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2 hours ago · Emergency Air Ambulance Transfer and Expert Critical Care Avert Tragedy

Tabetha and Matt Cameron live a quiet life. Partners since their teens, the Camerons spend their days enjoying familiar activities close to their northern Minnesota home. The couple cherishes their tranquil existence, especially since Tabetha underwent a harrowing medical trauma that nearly took her life.
Matt and Tabetha Cameron

Tabetha and Matt Cameron live a quiet life. Partners since their teens, the Camerons spend their days enjoying familiar activities close to their northern Minnesota home. The couple cherishes their tranquil existence, especially since Tabetha underwent a harrowing medical trauma that nearly took her life.




On May 19, after Matt Cameron said goodbye to his wife, Tabetha, and she was whisked away by a Mayo Clinic air ambulance medical team, he wasn’t sure if he’d see her alive again.

In the preceding hours, his wife of 12 years had suffered a complete physical breakdown, going from feeling flu-like symptoms to developing sepsis — a life-threatening condition that causes multiorgan failure. “I honestly didn’t think she was going to make it,” Matt says. “They told me that she was as sick as she could possibly get.”

Tabetha’s
lungs had stopped oxygenating her blood. Lacking oxygen, her liver and heart
stopped working. The only way to keep Tabetha alive was through a process
called extracorporeal membrane oxygenation, or ECMO. That was a problem for
Tabetha and her care team at Altru Health System in Grand Forks, North Dakota —
a member of the Mayo
Clinic Care Network
. The hospital had a surgeon who could start
the treatment for Tabetha. But it lacked resources to sustain the therapy,
which involves shuttling blood from the body via large tubes, called cannulas, into
a machine that adds oxygen to the blood and then returns it to the body.

Altru administrators contacted Mayo Clinic. Within minutes, a conference call convened that involved clinicians from Mayo’s Admission and Transfer Center, Mayo Clinic Ambulance Service — Air Operations, receiving providers from Mayo Clinic, and the team at Altru. Together, they made a decision that gave Tabetha a chance at recovery.

“Thankfully
the providers agreed to put her on ECMO,” says Meghan Lamp, a Mayo Clinic
Ambulance Service air transport coordinator. “We could take that function
away from her body system and do it mechanically for her to keep her alive.”

With precision care provided by the Tabetha’s Mayo Clinic Ambulance Service team and a virtual army of specialists who cared for her upon arrival at Mayo Clinic in Rochester, Tabetha not only survived the ambulance ride, but she was able to weather a months-long hospitalization and a lengthy rehabilitation.

“I
wasn’t very hopeful. It was hard to see a good outcome,” Matt says. “I
would have never imagined that she’d be sitting here next to me doing as well
as she is right now.”

High-stakes medical flight

It might never be known what triggered the infection that led to sepsis and nearly cost Tabetha her life. But what is known is that recovery would have been impossible without strategic coordination and careful planning throughout her ordeal, says Jonathan Fox, M.D., one of the Critical Care specialists who cared for Tabetha during the nearly four weeks she spent in intensive care at Mayo Clinic.

“All
of the patients that we see, what they are undergoing is far too complicated
for any one person to be able to provide adequate care for them,” Dr. Fox
says. “We do it as a team. If we didn’t have all those people, there’s no
way our patients would do as well as they do.”

Careful
orchestration of care was crucial during the two hours Tabetha spent in transit
between Grand Forks and Rochester. Because people connected to ECMO are the
highest-risk patients to transfer, precision planning is essential, says Matthew
Schuldes, a transport team perfusionist. Schuldes was in charge of switching
Tabetha’s ECMO connections from those at Altru to Mayo Clinic’s equipment. He also
oversaw the therapy during her transport.

“There
is a lot of risk in transporting these patients because once you’re in the air,
you don’t have access to a ton of emergency supplies if you would need them
quickly,” Schuldes says.

“There are lots of things to manage. It’s kind of normal for us, but it’s not normal for most people who don’t take care of these patients all the time.”

Matthew Schuldes

Another
concern for the team was managing the large number of connections to tubes and
wires tethering Tabetha to machines, medicine and monitors. “Every part of
her had a tube going in and out,” Schuldes says. “There are lots of
things to manage. It’s kind of normal for us, but it’s not normal for most
people who don’t take care of these patients all the time.”

Two
large cannulas going to and from veins in Tabetha’s groin area were of
particular concern to Schuldes, he says. “Those are the ones I worry about
the most because there are severe consequences if they become dislodged.”

Transport
teams typically average about 30 minutes in hospitals retrieving patients. But
complex cases like Tabetha’s require more time. They involve a collaborative,
methodical approach by the entire transport team of nurses, paramedics,
respiratory therapists and perfusionists to ensure each piece of equipment is
positioned and moved in a coordinated way that ensures patients remain stable
and don’t experience catastrophic changes, says Kelly Sahs, Mayo Clinic Ambulance
Service air transport clinical operations director, who was involved with
Tabetha’s transport.

Collaborative, coordinated care

For Tabetha, the safe trip to Mayo Clinic Hospital — Rochester, Saint Marys Campus was the first leg of a marathon treatment journey that involved support from critical care specialists, cardiologists, pulmonologists, nephrologists, nurses, rehabilitation therapists and many other providers. During the initial days of Tabetha’s hospitalization, her condition was stabilized in the Cardiac ICU while she remained on ECMO. As she improved, her team explored the idea of weaning her from ECMO, but they soon realized there was a heart complication.

