organ.

“What
I want to resonate through this is this isn’t about me. It’s about the
wonderful and the marvelous things that Mayo Clinic does, and the absolute need
for more organ donors,” Robert says.

Devastating diagnosis

As
is the case for many individuals waiting for an organ donation, Robert faced
death prior to his transplant. Although the first signs of his pulmonary fibrosis
were subtle, within just a few years Robert was oxygen-dependent.

“In
2013, my wife, Susan, and I took a trip to Vail, Colorado, to visit our son and
his fiancée,” Robert says. “I’m originally from Denver, so I didn’t
give any thought to problems with the altitude. But after the first day, I
became ill, and I went to the hospital. They said I had acute altitude
sickness, which is normal for that part of the county because Vail’s at 8,000
feet. But they also said there was something going on in my lungs that they
couldn’t identify.”

When
Robert returned to his home in a suburb of Jacksonville, Florida, he continued “feeling
crummy,” he says. “I procrastinated, but I finally went to my doctor,
and he sent me to a pulmonologist. What I was was out of breath, but I didn’t
realize it.”

The
pulmonologist diagnosed him with pulmonary fibrosis, which according to the National
Institutes of Health, affects only about 100,000, or 0.03 %, of Americans.
Robert immediately sought a second opinion and visited an out-of-state
facility, where he was told to return home because he had one of the nation’s
premiere transplant facilities, Mayo Clinic, in his backyard, Robert says.

At Mayo Clinic, Robert met pulmonologist Augustine Lee, M.D., in the Department of Pulmonary Medicine. Dr. Lee informed Robert that although a few medications were available to slow the progression of his condition, none of them could stop it. “Fifty years of clinical trials show that no drug seems to impact this disease,” Dr. Lee says.

“As I became more and more acute in my disease, Dr. Lee’s the one that finally said: ‘Bob you have to do this (lung transplant). This is your only way out.'”

Robert

Under
Dr. Lee’s care, Robert started taking one of the drugs approved for pulmonary
fibrosis. He also began a daily exercise program to maintain the lung function
he had.

“As
I progressed, I became fairly dependent on oxygen,” Robert says. “My
progression went slowly. It’s kind of like stairsteps. You go along for a
little while, and you’ve been steady. And all of the sudden you drop off a
cliff and go down a couple more notches.”

When
Robert reached the point that he required oxygen 24/7, he and Dr. Lee spoke in
earnest about lung transplantation. “As I became more and more acute in my
disease, Dr. Lee’s the one that finally said: ‘Bob you have to do this. This is
your only way out,'” Robert says.

Individualized
treatment

People
who need a lung transplant must first qualify to be placed on the organ transplant
waiting list. Factors such as diagnosis, symptom severity, underlying health
and age all are considered.

“A
lot of hospitals don’t even talk to you if you’re over 65,” Robert says. “I
was fairly negative about it, and I was going to let nature take its course. I
had maybe six months left — maybe. But Dr. Lee, he’s a terrific guy. He talked
me into speaking to the transplant department because Mayo looks at the whole
physiological makeup of the individual, and then they make a decision.”

“Sometimes we see a very healthy 70-year-old who’s a good candidate, and he’s proven that to be true.”

David Erasmus, M.B., Ch.B., M.D.

While the Mayo Clinic’s cutoff guideline for lung transplant patients is 70 years old, patients older than 70 are considered on a case-by-case basis, says transplant physician David Erasmus, M.B., Ch.B., M.D., with the Transplant Center.

“He
was a little older than the typical patient we would transplant, but he was in
good shape,” Dr. Erasmus says. “Sometimes we see a very healthy
70-year-old who’s a good candidate, and he’s proven that to be true.”

After
undergoing the extensive workup process to qualify to for the donation list,
Robert was accepted. “All of his other organs were good, and he had
maintained himself, despite the disease,” Dr. Lee says. “Staying as physically
fit as possible is hard to do when you have severely damages lungs. It takes a
lot of diligence to maintain the level of fitness he did even up to transplant.”

Once
on the list, Robert prepared for a long wait. Normally, patients can expect a
four- to six-month wait before their names come up. Although he feared his body
would not hold out until his name was called, that fear was short-lived. Less
than 48 hours after receiving his place on the list, Robert got a call that
lungs might be available for him.

“Lungs
are allocated according to a scoring system,” Dr. Erasmus says. “The
sicker the patient, the higher the score, and the higher the chance of being
transplanted. If you have the disease he has, it tends to give you a higher score
compared to some other diseases because it has a poor prognosis.”

Following Robert’s lung transplant operation, which was performed by cardiothoracic surgeon Ian Makey, M.D., in the Department of Thoracic Surgery, Robert spent two days in the ICU before moving to a recovery room. After an additional five nights in the hospital, he was discharged.

Although
Robert’s surgery was a success, and his new lungs worked properly, at first it
was difficult for him to accept that he could breathe independently.

“You
become so dependent on the oxygen, so I was afraid to get off if it,”
Robert says. “I kept asking, ‘How many liters am I on?’ And finally they
looked at me and said, ‘You haven’t been on oxygen for 24 hours, so get rid of
that crutch.’ The nurses there, the doctors, they’re good like that. They push
you.”

Purpose-driven

At
home, Robert slowly rebuilt his strength and stamina. Early on, one of the most
important components of his recovery was the care his wife, Susan, provided. “Fifty
percent of your recovery is what your caregiver can do,” Robert says. “They
take care of the medicine and everything, so all you need to do is concentrate
on your recovery. The job she did was miraculous, putting up with my ups and
downs.”

“Through all of this, he’s been the model patient. He’s done everything we’d ask of him. His heart was in it.”

Augustine Lee, M.D.

Nine months after transplant, Robert’s life had essentially returned to normal. Following his doctors’ directions was instrumental for his recovery. “When the doctors tell you something, you’d better listen, and what they tell you to do, you’d better do,” Robert says. “If they tell you to do your spirometry every day, do it. If they tell you to take your pills, you take your pills. If they tell you to work out 30 minutes every day, do it. You’re crazy if you don’t. This is a gift they’ve given you.”

Robert’s
compliance with his medical team’s instruction has been a huge factor in his
successful outcome. “Through all of this, he’s been the model patient,”
Dr. Lee says. “He’s done everything we’d ask of him. His heart was in it.”

Although Robert will never return to his pretransplant level of physical activity, he does many of the same things he was doing before: daily exercise, dinners out, hosting gatherings at his house. And every chance he gets, Robert talks about his illness and his transplantation journey in the hope of increasing awareness about the lifesaving gift of organ donation because, he says, “I’m blessed and I want to give back.”


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3 days ago · From Health Care Advisor to Transplant Patient to Mayo Clinic Employee

Piper Nieters Su had spent years in Washington, D.C., working with institutions like Mayo Clinic on health care policy reform. Piper’s relationship with Mayo Clinic changed dramatically, however, after she was diagnosed with a rare liver disease.




The
comments from her spouse were made out of love, but they were given when Piper
Nieters Su didn’t have time for them. “My husband made one or two passing
comments that my eyes looked yellow,” Piper says. “It was during the
holidays, so I didn’t really pay much attention to him. As we tend to do, I
just sort of ignored it.”

Then
in January 2017, Piper — a longtime Washington, D.C., lawyer and health care
policy advisor — was meeting with another lawyer when her husband’s remarks
were echoed by her colleague. “He’s also a physician and made a concerned
comment that I was starting to look jaundiced and that I might want to see
somebody about it,” Piper says.

After that, Piper scheduled an appointment with her primary care physician in Washington, D.C. “Following that appointment, they pretty quickly figured out I had primary sclerosing cholangitis, which is a fairly rare liver disease that, in my case, was progressing relatively quickly,” Piper says. “Most patients can have it for 10 or 20 years before it does much damage, but mine was moving more quickly.”

Waiting for a transplant

Primary sclerosing cholangitis is a disease
that affects bile ducts, which carry the digestive liquid bile from the liver
to the small intestine. The disease triggers inflammation that causes scarring
within the bile ducts. The scarring makes the ducts hard and narrow, and that
leads to liver damage. When liver damage is severe, a liver transplant may be
necessary.

Based
on the severity of her condition, Piper was placed on the transplant waiting
list. “I went through that process, and it took about two months to get
all of the testing done,” she says. “At the same time, while there’s
not a lot you can do treatment-wise for primary sclerosing cholangitis, my disease
was still progressing. So they decided to start putting stents in my bile ducts
to keep them open.”

Piper
had the stenting procedure done every six weeks for several months as her doctors
did their best to keep her disease at bay and buy her time while she waited for
her name to move up the transplant waiting list. But when the stent treatments
were no longer offering much help, Piper’s care team offered a new approach.

“The
disease just kept progressing, so my care team strongly encouraged me to start
pursuing waiting lists in other parts of the country because where I was, in the
Mid-Atlantic region, the demand for livers is great, and the supply is small,”
Piper says.

“While I, of course, knew the name and reputation, I didn’t fully understand why Mayo Clinic is so world-renowned.”

Piper Nieters Su

One of the places her team recommended was Mayo Clinic. And even though she’d never been there, Piper knew Mayo Clinic well. “I’d been in D.C. for about 20 years at that point, working on Capitol Hill and in the health care space, and Mayo Clinic was a client of mine,” she says. “While I, of course, knew the name and reputation, I didn’t fully understand why Mayo Clinic is so world-renowned.”

That changed when she arrived at Mayo Clinic’s Rochester campus. “Coming to Mayo was a night-and-day patient experience from the care and treatment I’d been receiving elsewhere,” she says. “Before I arrived, they had all of my appointments set up. What had previously taken me two months to get done elsewhere, I got done in four days. It was an entirely different experience for me.”

After she met with Charles Rosen, M.D., in the Mayo Clinic Transplant Center, and he told her he felt there was more he and his colleagues could do for her, Piper decided to transfer her care to Mayo Clinic.

“The
biggest difference in coming to Mayo Clinic for me was that it was the first
time in my entire experience of being sick that I felt like people truly cared
and understood what I was going through, knew exactly what they needed to do to
get me better, and knew exactly what was happening with my care at any given moment,”
she says. “There was this comfort that my husband and I felt when we came
to Mayo that we had not previously experienced. For us, that was a game-changer,
and so we decided pretty quickly that when the time came, we wanted my liver
transplant
to happen at Mayo Clinic.”

To move or not to move

To
make that happen, Piper and her family needed to sort through a host of logistics.
“As soon as we shifted into destination-patient mode, we started making
all the arrangements necessary, including figuring out a plan to allow us to
fly to Rochester on a dime whenever a new liver became available,” Piper
says. “That planning was complicated because our son was fully entrenched
in school and his friends. So we considered whether I’d just stay in Rochester
while I waited for a liver, or if we should pull our son out of school and move
our entire family to Rochester.”

As
Piper and her husband debated the pros and cons of that decision, a new
development surfaced that affected Piper, as well. The chair of Mayo Clinic’s
Division of Public Policy and Government Relations announced her retirement. Given
Piper’s past working relationship and experience with Mayo Clinic, she was
asked if she’d be willing to step in to help with some of that work until a
permanent replacement was found. Piper agreed. “Not only was my relationship
with Mayo as a patient becoming more frequent, so was my work with Mayo,” she
says.

Piper
says that question quickly led to another. “Long story short, I decided to
apply for the permanent Government Relations Division chair role right around
the same time I was trying to figure out all of the details of being a
destination patient at Mayo Clinic,” she says. “My husband and I just
felt like the universe was pointing us in the same direction in a lot of
different ways, so we took the plunge. Thankfully, I got the job. I moved to
Rochester in April 2017 and started doing weekly commutes back and forth to
D.C. while my son finished school.”

New liver, new life

Two
months into that arrangement, Piper’s health began to change. “In June, my
numbers started shifting significantly and got much worse,” she says. “My
doctors said, ‘You’ve gotten to the point where you can no longer travel. You
need to stay in Rochester now because you’re getting to the top of the
transplant list.'”

Piper’s
care team delivered that news on a Thursday, a day before Piper was set to
board her weekly flight back to Washington, D.C. She requested one last trip
home to help her husband pack. “But they said, ‘No, you’re sick enough
that we really don’t think you should go anywhere,'” Piper explains.

From
that point on, Piper wouldn’t set foot in her family’s home in Washington, D.C.
“That was really strange for me,” she says. “But I stayed in
Rochester while my husband and son packed up our house in D.C. We then sold our
house and moved all of our stuff to Rochester. I never went back to our home,
which, again, was strange but well worth it.”

One month later, and two days before her 40th birthday, Piper’s care team called to say they’d found a new liver for her. “I got to Mayo Clinic Hospital, Saint Marys Campus an hour or so later and did my pre-op work-up and went into surgery around 1 p.m. and was out, amazingly, by 5 p.m. that same day,” Piper says. “Everything went incredibly well. I spent one night in the intensive care unit and, believe it or not, was back home just five days later.”

“Being a patient at Mayo has been a life-changing and hugely meaningful experience for me. The chance to help make sure other people get that, too, is a fantastic reason for me to come to work every day.”

Piper Nieters Su

For
Piper and family, home is now Rochester, Minnesota. “Moving to Rochester
and working for Mayo Clinic full-time has been a big life change for us, in
addition to all of my medical changes,” Piper says. “We’re 100% happy
with the decision we’ve made because it’s allowed me to get through some pretty
big medical issues while living a relatively normal life.”

Through
her work for Mayo Clinic, now Piper is dedicated to making sure others have a
chance to lead that kind of life, too.

“I joke with people that you couldn’t find a more enthusiastic advocate than someone who can talk firsthand about the benefits of being a patient at Mayo Clinic,” she says. “Being a patient at Mayo has been a life-changing and hugely meaningful experience for me. The chance to help make sure other people get that, too, is a fantastic reason for me to come to work every day.”


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5 days ago · Autoimmune Disease No Handicap to Golfing Greatness

Billy Dowell Jr. was working toward a goal of playing professional golf when his body betrayed him. He was beset by several autoimmune disorders that left him overwhelmed. With consistent, comprehensive support from his Mayo Clinic Care team, however, not only has Billy gotten his conditions under control, he's successfully returned to golfing.