“We found there was a problem with her aortic valve and ascending aorta, with a blood clot very close to the aortic valve,” says M. Sertac Cicek, M.D., a Mayo Clinic cardiovascular surgeon. “We decided not to take the ECMO support off and that she needed extra testing to evaluate what was going on with her aorta.”

Tests confirmed there was not only a blood clot next to Tabetha’s heart, but a portion of the aorta adjacent to her heart had developed a bulge, or aneurysm, and that required surgery. “We had to replace that part of the aortic root,” Dr. Cicek says. “We had to replace the aortic valve and had to replace the ascending aorta completely.”

Tabetha and Matt Cameron with members of the team that coordinated Tabetha's medical transport to Mayo Clinic
Tabetha and Matt Cameron with members of the team that coordinated Tabetha’s medical transport to Mayo Clinic.

Tabetha’s recovery from her surgery on May 24 was tenuous. Bleeding, irregular heart rhythms and excess fluid required her chest be reopened and for her to return to ECMO support temporarily. Several days after the surgery, Tabetha was weaned from ECMO, but she needed a tracheostomy to provide stronger breathing support. During this time, she also required dialysis because her kidneys stopped working.

Through
the many weeks in the ICU, Matt kept vigil at Tabetha’s side. “I just
couldn’t leave,” he says. As awful as the experience was, Matt found
reassurance in the constant presence of Tabetha’s care team, who worked around
the clock to manage his wife’s many complications.

“Most
everybody was just as a nice as could be,” Matt says. “Looking back
now, there was one doctor, Dr. Fox — and I don’t know if he was saying it to
make me feel better — but he was like: ‘Everything is going to be all right.
She probably is going to be here for a couple of months, but you guys are going
to get through this.’ That seemed to help. He had so much confidence.”

Offering
mental and emotional support to families is just as important as the medical
help provided to patients, Dr. Fox says. “I don’t think many people have
any inkling of how difficult it is for family members and loved ones to be
there as they watch their loved ones try to recover,” Dr. Fox says. “As
medical professionals, there’s only so much we can do for people under our
care. Many times, we spend as much time helping the families out, helping them
to understand what is going on, what they can expect, and simply listening to
them and to their concerns.”

Gradual, gratitude-filled recovery

Tabetha remained in the Cardiac ICU until mid-June. From there, she moved to a cardiac rehabilitation unit, where she stayed for another week. After that, Tabetha was transferred to a non-Mayo facility for respiratory therapy to prepare for the tracheostomy to be removed. But Tabetha developed pneumonia and was transferred back to Mayo Clinic.

Tabetha
stayed in the hospital for another week before the she was healthy enough for
the tracheostomy removal. A few days after that, Tabetha was discharged, and she
returned to her home in Thief River Falls, Minnesota.

Although
Tabetha remembers little about what happened during her medical odyssey before she
was in the cardiac rehabilitation unit, when she thinks about the experience,
she still feels fear. “She told me that she had a lot of nightmares,”
Matt says. “It pretty much seemed to her the whole time she was out was
like a big, long nightmare.”

After
such a traumatic, life-threatening ordeal, the couple spent the rest of the summer
on easy, familiar activities, like camping and a daytrip to a national park. “I’ve
tried to keep things as normal as possible,” Matt says. He adds that with
each day that passes, Tabetha gains a little more strength. “She does a
little more here and there, and by the week, she seems to be getting better.”

“I feel very lucky that I had the care I did. They say not many people recover from this, and I feel like I got a second chance.”

Tabetha Cameron

For
Tabetha and Matt, events that used to be routine or familiar now have greater
meaning. “I feel very lucky that I had the care I did,” Tabetha says.
“They say not many people recover from this, and I feel like I got a
second chance.”

For
Matt, whose time at Tabetha’s bedside exposed him to situations that ended
differently than his wife’s, the gratitude he feels toward those who enabled
Tabetha’s recovery is profound.

“I
met a lot of people in similar situations to what I was in, and theirs did not
work out as good as mine in every case, so we’re really lucky,” Matt says.
“Without Mayo, I don’t think we’d have the same outcome.”

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3 days ago · Freed From Unrelenting Pain, Bea Fiala is Offering Her Own Kind of Medicine: Laughter

Constant leg pain made it difficult for Bea Fiala to do what mattered to her. In particular, it took her away from the place where she felt most at home — the stage. After traveling to Mayo Clinic in search of answers, however, Bea underwent a minimally invasive procedure that has her smiling and making others laugh again.

Constant leg pain made it difficult for Bea Fiala to do what mattered to her. In particular, it took her away from the place where she felt most at home — the stage. After traveling to Mayo Clinic in search of answers, however, Bea underwent a minimally invasive procedure that has her smiling and making others laugh again.




In
January, Bea Fiala and her husband drove eight hours through a blizzard from their
home in Grand Island, Nebraska, to Rochester, Minnesota, in search of answers.

Bea had spent three years with terrible pain in her right thigh that began several months after knee replacement surgery. At first, it felt like a needling, tingling pain, but the pain got progressively worse. She had consults with specialists, including two local pain management physicians. And she tried several treatments to find some relief, but the pain persisted.

A
stand-up comedian for 18 years, Bea had to stop performing because her pain was
too distracting.

“The
pain came when I stood for more than 15 minutes,” Bea says. “I took
Tylenol. I tried massage, lidocaine patches, capsaicin, medications used for
nerve pain, physical therapy and acupuncture, but I couldn’t find anything to
relieve the pain. Most of the doctors I saw thought the pain was coming from my
back.”