Billy Dowell Jr. was working toward a goal of playing professional golf when his body betrayed him. He was beset by several autoimmune disorders that left him overwhelmed. With consistent, comprehensive support from his Mayo Clinic Care team, however, not only has Billy gotten his conditions under control, he’s successfully returned to golfing.




It’s
a decade later than he’d hoped, but Billy Dowell Jr. is finally on par to chase
his dream of playing professional golf.

Billy,
who lives in Winter Park, Florida, learned to golf when he was just 4. He
played his first tournament when he was 9. He golfed competitively throughout
high school and college, and as a graduate student, he aspired to begin amateur
and professional circuits. However, at the age of 27, a severe case of ulcerative
colitis
interrupted his plan.

Billy previously had been diagnosed with sacroiliitis, a condition in which one or both of the body’s pelvic, sacroiliac joints becomes inflamed. But prior to graduate school, he’d never experienced gastrointestinal issues. When the colitis hit him in 2003, the condition destroyed his colon, and it had to be surgically removed. As a result, Billy was given an ileostomy and an external bag to collect solid waste.

Knocked
off his life’s course, Billy and his wife, Meredith, who had recently wed,
moved to her hometown of Winter Park to try and carve a way forward. In
Florida, Billy sought medical attention for his condition.

“We were in Florida and thought: ‘Where do we go? What do we do?’ I contacted Mayo Clinic, and Dr. John Cangemi was in agreement to see me,” Billy says. “We don’t have enough time for me to describe what Dr. John Cangemi has done to restore my life. Until you really lose your health, you never know what you have.”

John Cangemi, M.D., in Gastroenterology and Hepatology, who has managed Billy’s care for the past 15 years, refers to himself as the quarterback of Billy’s interdisciplinary medical team. Through his years of care at Mayo, Billy’s received additional diagnoses of other autoimmune conditions, including Crohn’s disease and ankylosing spondylitis. More importantly, however, he’s received integrated, holistic care that allowed him to chase his dream.

“It’s
taken me a long time,” Billy says. “But I’m someone filled with much
optimism and hope, and surrounding myself with the best people is part of my
journey. I have been beyond blessed to have Mayo Clinic. I’m 44, and I still
have my eyes on playing the PGA Senior Champions Tour.”

A different strategy

There
was a time when Billy all but gave up his dream of golfing professionally.
“When my colon perforated, and I was in the ICU, and I woke up with an
ileostomy bag, those were such very trying and challenging days,” Billy
says. “My ambition was to play professional golf someday, and at that
point we didn’t know if I’d ever be able to play golf again.”

Arriving in Jacksonville at Mayo Clinic’s Florida’s campus and meeting Dr. Cangemi offered Billy a glimpse of a different fate. “When I started learning more about what was going on, I really developed an understanding that knowledge is power,” Billy says. “The more you know about what you have helps you emotionally. That enabled me to start a transition of gaining some hope because I had confidence in my doctors.”

“The idea of doing an internal pouch to prevent him from having to wear one on the outside was really a game changer for his life and his career.”

John Cangemi, M.D.

At Billy’s first appointment, Dr. Cangemi informed him about a surgical procedure known as ileoanal anastomosis that would create a new internal system for eliminating solid waste from his body. J-pouch surgery, offered at Mayo Clinic for approximately 40 years, creates a holding pouch for stool and allows patients to process waste more normally.

“The
idea of doing an internal pouch to prevent him from having to wear one on the
outside was really a game changer for his life and his career,” Dr.
Cangemi says. “To have an internal pouch and have total control of the
pouch is an incredible treatment advance.”

During
Billy’s procedure, which was performed in April 2004 by Mayo Clinic emeritus
colorectal surgeon Philip Metzger, M.D., the lower portion of his small intestine,
called the ileum, was made into a j-shaped pouch and attached to the end of the
rectum. During the surgery, Billy’s sphincter muscles were preserved, allowing
him muscular control to hold in and release waste.

Because
the J-pouch is smaller than the colon and holds less waste, Billy now needs to use
the restroom more frequently than most people. But he’s taken that in stride
and learned to plan his meals and mealtimes to better align with bathroom
breaks.

“Quite
often, people are complimentary of my golf swing, and I think to myself, ‘You
only know the half of it,'” Billy says. “Teeing off and playing a
round of golf — and having the confidence of controlling going to the bathroom
— that took a lot of diligence and work to manage.”

Multiple conditions, one medication

Billy’s
return to the greens wasn’t immediate after his J-pouch operation. Over the
years, he’d gained a significant amount of weight, which hampered his playing
ability. Moreover, Billy was confronted by a continuing stream of setbacks
linked to his malfunctioning immune system.

His ulcerative colitis was rediagnosed as Crohn’s disease. He developed an eye inflammation in his left eye known as uveitis, which led to glaucoma. As a result of the pressure caused by the glaucoma, surgeons from Mayo’s Department of Ophthalmology implanted an Ahmed glaucoma valve to release the pressure and restore his vision. Billy also developed lower back pain and was diagnosed ankylosing spondylitis, an inflammatory condition that can cause vertebrae in the spine to fuse.

This cascade of conditions isn’t unusual
for someone in Billy’s situation, as it’s common for a patient with one autoimmune
disease to develop others. “It’s just a disorder of the immune system as
the central defect, which has many different expressions,” Dr. Cangemi
says.

Another member of Billy’s care team, Ronald Butendieck Jr., M.D., a Mayo Clinic rheumatologist, explains
that, in Billy’s case, the inflammatory conditions are under the disease
umbrella of spondyloarthropathies. “It affects him
systemically,” Dr. Butendieck says. “The goal of treatment is to find
a medication that would address each and every one of those particular
manifestations.”

“I say I’m in my second golfing life, which is a blessing.”

Billy Dowell Jr.

In July 2011, Billy’s team prescribed him a
biologic treatment known as Humira. Taken twice-monthly via injections, Humira acts like an
antibody and targets the molecule that promotes the inflammatory process. “Humira
in the bloodstream seeks out the molecule, attaches to it and deactivates it,”
Dr. Cangemi says.

With the medication keeping his symptoms in
check, Billy’s golfing dreams re-emerged. “In 2014, after
10 years of not competing in golf, I started back hitting again,” Billy
says.

Billy
signed up for an amateur golf tournament to be held in spring 2015 and began to
train for the event. One day, while out with a friend hitting balls, his friend
provided Billy, who at the time weighed about 280 pounds, a reality check.

“He
told me that I was going to get laughed off the tee box with my weight,”
Billy says. That prompted a change. With the help of a nutritionist and a
strength trainer, Billy modified his diet and began to exercise. He lost nearly
100 pounds, ultimately returning to his college weight.

“And
May 1st, 2015, I played my first tournament,” Billy says. “I
think Dr. Cangemi knew all along that golf was very pertinent to my life. Year
after year of trying to get that right, I think he knew that eventually it
would settle down, and it did. I say I’m in my second golfing life, which is a blessing.”

Integrated team, ideal care

In
addition to using Humira to treat his condition, Billy’s care team can see that
the thoughtfulness and dedication he applies to his fitness has had a
significant impact on controlling his disease.

“He
clearly has a passion for what he’s doing. There is no doubt about it,”
Dr. Butendieck says. “For individuals who are self-motivated and keep
working at it, that can be hugely beneficial. Staying healthy, eating right,
doing the right exercises and stretches — it benefits him immensely. He is
doing fantastic.”

“Dealing with everything I’m dealing with and having the assurance from (my care team) that they’re right there for me is unbelievable.”

Billy Dowell Jr.

While
self-care and a deepened understanding of his physiology have propelled Billy
toward his dream, he says developing that understanding and implementing those self-care
practices would have been impossible without his Mayo Clinic team.

“Quite
often, I try to help others with inflammatory bowel disease, and frequently
make the point that your health care team, your team of physicians and the
network working together are so vital in dealing with autoimmune disease,”
Billy says. “I live near Orlando, and people there all the time say, ‘You
drive all the way to Jacksonville?’ and I say, ‘You better believe it.’ There’s
no questioning that. Dealing
with everything I’m dealing with and having the assurance from them that they’re
right there for me is unbelievable.”

As a person with a complex medical
condition that requires input from multiple specialties, being a Mayo Clinic
patient puts Billy in an excellent position to receive all the care he needs in
one place.

“Billy’s a classic example of how
the integrated health care system here works effectively,” Dr. Cangemi
says. “The beauty of it is we’re all connected. From my central role as
quarterback, he has access to the specialists, which are all under one roof on
one record. And there’s probably no other institution in the world that can do
that.”


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Fri, Jul 12 5:00am · Careful Evaluation, Teamwork Lead to Successful Epilepsy Surgery

There was a time when Gavin Vreeland was afraid he might hurt his daughter should he have a seizure while caring for her. Despite taking medication, his epileptic episodes happened frequently and without warning. But after specialized imaging and targeted brain surgery at Mayo Clinic, Gavin is now happily embracing his little one seizure-free.
Kristy, Declyn and Gavin Vreeland

There was a time when Gavin Vreeland was afraid he might hurt his daughter should he have a seizure while caring for her. Despite taking medication, his epileptic episodes happened frequently and without warning. But after specialized imaging and targeted brain surgery at Mayo Clinic, Gavin is now happily embracing his little one seizure-free.




Gavin
Vreeland was fed up. For more than 11 years, the resident of Kahoka, Missouri, lived
with alarming seizures that stopped him in his tracks. The seizures caused his
lips to smack, his eyes to glaze over and his hands to tighten their grip. More
often than not, he’d black out.

Numerous physicians agreed Gavin’s seizures were epileptic, but the source of the abnormal activity remained a mystery despite multiple MRI scans of his brain. Gavin took dozens of pills a day to control the episodes, but the seizures continued.

Not
only was Gavin frustrated by the lack of improvement in his seizure activity, so
was his hometown neurologist. “We were tired of trying a bunch of
medications, and he finally said: ‘Let’s change things. I’m going to recommend
you to Mayo Clinic,'”
Gavin says.

In February 2018, Gavin met neurologist Jeffrey Britton, M.D., at Mayo Clinic’s Rochester campus. Dr. Britton recommended Gavin undergo a specialized MRI scan to learn more about his condition. Gavin’s care team used the MRI images to identify a defect in his brain, known as a temporal lobe encephalocele, as the cause of the seizures. A month later, Gavin underwent brain surgery during which Mayo Clinic neurosurgeon Jamie Van Gompel, M.D., removed the encephalocele.

Now
more than a year later, Gavin hasn’t had any seizures since his operation. He’s
reduced his medications. He’s back to work and happy to be living life without worrying
about being hit by a seizure.

“My
life has changed by my stress level going down quite a bit just knowing I am
going to be able to wake up, and I can decrease my medications, and I finally
don’t have to deal with seizures anymore,” Gavin says.

Disruptive disorder

Gavin’s
first seizure occurred when he was a 22-year-old college student. When it
struck, the seizure hit hard, Gavin says. “I sat down in a recliner and
started watching TV, and the next thing I knew, I was waking up in the back of
an ambulance going to the hospital.”

That grand mal seizure resulted in Gavin being diagnosed with epilepsy and prescribed an antiseizure medication. As the years passed and Gavin continued to experience seizures, he tried a number of new medications. Although a new drug would stop the seizures for a time, they always came back.

“I’d
go maybe two to three weeks and then, bam, I’d have a small episode,”
Gavin says. “It would last maybe 10 to 15 seconds, and I’d have two to
three episodes right after that.”

“I never had any warning signs that I was about to take a roller coaster.”

Gavin Vreeland

During
his seizures, Gavin would stare blankly into “la-la land,” he says. “I’d
smack my lips and saliva would come out of the side of my mouth. I’d start twirling
my hands. My grip would tighten. One time I had a full soda can in my hand and
began to have an episode, and I literally crushed the soda can with my hand.”

The
events were unpredictable. Once, a seizure stuck while Gavin was working in a
restaurant. He passed out, hit his head and required several stitches. “I
never had any warning signs that I was about to take a roller coaster,” he
recalls.

As
is the case with 1 out of 3 people in the U.S. with epilepsy, Gavin had what’s
known as drug-resistant epilepsy, Dr. Britton says. “Despite medication
therapy, they continue to have seizures.”

In
some cases, surgery may be an option to treat this form of epilepsy but not
always. “When we see people with drug-resistant epilepsy, not all of them
are able to be operated on for their epilepsy,” Dr. Britton says. “For
surgery to be an option, first there needs to be one source.”

If
a single source or location within the brain can identified as the cause of
seizures, the next factor to consider for surgery is whether that part of the
brain can be safely removed.

In
Gavin’s case, the fact that his seizures were consistently similar to one
another increased the likelihood that they were coming from one source. That
made surgery a possibility, but he’d need careful evaluation before his team
could move forward.

Answers at last

Because
the source of Gavin’s seizures was unknown when he and his wife, Kristy, arrived
at Mayo Clinic, his care team decided to take a more detailed look using specialized
imaging. Gavin underwent an epilepsy protocol MRI, so his care team could look
at his brain’s temporal lobe using particular sequences that can help identify
encephaloceles.

The first specialist to read Gavin’s scans was neuroradiologist Carrie Carr, M.D., in the Department of Radiology. Dr. Carr saw what she thought looked like an encephalocele, and she shared that finding with the neuroradiology team. The MRI was followed by a high-resolution CT scan that evaluated the skull base for abnormal holes. That test also showed the presence of an encephalocele, which was confirmed by radiologist Greta Liebo, M.D.

“Encephaloceles result from defects at the base of the skull,” says Robert Watson Jr., M.D., Ph.D., chair of the Division of Neuroradiology. “Essentially, little holes in the bone permit the adjacent brain to protrude through it, stretching and irritating the tissue, and that can set off epileptic seizures.”

It’s
only been within the past few years that the medical community has recognized
encephaloceles can cause seizures, Dr. Watson says, adding that at Mayo Clinic,
Dr. Van Gompel has been a leader in recognizing the importance of carefully
evaluating MRIs and CTs for these subtle findings. “As a result, we’ve
come up with specialized sequences in MRI to be more sensitive to find
these,” Dr. Watson says. “And we’ve developed a detailed CT protocol
to get very fine cuts of the skull base to identify them.”