After
several steroid injections in her back and one aimed at the nerve in her thigh,
which only provided a few days of relief, Bea underwent a spinal stimulator
trial. “It made things worse,” Bea says. “I felt I couldn’t keep
living with this horrible pain. I was at my wit’s end.”

Search for a diagnosis

In August 2017, Bea underwent spinal fusion surgery. But, as she suspected, her thigh pain was not coming from her back, and the surgery did not reduce the pain. At that point, she decided she had to go to a facility that could identify and treat the true cause of her chronic pain.

“I
knew something was wrong and thought, ‘I need to go somewhere where they’ll
find me an answer,'” Bea says.

Family members had had good experiences at Mayo Clinic, so Bea asked her primary care doctor to make a referral. During her first visit to Mayo Clinic in Rochester, she underwent electromyography, or EMG, which showed she had an old, inactive irritation of the nerve root at the L5 level of her spine in her lower back.

“In most cases, pain from an L5 nerve root irritation would have been radiating to her buttock, calf and foot, not the anterior thigh,” says Matthew Pingree, M.D., a Mayo Pain Medicine physician. “The EMG findings encouraged us to look for other causes of her pain beyond her back.”

“I knew something was wrong and thought, ‘I need to go somewhere where they’ll find me an answer.'”

Bea Fiala

Following consults with specialists in Neurology and Sports Medicine, Bea learned that her leg pain was coming from the lateral femoral cutaneous nerve in her thigh and was most consistent with a condition known as meralgia paresthetica. The disorder, which is more common in women, is characterized by tingling, numbness and burning pain in the outer thigh. It’s caused by compression of the nerve that supplies sensation to the skin surface of the thigh.

Tight clothing, obesity or weight gain, and pregnancy are common causes of meralgia paresthetica. However, the condition can also be due to local trauma or a disease, such as diabetes. In Bea’s case, the cause was unknown.

New type of treatment

After
reviewing her multidisciplinary evaluation and examining her during an
appointment in April, Dr. Pingree gave Bea an injection of local anesthesia
around her lateral femoral cutaneous nerve.

“Mrs.
Fiala had greater than 50% reduction of her pain within the first 15 minutes after
the injection, which helped us predict that peripheral nerve stimulation of the
lateral femoral cutaneous nerve would have a high likelihood of reducing her
pain,” Dr. Pingree says.

Nerve stimulation for
pain relief is not new. One common form of nerve stimulation, which Bea had
already tried and failed, is dorsal column or spinal stimulation. It works by
blocking pain signals as they travel from the nerves in the arm or leg through
the spinal cord. A newer treatment option, peripheral nerve stimulation blocks
pain signals by stimulating a specific nerve in the arm or leg.

“It’s a more targeted and less invasive treatment
placed near the nerve in the arm or leg rather than in the spinal canal,”
Dr. Pingree says.

Bea underwent the minimally invasive
procedure to implant the stimulator in June. The peripheral nerve stimulating
lead was placed close to her lateral femoral cutaneous nerve.

Although the procedure is performed in
an operating room, it doesn’t require an overnight hospital stay. “No
incision is made. Instead, ultrasound is used to visualize the nerve, and the
needle is used to place the lead,” Dr. Pingree says. “In most cases,
the system can be turned on the same day of the procedure.”

While other peripheral nerve
stimulation systems are available, the one chosen for Bea uses a 15-centimeter
flexible lead that has the thickness and consistency similar to that of a wet spaghetti
noodle.

“On
one end of the lead are three contacts that provide electrical stimulation, and
a plastic flexible anchor that keeps the lead in place. At the other end is a
receiver that communicates with the removable, rechargeable battery that’s worn
externally by the patient,” Dr. Pingree says. “In most cases,
patients can feel the stimulation as a small buzzing sensation.”

Back to a laugh-filled life

When she got home after the procedure,
Bea found that she could go about her daily activities pain-free. For the first
two months after it was placed, she had the stimulator turned on all day. Now she
only needs it for four hours a day.

“Before the stimulator, I was
very limited in what I could do. I had to stop teaching chair yoga, which I
loved,” Bea says. “The pain debilitated my entire life.”

“Being part of the team that helped her have such a positive outcome is very satisfying and one of the reasons I practice pain medicine.”

Matthew Pingree, M.D.

In addition to being able to go about her daily
activities without pain, Bea has been able to return to the stage. “When I’m on stage, it alleviates
everything. It’s like getting all this adrenalin,” Bea says of her stage
act “Bea Funny.” “This is what I’m supposed to be doing. It’s a
natural gift God gave me to make people laugh.”

She
performs for senior expos, church groups and conventions. “It gives me a
personal high to know I’ve made someone feel good,” Bea says. “I’m
not in it to make a million. I’m in it to make a million people laugh.”

“It
was a real pleasure treating Mrs. Fiala. She always kept us laughing,” Dr.
Pingree says. “Dealing with chronic pain can be very frustrating for
patients. Being part of the team that helped her have such a positive outcome is
very satisfying and one of the reasons I practice pain medicine.”


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5 days ago · Back in the Game After Shoulder Surgery

When Mike Gyarmaty dislocated his right shoulder, he hoped corrective surgery at Mayo Clinic would return him to his normal way of life. But that surgery, along with the intense rehabilitation that followed, helped Mike go far beyond those hopes.

When Mike Gyarmaty dislocated his right shoulder, he hoped corrective surgery at Mayo Clinic would return him to his normal way of life. But that surgery, along with the intense rehabilitation that followed, helped Mike go far beyond those hopes.




As
Mike Gyarmaty raced toward home plate during a corporate softball tournament in
Austin, Minnesota, back in 2013, he had a split-second decision to make: slide into
the base feetfirst or headfirst. “I slid headfirst,” he says. “I
was 45 years old at the time. It was not one of my proudest moments.”

While his slide beat the catcher’s tag and propelled Mike’s team to victory, it came at a painful cost. “I blew out my shoulder,” Mike says. “I’d never dislocated a shoulder before. But I knew right away I’d suffered a severe dislocation of my right shoulder when I hit the ground.”

As
he lay in pain near home plate, Mike’s first instinct was to try to pop his
injured shoulder back into place. “I couldn’t do it,” he says. Mike
was taken to the local Emergency Department in Austin, where physicians reset
the shoulder and informed Mike of the full extent of his injury. “In addition
to separating my shoulder, X-rays showed I’d also suffered a labral tear and
broken bone,” he says. “So I knew that wasn’t going to be the end of
my care.”

Expert surgery

Mike was referred to Diane Dahm, M.D., an orthopedic surgeon at Mayo Clinic in Rochester. During an initial examination, Dr. Dahm quickly determined that Mike needed surgery.

“The first time I saw Mike, he could only lift his arm 90 degrees,” Dr. Dahm says. “He was complaining of pain that was 10 out of 10 on our pain scale with use, but only 1 out of 10 with rest. So if he didn’t move it, he was OK. But if he tried to move or use the arm at all, the pain was severe. His MRI also showed a displaced fracture of his right glenoid (shoulder socket), which looked fairly large.”

“I wanted to be able to get back to playing with my kids the way I had before the injury.”

Mike Gyarmaty

After performing a CT scan to better determine the true size of Mike’s fracture, Dr. Dahm and her surgical team went about fixing it with a procedure known as arthroscopic bony Bankart repair. The team had to repair the fracture along with damage to the labrum — the tissue that surrounds the shoulder socket.

“Mike had an extensive tear of the labrum, as well as a displaced fracture which involved a significant amount of the glenoid surface,” Dr. Dahm says. “What we do in that case is first visualize the damaged area through the arthroscope, placing traction stitches through small arthroscopic portals to pull the fracture back into place. We then put anchors in the bone that have stitches attached to them. Multiple stitches are placed through the labrum and around the bone fragment. The stitches are tied, securing things in place. We then make sure everything is stable before completing the procedure.”

Demanding rehabilitation

Leading
up to his surgical date, Mike says his hope was that surgery would not only
help him get back to being the kind of athlete he wanted to be at that point in
his life, but also to return to being the kind of active father he wanted to
be.

“My
goals for surgery were, worst-case, to get back to playing golf and doing
normal exercise as it relates to something a person of my age would do,”
he says. “My best-case scenario was to be able to return to everything I’d
been doing before the injury: lifting weights, playing basketball, pitching
baseballs and softballs, throwing footballs, serving tennis balls. More than
that, though, I wanted to be able to get back to playing with my kids the way I
had before the injury.”

While
Dr. Dahm and the rest of Mike’s care team wanted all of that for him, too, they
knew getting there wouldn’t be easy.

“Everyone
was so professional, so compassionate and so caring,” Mike says of his
care team at Mayo Clinic. “At the same time, they didn’t sugarcoat or
overpromise anything. They said, ‘Your shoulder injury is very bad, but we’re
going to do everything we can to get you back to a normal way of life.’ In
order to do that, they were very up front about how brutal my rehab was going
to be after Dr. Dahm’s surgery.”

Before Mike’s rehabilitation could began, however, Joe Eischen, a physical therapist in the Department of Sports Medicine at Mayo Clinic’s Dan Abraham Healthy Living Center in Rochester, wanted to know more.

“One
of the things we do really well at Mayo Clinic is to ask our patients what
their goals for rehab are and what they’re trying to get back to,” Eischen
says. “We then design a rehab program specifically for them based on their
answers. We do have a standard rehab protocol that we follow with all of our
patients. But every patient is a little different, so we modify that for each
particular patient based on their desires and needs.”

“There was a lot of pain throughout my rehab, but I prided myself on being a very diligent and hard rehabber, and doing whatever Joe asked me to do.”

Mike Gyarmaty

Because
Mike wanted to return to a lifestyle of recreational sports and roughhousing
with his children, the rehabilitation program Eischen designed for him was more
aggressive than most.

“Athletes
are treated a little differently than somebody who doesn’t play sports and who
just wants to get back to living their life,” Eischen says. “Some of
the rehab is the same, of course, but it changes if a patient wants to get back
to playing sports or a job that requires a lot of physical movement.”

Regardless
of a patient’s long-term goals, Eischen says, they’re not allowed to start down
that path until they recover from surgery. “In the beginning, Mike was protected
quite a bit by a brace and couldn’t really do a lot,” Eischen says. “Basically,
we were letting what Dr. Dahm did — the surgical procedure she performed —
heal.”

Once
the healing was complete, it was time for Mike to go to work. “We transitioned
him into getting his range of motion back by starting some basic strength-training
exercises,” Eischen says. “At three months post-op, we wanted him to
have full arm elevation. We also wanted him to have external rotation — meaning
his arm at 90 degrees vertically from the floor, perpendicular to the floor, and
his hand moving backward.”