“The beauty of the surgical epilepsy conference is that we all get together in a room — the neurologist, the neurosurgeon and the neuroradiologist — and we discuss these challenging patients to make a decision about whether surgery will help their epilepsy.”

Robert Watson Jr., M.D., Ph.D.

In
addition to Drs. Carr, Liebo and Watson reviewing Gavin’s imaging, five other Mayo
neuroradiologists looked at the scans and provided input before Dr. Watson
presented Gavin’s case at a Mayo Clinic surgical conference in March 2018.

“The
beauty of the surgical epilepsy conference is that we all get together in a
room — the neurologist, the neurosurgeon and the neuroradiologist — and we
discuss these challenging patients to make a decision about whether surgery will
help their epilepsy,” Dr. Watson says. “In the conference, we
correlate the imaging findings and EEG
to try to identify the seizure focus and decide whether surgery is possible.”

Along
with the sequenced MRI and CT scan, Gavin received an extended EEG to better
measure the encephalocele’s location in his brain. To conduct the test, Gavin
was hospitalized and electrodes were attached to his skull. His medications
were decreased slowly. As he was weaned off antiseizure drugs, his team waited
for him to have a seizure. It took 12 days.

Unlike
most of his seizures, when that one hit, it was a welcome relief. “I only
remember slowly coming to,” Gavin says of waking up after the seizure in
the hospital. “I reached above me, and I didn’t feel the wires. I looked
at Kristy and asked if they finally got something, and she said, ‘Oh yeah.’ I
could see it happened by the look in my wife’s eyes.”

Precision surgery

Based
on the findings from his evaluation, Gavin’s care team recommended surgery. In
mid-March 2018, Gavin underwent the operation to remove the encephalocele. Because
Gavin’s lesion was in his left temporal lobe, surgery to remove the tissue
presented a risk of affecting his memory and speech, among other issues, Dr.
Van Gompel says.

“‘If
we were to take the same approach to epilepsy surgery on the left side as we do
on the right side and take out the same amount of tissue, that has been known
to cause a lot of problems with verbal memory and other issues. Some patients
are really devastated by that procedure,” Dr. Van Gompel says. “It
makes the left side very difficult to treat. We look at the left side a lot
differently than the right side.”

In
Gavin’s case, Dr. Van Gompel focused his attention on the encephalocele and took
out as little tissue as possible. “We did the most limited surgery first
to see if it was successful and if not, plan B was to do a full temporal
lobectomy,” Dr. Britton says.

During
the approximately three-hour procedure, Dr. Van Gompel took out the encephalocele
as well as neighboring brain tissue. In place of the brain tissue he removed,
Dr. Van Gompel placed a small piece of fat taken from Gavin’s belly.

Finally seizure-free

Gavin
remained in the hospital for nearly a week after surgery. Then, several weeks later,
he returned to his local neurologist and, under his care, slowly began
decreasing his medications one pill at a time.

“It’s
amazing when you go down from 30 pills to eight,” Gavin says. “I don’t
know if there’s a chance that I’ll be off medications one day, but there’s a
shot. But if not, I’ve hit a big goal that I’m appreciative of.”

“Gavin’s passed a year threshold, which is a nice milestone, and I think things are looking very favorable.”

Jeffrey Britton, M.D.

Because
there is no way to predict how patients will do after brain surgery, each
patient’s treatment following the procedure is different. “There are a
number of factors that go into a decision about whether you attempt to stop the
medication or not,” Dr. Britton says. “Some people do well for a
while, and then start to break through. Usually if they make it past a year
without a seizure, the chances of relapsing are quite a bit less. Gavin’s
passed a year threshold, which is a nice milestone, and I think things are
looking very favorable.”

Gavin
says the last seizure he experienced was the one during his February 2018
hospitalization. “My wife still gets kind of nervous if she hears
something drop in the house or, by some chance, she hears me smacking my
lips,” Gavin says. “But since surgery, I’ve not had one episode, and
God willing, let’s keep that going.”


HELPFUL LINKS

Wed, Jul 10 5:00am · Scoliosis Surgery Preserves Teen's Mobility, Boosts Self-Esteem

As an active teenager, Mason Orth struggled with the back brace she had to wear to correct her scoliosis. And she was hesitant to move forward with the other treatment option presented to her, spinal fusion. But a consult at Mayo Clinic revealed another option — one that has yielded dramatic results.

As an active teenager, Mason Orth struggled with the back brace she had to wear to correct her scoliosis. And she was hesitant to move forward with the other treatment option presented to her, spinal fusion. But a consult at Mayo Clinic revealed another option — one that has yielded dramatic results.




To
17-year-old Mason Orth, movement and flexibility are everything. She’s an
accomplished high school cheerleader and has enjoyed participating in a baton-twirling
troupe.

Not
long ago, however, it was unclear if Mason would be able to continue her involvement
in those kinds of activities that required her to bend and twist. That’s
because Mason was diagnosed with scoliosis, a sideways curvature of the spine.
The condition was causing her pain, and the back brace she wore to correct it was
cumbersome and undermined her self-esteem. But the other standard treatment
option for scoliosis, spinal fusion, would make it almost impossible for her to
maintain her flexibility.

In
search of other options, Mason and her mother, Stephanie, went to Mayo Clinic.
There, orthopedic surgeon Todd Milbrandt, M.D., provided an attractive
alternative — a procedure called anterior vertebral body tethering that could
correct the scoliosis while preserving Mason’s flexibility and ease of
movement. The surgery was being offered for adolescent scoliosis patients as
part of a clinical trial at Mayo Clinic’s Rochester campus.

“These
kids go back to everything, including sports, in just three months, and they
don’t wear a brace,” Dr. Milbrandt says. “This attracts patients who
want more flexibility than a spinal fusion will allow.”

It
was exactly the solution Mason needed.

Crumbling
confidence

Mason
learned she had scoliosis when she was 9. A condition
seven times more common in girls than boys, many cases of scoliosis are mild
and don’t require treatment. But by the time she was 13, Mason’s condition had
worsened to the point where she had a 40-degree curvature of the spine. At that
point, a doctor in Omaha, Nebraska, not far from where she lives, recommended
Mason wear a back brace to treat the condition. But the brace was
uncomfortable, and it made her shoulders uneven.

“I
wasn’t confident in myself, and the brace made it worse. It hurt my sides and
was very painful,” Mason says. “It made my right shoulder pop up 2
inches higher than my left shoulder. I hated it.”

In
addition to the physical discomfort, Mason was getting teased at school, which
was hard on her emotionally. At that point, Mason and her mom decided that she would
only wear the brace at night.

“My last three vertebrae are the only part of my spine that’s not fused, so I can’t do a backbend. I didn’t want that for Mason, who’s so physically active.”

Stephanie Orth

For
Stephanie, her daughter’s experience brought back unpleasant memories of her
own treatment for scoliosis when she was a teenager. “After I had back
fusion surgery, I had to wear a full-body cast for nine months,” Stephanie
says. “My last three vertebrae are the only part of my spine that’s not
fused, so I can’t do a backbend. I didn’t want that for Mason, who’s so
physically active.”