That
may sound easy. But for someone coming off a severe and painful shoulder
injury, it was anything but. “Just moving my arm back and forth — the most
basic kind of arm movements — would hurt, but I had to do them,” Mike
says. “There was a lot of pain throughout my rehab, but I prided myself on
being a very diligent and hard rehabber, and doing whatever Joe asked me to do.”

Eischen
says the amount of diligence and determination that Mike put into his rehabilitation
is directly proportionate to the results he experienced and how quickly he
experienced them. “Most patients are back to doing a lot of what they want
to be doing six months after this procedure, but everybody’s a little different,”
Eischen says.

Better than ever

Four
months after his surgery, Mike started to see results. “My surgery was in
September, and I can remember playing nine holes of golf in January in Florida,”
he says. “That was a huge milestone for me. I was thrilled. But it was
just a testament to the surgical acumen of Dr. Dahm, as well as to how hard I
rehabbed.”

Today,
six years later, Mike says his injured right shoulder is not only fully healed
and rehabilitated, it actually feels better than his uninjured left shoulder.

“Not
only have I gotten back to doing everything that I was doing before the injury,
I’m now better off than I was before because while Dr. Dahm was fixing my
shoulder, she also went out of her way to clean up the pre-existing damage I’d already
done to it from being a baseball pitcher and serving tennis balls throughout
much of my life,” Mike says. “The surgery has far exceeded my best
hopes and expectations. Forget about getting back to normal, I’ve come out better
than ever.”

“I’m fortunate to have a very good surgical team here at Mayo Clinic, and it’s that whole team who makes stories like this happen.”

Diane Dahm, M.D.

For
Eischen, that represents the best possible outcome. “I got into this
business because I like helping people — helping them achieve their goals in
life and get back to whatever lifestyle it is they want to get back to,” Eischen
says. “So to hear that Mike’s doing so well now is awesome. That’s why we
do this. But it’s also a testament to how hard he worked. Mike should be proud
of himself for following through on his rehab, for doing all that we asked him
to do, and for not going rogue on us along the way.”

For
Dr. Dahm, Mike’s success is also her team’s success. “I’m fortunate to
have a very good surgical team here at Mayo Clinic, and it’s that whole team
who makes stories like this happen,” she says. “It starts in the operating
room with great anesthesia, great surgical nurses and techs, great recovery
room staff, great assistants, great residents, and great physical therapists. It’s
the whole team the whole way through. Every step of the way, you have people
who are doing what’s best for the patient, and when you have that, that’s when
you get patient outcomes like this.”

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Mon, Dec 2 5:00am · Wide, Wonderful Smiles After Cleft Lip and Cleft Palate Treatment

For Rebecca and J Winkowski, learning that their daughter, Everly, would be born with a cleft lip and palate was an unexpected and unnerving discovery. But after meeting a compassionate team of Mayo Clinic physicians committed to Everly's care, those feelings of anxiety and apprehension quickly vanished.

For Rebecca and J Winkowski, learning that their daughter, Everly, would be born with a cleft lip and palate was an unexpected and unnerving discovery. But after meeting a compassionate team of Mayo Clinic physicians committed to Everly’s care, those feelings of anxiety and apprehension quickly vanished.




Rebecca
and J Winkowski have several nicknames for their 1-year-old, Everly. Babyzilla,
because she gets into everything, is one of them. Another term of endearment
the Millville, Minnesota, residents have for their youngest child is Warrior Princess
for the many medical challenges she’s faced since birth.

Affected by cleft lip and cleft palate, Everly’s condition was discovered in utero. Just one week after entering the world on Oct. 1, 2018, at Mayo Clinic in Rochester, she began wearing an orthodontic device to reshape her gums and lips. At 3 months old, Everly underwent her first facial surgery and, eight months later, underwent a second.

Despite
the ongoing medical intrusions into her life, Everly is a happy, smiley girl. “She
just blows my mind,” Rebecca says. “Through everything, she’s been
the happiest little lady. She is so fun, and it just doesn’t seem to faze her.”

Affecting approximately 1 in 1,000 babies, cleft lip and palate is the second most common birth defect. Everly, like all children born with this condition, will require ongoing treatment. But thanks to the commitment of a team of physicians at Mayo’s Cleft and Craniofacial Clinic, the family has been able to navigate the journey well.

From
the obstetrical care Rebecca received from Mari Charisse Trinidad, M.D., before
Everly’s birth, to the help provided by orthodontists John
Volz, D.D.S.
and Chad
Rasmussen, D.D.S.
, when Everly was a newborn, to the
corrections made by surgeon Shelagh
Cofer, M.D.
, the care at Mayo Clinic was kind,
thoughtful and individualized.

“The
people who’ve helped us, they’ve all been great,” Rebecca says. “Whenever
she was having issues … they immediately got us in the office the next day. They
immediately addressed any of our issues. Everyone was on top of it. They went
above and beyond.”

Compassionate, knowledgeable care

Everly’s team at Mayo Clinic began forming around the little girl before she was born. It started with support from Dr. Trinidad in the Department of Obstetrics and Gynecology. “I’m a mom who likes all the answers and am kind of an information junkie,” Rebecca says. “Dr. Trinidad spent so much time walking me through the things that could happen — the good, the bad and the ugly.”

Rebecca
learned that in children with cleft lip and palate, the severity of the
condition can vary significantly. They wouldn’t have a full grasp on Everly’s
condition until she was born.