Despite
her scoliosis, Mason was physically able to do the jumps and other gymnastic
movements that cheerleading involves. But she complained of pressure in her
lower back and had to manage the pain with medication. She knew she needed to
do something, but feared what spinal fusion would mean for her. According to
Dr. Milbrandt, her concern was well-founded.

“While
spinal fusion surgery takes a crooked spine and makes it permanently straight
by fusing the vertebrae together, the downside is that you lose movement, which
is so important for Mason who needs to bend and twist,” he says.

Innovative approach

During
a consultation at Mayo Clinic in October 2016, Dr. Milbrandt told Mason and
Stephanie about anterior vertebral body tethering, or VBT.

“We’re
one of a few centers around the country that offer it,” Dr. Milbrandt
says. “Using cameras inside the chest, we insert screws into the vertebrae
affected by scoliosis. Then we attach a flexible tether to each of the screws
and pull it to create asymmetrical pressure on those vertebrae. This leads to a gradual curve
correction while the patient grows.”

Candidates
for this procedure are adolescents who have spinal curvature of more than 40
degrees and still have growth remaining. Mason fit the bill.

“In
teens who have a curve the size of Mason’s, the curvature will increase by 1 or
2 degrees each year,” Dr. Milbrandt says. “People with big curves
into adulthood have increased pain and difficulty with arthritis in the spine.”

Mason
and Stephanie both were pleased by what Dr. Milbrandt told them. “He drew
diagrams that helped to walk me through the surgery, and made me feel
reassured,” Mason says. “He was very patient and very nice.”

“By
undergoing the VBT procedure, Mason would be able to bend and twist and do all
the things I’m unable to do,” Stephanie adds.

In
addition to the way it would limit her mobility, there also had been concern
about the long-term effects spinal fusion could have on Mason. “Over time,
fusion creates one big, unmovable segment over several moving segments of the
spine, which may lead to increased wear on the remaining nonfused sections,”
Dr. Milbrandt says.

That drawback isn’t associated with vertebral body tethering. So not only would it allow Mason to meet the physical demands of cheerleading, it also would help protect the joints in her back.

Unlimited potential

Mason had the surgery on Jan. 17, 2017. Joining Dr. Milbrandt in performing the procedure was orthopedic surgeon A. Noelle Larson, M.D., and general surgeon Dean Potter Jr., M.D.

Afterward,
Mason’s mom noticed a difference in her daughter’s back right away. “She
was in the ICU for the standard 24 hours, and Dr. Milbrandt and the nurses had her
sit up a few hours after surgery,” Stephanie says.”That’s when I noticed her back was aligned and straight, and
her shoulders were level. It was amazing.”

“I’m more confident, and my surgery played a major role in that.”

Mason Orth

Mason
was able to leave the hospital after four days — a much shorter stay than if
she’d had fusion surgery. She is one of about 40 patients at Mayo Clinic who’ve
undergone the procedure so far.  “I
loved the people at Mayo. It’s my favorite hospital,” she says. “The
nurses were amazing, and any doctors that came in to visit were wonderful.”

Not
long after she recovered, Mason looked in the mirror and was thrilled with what
she saw. “I wasn’t diagonal anymore. My shoulders were level, and my body
looked how it was supposed to look. And that made me happy,” she says. “I’m
more confident, and my surgery played a major role in that.”

That’s
just what Stephanie had hoped for. “I’ve been limited in the things I can
do with my kids, due to my fusion surgery. As a parent, you always want your
kids to have better things than you,” she says. “We are just so
thankful we got to meet Dr. Milbrandt. He changed Mason’s life for the better.”

Note: More information is
available online about the
vertebral body
tethering clinical trial
. If you have questions about
this clinical trial, you can email the Mayo Clinic team at
scoliosis@mayo.edu.


HELPFUL LINKS

Mon, Jul 8 11:37am · Second Opinion Leads to Less-Invasive Treatment for Esophageal Cancer

When Mike DiGennaro was diagnosed with stage 1 esophageal cancer, he wanted a minimally invasive treatment option. He found that, and more, at Mayo Clinic.
Sue and Mike DiGennaro

When Mike DiGennaro was diagnosed with stage 1 esophageal cancer, he wanted a minimally invasive treatment option. He found that, and more, at Mayo Clinic.




Mike DiGennaro knew he needed surgery. But he thought he would have a procedure to correct an umbilical hernia, and that would be the end of it. After the surgery and recovery, however, Mike’s surgeon revisited Mike’s medical history and suggested some additional procedures.

“I have a history of acid reflux, so he said I was probably due for an endoscopy and maybe a colonoscopy, too,” Mike says. “But I joked around with him and said: ‘You’re just looking to make more money! I’m as healthy as a horse!'”

After
a month of additional prodding by his doctors and his wife, Sue, Mike relented,
agreeing to go in for what he assumed would be routine examinations. They weren’t.

“The endoscopy is when they found the cancer,” he says. “They did a biopsy, and I honestly didn’t understand the seriousness of it until I started doing my own research and discovered esophageal cancer isn’t a very good thing to have.”

Following the diagnosis, Mike had his cancer staged. “They determined it to be stage 1,” Mike says. “After staging, they did a PET (positron emission tomography) scan that, thankfully, didn’t find additional cancer throughout my body.”

With the cancer contained to his esophagus, Mike’s care team in Wisconsin was swift and direct in their proposed treatment plan. “They said: ‘We need to get an esophagectomy done right away. We’ll cure you. You have to do it,'” Mike says. “And I said, ‘OK, but let me do some of my own research first.'”

Mike
was concerned about the extent of the surgery. He was told the esophagectomy —
a procedure that would involve removing part, or possibly all, of his esophagus
— required a prolonged hospital stay. “I really didn’t want to go through
all of that if I didn’t have to,” he says.

Mike began researching other treatments. That’s when he discovered a less-invasive surgery for esophageal cancer was being done at Mayo Clinic called gastrointestinal endoscopic mucosal resection. Mike took that information back to his care team.

“I
asked them what they thought and whether they could do this less-invasive
procedure,” Mike says. “They said they could. But they didn’t
recommend it because they didn’t think I’d be a candidate for it. That’s when I
came to Mayo Clinic.”

Another opinion, a
better option

At Mayo, Mike was introduced to Prasad Iyer, M.D., a gastroenterologist, and Kristyn Maixner, a nurse practitioner, in the Department of Gastroenterology and Hepatology. Mike says the two were open and honest about his cancer, and what they could do to treat it.

“The
way Kristyn and Dr. Iyer explained it to me, they said my esophagus is like a
wall. You’ve got your paint, your primer, and then you get into the drywall and
then the studs,” Mike says. “At stage 1, they explained my cancer was
lying just below the paint and hadn’t yet gotten into the drywall or studs
(lymph nodes) yet. Explaining my cancer to me like that not only made it
educational, but also relevant for me.”

With
the location and severity of his cancer understood, the next step was to
determine whether Mike was indeed a candidate for the less-invasive endoscopic
mucosal resection of his cancer. The team reviewed Mike’s positron emission
tomography scans, tissue samples and the ultrasound he had done when the cancer
was staged.

“They
said, ‘We’re not making you any promises, but it’s worth another look,'”
Mike says. “Sure enough, after that second look, they thought I was a
candidate for the endoscopic route versus the full esophagectomy. They were
very confident in their decision.”

“Our goal is to preserve the esophagus and preserve our patients’ quality of life.”

Prasad Iyer, M.D.

That
confidence, Dr. Iyer says, stemmed not only from the early stage of Mike’s
cancer, but also the approximately 15 years of experience he and other surgeons
at Mayo Clinic have in performing less-invasive endoscopic resections for
esophageal cancer patients.

“It allows us to remove chunks of cancerous tissue via the endoscope using a new technique called endoscopic submucosal dissection,” Dr. Iyer says “We’ve actually come to learn that if we take out these early cancers in this manner and treat the remaining precancerous esophagus lining (Barrett’s esophagus) with ablation, our results are every bit as good as those you’d expect from traditional esophageal cancer surgery.”

While
less invasive than an esophagectomy, Dr. Iyer says there’s a trade-off to
endoscopic resections. “We bring them back every three months, so we can
work on removing their cancerous and precancerous tissue step by step,” he
says. “Our goal is to preserve the esophagus and preserve our patients’
quality of life.”

A rewarding result

For
Mike, that meant five endoscopic mucosal resections spread three months apart. “We
started by taking out what appeared to be the worst-looking area,” Dr.
Iyer says of Mike’s cancer. “He came back three months later, and we took
out some more, and then we just kept going until it was all gone.”

Mike,
however, says he only needed one procedure to realize he’d made the right
decision. “The first one was kind of long, and I ended up having to spend
the night in the hospital,” he says. “But here’s the funny part: I
wasn’t in much pain. I was mostly knocked out from the anesthesia.”

The
same was true for Mike’s remaining four procedures. “The only thing I have
to complain about at all is they had to stretch my esophagus a little,”
Mike says. “Other than that, every procedure went like clockwork. I’m now cancer-free,
and I still have my esophagus.”

“Thanks to Dr. Iyer’s willingness to explore other options, I was able to get the same results in a much less invasive way.”

Mike DiGennaro

Mike
understands that outcome wasn’t guaranteed upon his arrival at Mayo Clinic. “Maybe
we would have had to have done the full esophagectomy at Mayo, too. But thanks
to Dr. Iyer’s willingness to explore other options, I was able to get the same
results in a much less invasive way,” Mike says. “It was a true team
effort with my wife, Sue, also playing an integral part in my care by helping
to validate research and supporting me in every decision.”

For
the careful evaluation and comprehensive care he received, Mike will be forever
grateful. “I feel good, and my quality of life is good,” he says. “I
feel really lucky to have found Kristyn and Dr. Iyer. They’re the golden nuggets
in all of this. They’re just awesome. My entire care team at Mayo Clinic is
awesome.”


HELPFUL LINKS

Wed, Jul 3 5:00am · Interpreting Languages, Connecting Cultures

In her work a medical interpreter in Mayo Clinic's Language Services, Samira Jubran uses her love of serving others to connect patients and health care providers, while building bridges between cultures.
Samira Jubran, center, with Ersida Buraniqi, M.D., and Vilmarie Rodriguez, M.D.

In her work as a medical interpreter in Mayo Clinic’s Language Services, Samira Jubran uses her love of serving others to connect patients and health care providers, while building bridges between cultures.




Editor’s
note: When Samira Jubran, a medical interpreter in Language Services at Mayo
Clinic, was growing up in Palestine, she didn’t envision being an interpreter.
But life took her in a new direction after she came to the U.S. to study
biomedical engineering. Here she shares the story of how her career and her passion
for interpreting languages and bridging cultures were born from her desire to
fight bias and prejudice.


By Samira Jubran

Being
an interpreter was not what I wanted to be in third grade, or even as a
teenager in high school. I actually wanted to be a singer and a dancer. I had a
hard time deciding on a college major. I loved too many subjects. In the Arabic
education system, there are two tracks you can choose from in ninth grade:
science, technology, engineering and math (STEM), or humanities. I chose STEM,
with a focus on math and science.

I was born in Jerusalem and lived in Ramallah. We had an olive tree, a big walnut tree and a lemon tree in our backyard where I have many childhood memories of playing. I used to rub the leaves of the lemon tree on the way to school. I ate falafel and hummus every Friday with fresh baked sesame ka’ak (Palestinian sesame bread).

“I’ve always loved the connection between the brain and the heart.”

Samira Jubran

I
was the eldest child born to Palestinian parents who supported higher
education. On my high school graduation from the Friends Quaker School in
Ramallah, I headed to the U.S. to major in clinical biomedical engineering. I’ve
always loved the connection between the brain and the heart.

Life
takes you places. I met my husband while attending Case Western Reserve in
Cleveland. We both loved working with Arab American youth, instilling a sense
of identity and culture. From Cleveland, we went to Chicago, where my oldest
daughter was born, and then to Germantown, Tennessee — a suburb of Memphis,
where my husband and I worked in dialysis.

With the birth of my twins, and with four kids under four years old, we decided to go back to Palestine, needing family support. But when violence intensified from the second Palestinian Intifada (uprising), which began in September 2000, we were forced to escape back to Tennessee. We weren’t able to protect our own children from the daily attacks and from fear. We learned to be courageous in the face of adversity.

Growing
up as Palestinian, I learned to be forgiving and accepting of others. I also
learned that education is the only thing that cannot be taken away from you. As
Nelson Mandela says, “Education is the most powerful weapon which you can
use to change the world.”

“Education is the solution for empowerment.”

Samira Jubran

We
returned to Tennessee the summer before 9/11. I returned to working as a
part-time interpreter throughout the community. More importantly, I started
volunteering at the Germantown schools through a cultural arts program to fight
bias and prejudice. All this was because my youngest daughter, feeling
discriminated against, asked me this question: “Mommy, why am I brown?”

This
question from my 5-year-old with black, curly hair was the drive for me to
become the interculturalist interpreter that I am today. Education is the
solution for empowerment. I graduated with a Master of Arts in intercultural
studies with an emphasis in education the same year my twins graduated high school.
My mission was to spread global inclusion for all humanity.

I have always been an outlier — a hybrid of two cultures — easily flowing from one to another. When my daughter started her medical school career, an opportunity to be an interpreter became available at Mayo Clinic. Driven by my passion — my love to serve people and using communication skills I gained from over 20 years as an interpreter — I was delighted to take advantage of this opportunity.

Working
as an interpreter at Mayo Clinic has allowed me to expand my cultural
curiosity, training and knowledge into research, translate my education into
practice, and further develop my intercultural career.

“I am inspired by the need to close health care gaps for our Arabic patients and to build intercultural agility, all while spreading joy.”

Samira Jubran

Mayo’s
collaborative culture fuels my approach to interpreting language and culture. I’m
able to interconnect cultures, connect Arabic patients with our providers and
health care staff, and to value cultures seriously. I was fascinated by the
vast numbers of Arabic patients who come to Mayo Clinic. With my Arab American
cultural legacy, my schooling and my experience, I know I can open the door to
everyday experiences for patients and staff at Mayo. I’m at the right place at
the right time.