“Clefts
can be all sorts of different clefts. Sometimes it just involves the lip
itself. Other times, the separation goes into the nose, and sometimes it
extends into the palate,” explains Dr. Volz, who met Everly when she was
just a few days old.

“The first three months are critical to take the deformed nasal cartilage from a concave shape to convex.”

Chad Rasmussen, D.D.S.

When
she was born, the team found that Everly’s cleft was unilateral, or one-sided, affecting
the left half of her mouth. It involved her lip, nose and palate, and resulted
in a separation of her upper lip that extended past her nose and into the back
of her mouth, creating an opening in the roof of her mouth.

For
children with clefts, the biggest concern is their ability to eat. Although
Rebecca attempted to breastfeed Everly, the gap in the infant’s upper lip and
mouth prevented her from forming a strong enough suction to nurse successfully.
The infant could, however, eat from a special-needs bottle. So Rebecca pumped,
and Everly still benefitted from her mother’s breastmilk.

During
Dr. Volz’s first visit with Rebecca and J, he told them about the orthodontic
device recommended for children with clefts. Called a nasoalveolar molding, or
NAM, device, the retainer-like insert helps close the gap created by the cleft
through regular adjustments. The appliance is secured in place with tape
affixed to the child’s cheeks. The child wears it 24/7 for three months.

Photo courtesy of Anna Elise Photography

It
is important to fit cleft-affected babies with nasoalveolar molding devices as
soon as possible. “When a baby is born, the estrogen level is high. Estrogen
levels affect collagen and make it more moldable,” Dr. Rasmussen says.
“The first three months are critical to take the deformed nasal cartilage from
a concave shape to convex.”

Initially,
it was difficult to tape the device into Everly’s mouth, Rebecca says. “You
feel awful — like you are just torturing your child. It seems barbaric to put
this huge thing in their mouths and tape it in.” But after a few weeks, Everly
became upset when the device wasn’t in her mouth. “She did better when she
had it in,” Rebecca says. “And by the end, she didn’t want to eat
without it.”

Each week, from October to early January, Rebecca and J brought Everly to the Department of Dental Specialties to have the device adjusted. Over time, the reshaping effect of the device on Everly’s mouth plateaued. “She is such a stinker and would just smile and pop it out of her mouth,” Rebecca says. “At that point, we knew she was ready for surgery.”

Surgery creates sweet smiles

On
Jan. 10, Everly’s first surgery to repair the cleft was performed by Dr. Cofer,
who’d met the family for a prenatal consult before Everly was born. During the
surgery, Dr. Cofer took advantage of Everly’s reconfigured tissues to
reconstruct a new upper lip and left nostril.

“We
want to restore form and function, so when we have to do a repair, we repair it
in layers,” Dr. Cofer says. “We all have a circular muscle that goes
all the way around our lips, and we have to repair that muscle. Then we try to
create symmetry — we like to make that nice little cupid’s bow of the lip — and
repair the inside of the lip. Then we do the initial repair of the nose, trying
to create symmetry and a functional nostril on the cleft side.”

Everly’s
first surgery went well. “She was her happy little self pretty much right
away,” Rebecca says. “We got smiles in the hospital.”

Immediately
after surgery, Everly was able to drink from a bottle. But it was challenging
because she needed to relearn how to eat using just her tongue. Whereas the nasoalveolar
molding device created a false roof of her mouth, after surgery, the hole in
her palate remained uncovered, allowing fluid to pass into and out of her nose.

“That
was the hardest part for me — watching her eat,” Rebecca says. “She
wanted to eat. But every time she tried to eat something, it would come out her
nose. I’m sure it would hurt her or stung her nose.” 

For
the next several months, while Everly’s lip and nose healed, Rebecca and J
worked with her on learning how to drink out of a spoutless sippy cup — an
important requirement for the palate repair surgery.

“The
cleft palate repair goes all the way to the front of the gumline, and we don’t
want them to be using that area,” Dr. Cofer says. “We prefer the baby
be on a free-flowing sippy cup where they’re not having a bottle nipple sticking
into her mouth to interrupt the repair.”

Near
the end of August, when Everly was 11 months old, she was ready for her second
surgery. Also performed by Dr. Cofer, this operation involved closing both the
hard and soft parts of Everly’s upper palate. “It’s just like a jigsaw
puzzle,” Dr. Cofer says. “You get to figure out how it’s all going to
fit back together. Usually, all the elements are there. You just have to
rearrange it to close the hole in the palate until it fits.”

“I can’t say enough about Dr. Volz and Dr. Rasmussen. They feel like family. The same thing for Dr. Cofer. I asked her a million questions and used the (patient) portal a lot.”

Rebecca Winkowski

Following
the second surgery, with the hole in the roof of her mouth sealed, Everly had
to relearn how to breathe and eat. The initial few days were challenging, and Everly
was limited to syringe feeding and a liquid diet for two weeks, but she recovered
quickly.

“She
was excited to eat,” Rebecca says. “She likes to chew on things and
wants to eat everything. Once we got to the point where she could chew food, I
could tell that she was more satisfied. Crackers and veggie straws are her jam.
And she loved her smash cake for her birthday.”

Teamwork produces a happy ending

For
Rebecca and J, seeing the change in Everly’s features has been stunning. “I
look at her mouth now and see no suture lines down the center,” Rebecca
says. “It’s insane. She looks amazing. She is so cute.”

It
gives the family peace of mind to know that the medical team responsible for
such a dramatic change in their daughter will continue to help them manage any
issues with hearing, speech or abnormal tooth formation that could arise as a
result of the cleft.

“I
can’t say enough about Dr. Volz and Dr. Rasmussen. They feel like family,”
Rebecca says. “The same thing for Dr. Cofer. I asked her a million
questions and used the (patient)
portal
a lot. They’ve been really quick to answer questions
and give me the resources, so I could be more confident because this was
completely new territory.”

Everly’s
medical team members say that her parents are as much to credit for the child’s
outcome as they are. “They’re just amazing at their care and their love
that they give to Everly. They are the reason she is thriving,” Dr. Cofer
says. “We’re her team. We’re here for her. But we work with the parents
just as much as they work with us. She’s a lucky girl to have such great
parents.”


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Wed, Nov 27 5:00am · CAR-T Versus Cancer

Diagnosed with non-Hodgkin's lymphoma in her 40s, Tanis Milicevic tried a number of treatments to keep the disease in check. But the cancer came back. Then her Mayo Clinic care team offered Tanis a new option, and it made a world of difference.

Diagnosed with non-Hodgkin’s lymphoma in her 40s, Tanis Milicevic tried a number of treatments to keep the disease in check. But the cancer came back. Then her Mayo Clinic care team offered Tanis a new option, and it made a world of difference.




At first, Tanis Milicevic’s local doctor told her to wait and
see. Pregnant with her second child, Tanis had been sensitive about changes in
her body when she felt a worrisome bump on the back of her head.

The doctor’s advice gave her temporary peace. The bump was small,
and she could just monitor it. Then, after her baby’s first birthday, Tanis
felt a lump in her underarm. “That’s when I knew that something was not
right,” she says.

Although she felt fine otherwise, her instincts about her health were correct. A biopsy showed she had non-Hodgkin’s lymphoma. Tanis and her husband, Marko, learned that while her disease was slow growing at this stage, it also would be hard to cure.

“It was a difficult pill to swallow, but we remained
optimistic. You live life and push forward,” Marko says. They had to for
their sons, 1-year-old Jonathon and 8-year-old Max.

Aggressive disease

Tanis, then 44, underwent radiation therapy  and then chemotherapy for two years. The treatments kept the cancer in remission for five years. That freed her to focus on her family and her business, a women’s contemporary fashion boutique.

Then the cancer returned. That’s when Tanis decided to go to Mayo Clinic. Under the care of Han Tun, M.D., a hematologist at Mayo Clinic in Florida, Tanis tried two new chemotherapy treatments to manage the recurrence, as well as a second relapse 18 months later. Her cancer was transforming and becoming more aggressive.

At the end of 2017, Tanis reviewed her options with Dr. Tun. It was just a matter of time before the next recurrence. The therapy for this type of cancer usually is a stem cell transplant, but Tanis had no suitable matching donor.

Yet there was still hope. A new treatment has just been approved by the Food and Drug Administration (FDA) for Tanis’ type of lymphoma. Known as CAR-T cell therapy, it had been shown to improve remission and survival rates after other treatments had failed. Mayo Clinic had taken part in pivotal clinical trials that led to FDA approval of CAR-T cell therapy, and it was one of the first medical centers in the nation offering the treatment.

In 2018, Tanis became the first patient at Mayo Clinic in
Florida to receive CAR-T cell therapy. “I don’t think anything could come
at a more perfect time for me,” Tanis says.

Revolutionary treatment

CAR-T cell therapy, or chimeric antigen receptor-T cell therapy,
is treatment that uses a patient’s own cells to fight cancer. T cells are a
type of white blood cell in the immune system that protect people from
infection. In CAR-T cell therapy, T cells are collected from a patient’s blood,
genetically altered in a lab, multiplied and returned to the patient’s
bloodstream. The alteration gives T cells the chimeric antigen receptor, which
helps T cells recognize, latch onto and kill the intended cancer cells.

“I think that in the past 10 years or so, probably this is the most innovative and revolutionary treatment that our field has seen,” says hematologist and oncologist Mohamed Kharfan Dabaja, M.D., director of the Blood and Marrow Transplantation Program and the Human Cellular Therapy Laboratory at Mayo Clinic in Florida.

“(CAR-T cell therapy) has improved the complete remission rate by sevenfold.”

Mohamed Kharfan Dabaja, M.D.

What has been exciting to cancer physicians and researchers is
how CAR-T cell therapy is helping some patients achieve complete remission,
even after other forms of treatments have failed. In complete remission, there
are no symptoms or signs of cancer, and the disease is no longer detectable,
although it could return later.

“It has improved the complete remission rate by sevenfold,”
Dr. Kharfan Dabaja says.

When patients achieve complete remission, they have a better
chance of surviving. Survival rates two years after treatment are shown to have
improved — from as low as 15% to over 50% with CAR-T cell therapy.

CAR-T cell therapy is fast-acting, showing evidence of response
within one to three months. It stands out among similar cancer therapies in
terms of how it overcomes obstacles — such as vast numbers of cancer cells and
suppression of the immune system by cancer — quickly and on its own.

Expanding options

The FDA has approved two CAR-T cell therapies. Presently, both can treat adults with certain types of non-Hodgkin’s lymphoma, but only one treats children and young adults, up to age 25, with B-cell acute lymphocytic leukemia. The therapies are used after at least two previous treatments have failed. They are not yet approved for use in earlier stages of the cancers.