The Language Department offered the support for me to share this passion. As an interpreter, I’m at the front line, being part of patients’ stories. My department has allowed me to pursue intercultural boot camps. By offering health care and cultural concepts, tools and common ground relations when working with Arabic patients, I help staff to get into the linguistic and cultural rhythm of their patients. I’m grateful to have received the 2018 Mayo Diversity Champion Award for my work.

I
am inspired by the need to close health care gaps for our Arabic patients and
to build intercultural agility, all while spreading joy. We have a great
culture where the needs of the patient come first. This is an opportunity where
I can grow with Mayo’s global culture and work within a passion I enjoy. I am
so grateful. I cannot wait to see where life at Mayo is going to take me next.


HELPFUL LINKS

Mon, Jul 1 5:00am · When Faced With Complex Heart Surgery, Physician Picks Mayo Clinic

When he learned that he needed heart surgery, Andrew Ross, M.D., knew that in order to take care of his patients, he had to take care of himself. To do that, he turned to Mayo Clinic.

When he learned that he needed heart surgery, Andrew Ross, M.D., knew that in order to take care of his patients, he had to take care of himself. To do that, he turned to Mayo Clinic.




Last
year, Andrew Ross, M.D., a 44-year-old gastroenterologist who was accustomed to
his role as a health care provider, became Andy, the patient, following news
that an existing heart condition had worsened.

Andy knew he had a heart murmur and mitral valve prolapse — a structural issue in the left side of the heart that affects blood flow. In most people, the condition isn’t life-threatening and doesn’t require treatment or changes in lifestyle.

In 2018, Andy realized it had been a while since he had been to the doctor. He felt fine as he managed a busy career, an active lifestyle and a bustling family schedule with his wife, Andrea, and daughters, Jordan and Marley. But he went to see his primary physician, who ordered an echocardiogram — a test that uses sound waves to produce images of the heart.

“The
week before I had my test, I joked with the cardiologist, ‘I’m going to pass
this, right?’ I mean, in my mind, there’s no way I couldn’t,” Andy says.

Instead,
the head of the cardiology department where Andy works gave him the news. Andy
needed surgery. Soon. He went through a range of emotions — disbelief and fear
at first, before begrudging acceptance.

“Being
a doctor doesn’t make you immune from being a patient,” Andy says. “As
a physician who does procedures, I’m used to being the one in control. As a
patient, I had to abdicate all of that control and recognize that there are
people who know a lot more about what I need than I do.”

A difficult decision

Although
he worked in a medical center known for providing excellent multidisciplinary
care, as a practicing physician, he knew he needed to look elsewhere for his
own care.

“I’ve
worked in the same hospital for 12 years, and I perform complex procedures on
patients every day. It’s my policy to not perform higher-risk procedures on
friends or family,” Andy says. “I knew this was a pretty big surgery,
and I didn’t want a friend or co-worker to have to bear the additional stress
that comes with operating on someone you know quite well.”

Along
with managing a busy clinical practice, Andy leads a nationally recognized
gastroenterology division at Virginia Mason Medical Center, a not-for-profit
medical center in Seattle founded in 1920 by a group of like-minded physicians.
The group included John Blackford, M.D., a Mayo Clinic alumnus who trained
under Henry
Plummer, M.D.
, the namesake of Mayo Clinic’s Plummer
Building. Dr. Blackford’s interests included cardiovascular care, and he and
Dr. Plummer performed Mayo Clinic’s first electrocardiogram
in 1914.

Andy’ affinity for analyzing data to solve problems was instrumental when choosing where to seek care. Mitral valve repair is an uncommon specialty, with only a few places in the U.S. performing the surgery. One of those places is Mayo Clinic.

“One
of the first things I saw in my research were the research publications and
patient resources from Mayo Clinic that showed me this surgery was performed
all the time, which is crucial with something this serious,” he says.

“I felt like I had the game plan I needed and a surgeon who told me, ‘I’ve seen this many, many times.’ I remember thinking that this is the exact same way I’d treat a patient.”

Andrew Ross, M.D.

His
next consideration was the patient experience beyond the surgery itself. Andy
knew that the technical aspects of the procedure would happen while he was
asleep. He wanted to ensure that his care team shared the values he
incorporates in his work with his patients.

A
thoughtful conversation with cardiac surgeon Joseph
Dearani, M.D.
, was a powerful factor in Andy’s
decision to have surgery at Mayo Clinic because it went beyond the technical
details of the operation. Dr. Dearani was direct in discussing the process and
next steps, as well as what recovery would look like.

“Mitral
valve repair is an uncommon operation, but a procedure that we perform
regularly at Mayo Clinic,” Dr. Dearani says. “His valve problem was
straightforward with a high success rate for valve repair, not replacement, and
we could use robotic technology, which is less invasive and has a faster
recovery time. Our team has extensive experience with robotic procedures, and
we were confident that it would go well.”

Andy
was reassured. “I felt like I had the game plan I needed and a surgeon who
told me, ‘I’ve seen this many, many times,'” Andy says. “I remember
thinking that this is the exact same way I’d treat a patient.”

A personable, professional approach

When
it came time for surgery, Andy and Andrea flew from Seattle to Rochester,
Minnesota, and they both noticed the small touches at Mayo Clinic, including
the focus on not just Andy’s comfort but also on Andrea’s.

“I
wasn’t anxious until the day of the surgery, but everything was explained,”
Andrea says. “It was a very calming and relaxing environment. The doctors
and nurses, the people at the pharmacy, the reception desk — they were all so personable,
which speaks to the culture. It was important to me that the first person I
talked to after surgery was Dr. Dearani, who reported that everything had gone to
plan.”

For
Dr. Dearani and his team, this comprehensive, face-to-face care is second nature.
“Interdisciplinary design of practice is natural at Mayo Clinic. It’s a
way of life,” he says. “I’ve heard countless times from patients and
their families, ‘I’ve learned more about what’s going on in the past few hours
than I have in days anywhere else.’ That comes easy here.”

“I knew that the expertise, the values and the culture at Mayo were the right fit for me.”

Andrew Ross, M.D.

Andy
and Andrea returned home, and his active recovery process started with walks
around their hilly neighborhood. “My care team told me, ‘You’re not going
home to sit around.’ And I listened,” Andy says.

Six
weeks later, Andy went back to his medical practice. He saw his patient
experience as cause for reflection on why he became a physician. “Being a
doctor is a great job,” says Andy. “You get to make a huge difference
in people’s lives.”

Now
able to speak from his roles as a patient and as a physician, Andy says the
best thing to do is to learn as much as possible when making decisions about
how to deal with a serious or complex condition. “I knew that the
expertise, the values and the culture at Mayo were the right fit for me,”
he says.

Looking
back on the experience now, he also knows his decision to go to Mayo Clinic was
a good one. “I’m a huge believer that people deserve credit for their hard
work,” Andy says. “As someone who takes care of patients every day, I
know great care when I see it.”

Note: A version of this
story previously was published in
Mayo
Clinic Magazine
.


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