Mayo Clinic is one of the few medical centers certified to offer the FDA-approved therapies. Mayo is also one of the few centers to have experience treating patients with the FDA-approved therapies in clinical trials. The treatments are available at Mayo Clinic in ArizonaFlorida and Minnesota.

CAR-T cell therapy requires the specialty care that Mayo Clinic
provides, especially once the CAR-T cells are infused back into a patient’s
body, where they release chemicals as they kill cancer cells. The resulting
symptoms can be severe.

“These are living drugs,” says Yi Lin, M.D., Ph.D., who leads the Cellular Therapeutics Cross-Disciplinary Group at Mayo Clinic Cancer Center. “Patients oftentimes need hospital, even ICU-level, support. They need to be at a very experienced center as they go through the treatment.”

Mayo Clinic continues to drive forward new research in CAR-T
cell therapy. Mayo is expanding clinical trials with a focus on using the
treatment at earlier stages of cancer and in more types of cancer; countering
the side effects and safely delivering treatment; and even using CAR-T cell
therapy for conditions beyond cancer. Mayo Clinic in Arizona, Florida and
Minnesota all will have trials open for various types of blood cancer this
year.

Complete remission

Tanis met with Dr. Kharfan Dabaja in 2018, and in late spring,
she began the CAR-T cell treatment. Unfortunately, Tanis experienced severe
side effects and was hospitalized longer than she expected. That included
spending time in the ICU. While it was difficult for Tanis, Marko and their
family, the outcome was the result they had hoped for. Six weeks after
treatment, Tanis was in complete remission.

“It’s given me the chance to live, and I’m forever grateful.”

Tanis Milicevic

“This is a patient that had not seen a complete response
for many, many years,” Dr. Kharfan Dabaja says. “Now she is
experiencing a complete response, and with time, her condition has improved
significantly, where she’s almost back to her normal life.”

Tanis reached an important landmark when she was still in
complete remission 90 days after her treatment. More than half the patients who
reach the 90-day mark will be alive two years later, Dr. Kharfan Dabaja says.

Now, for the first time in a decade, Tanis and her family are
thinking of a future without cancer. “Tanis has gone through all the
different treatments. This one definitely feels the most amazing,” Marko
says. “It has allowed me to have my wife and our kids to have their mom.”

“It’s given me the chance to live, and I’m forever
grateful,” Tanis says, “My advice for anybody else who has lymphoma
is to know that there is hope.”

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


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Mon, Nov 25 5:00am · After 'Just Surviving' on Dialysis, Canna Celebrates Life With a New Kidney

Canna Caldwell endured a four-year wait for a new kidney. And for 2½ of those years, she required dialysis four days a week — a grueling experience that sapped her energy and narrowed her world. But then Canna got the call she had been waiting so long to receive, and a kidney transplant transformed her life.

Canna Caldwell endured a four-year wait for a new kidney. And for 2½ of those years, she required dialysis four days a week — a grueling experience that sapped her energy and narrowed her world. But then Canna got the call she had been waiting so long to receive, and a kidney transplant transformed her life.




Most
people are fortunate enough to have two healthy kidneys. Many others lead a
normal life with just one. Canna Caldwell spent a year pushing through life
with none.

Canna, a single mom of three daughters who lives in Mesa, Arizona, was diagnosed with polycystic kidney disease in 1998. The condition causes kidneys to develop cysts that fill with fluid. That enlarges the kidneys and can lead to debilitating pain and serious infections. In Canna’s case, her kidneys weighed three pounds each and were the size of footballs by the time physicians at Mayo Clinic in Arizona had to remove them in August 2018.

For 2½ years, as her kidneys were failing and after they were removed, Canna depended on several hours of dialysis four days a week to do the work her kidneys couldn’t — filtering waste, salt and fluid from her blood. It was an experience she describes as exhausting. She managed to keep going, although Canna admits that sometimes she felt like she wasn’t living at all. “I was tired of just surviving,” she says.

Canna had been placed on the waiting list for a kidney transplant in 2015. But the wait wasn’t easy. Canna says that, as she waited, she went through a process of grieving, comparing her journey to “stages of death.”

All
that finally changed on Aug. 5, when Canna received a new kidney. And with that
kidney, her life was transformed.

A difficult wait

For years, Canna’s life revolved around waiting for a transplant. Due to her family medical history, and because polycystic kidney disease is hereditary, Canna’s family members were unable to donate a kidney to her, and no other compatible living donor was available.

Over
time, Canna’s world became smaller, especially when she started on dialysis. A
self-described social butterfly, most days Canna was confined to her home,
which took a toll on her friendships.

“I had to be my own cheerleader. I used humor to get through.”

Canna Caldwell

Canna
says she knew she had support, but she often felt alone. “I had to be my
own cheerleader,” she says. “I used humor to get through.”
Others thought that Canna looked healthy on the outside. But she explains that although
people on dialysis may look fine, that appearance can be deceiving. “They
are fighting an unseen battle on the inside,” Canna says.

Her
illness not only had an impact on Canna’s health and relationships, it affected
her plans for a career. Canna had been studying to earn a degree in social work
and was considering a job in kidney transplant advocacy. With dialysis taking
up much of her time and energy, however, working wasn’t an option, and she had
to put her college studies on hold.

But
one bright spot remained. A motorcycle enthusiast, Canna coped with her
condition by taking long drives on the weekends out on the open road.

The longed-for call

The
change Canna yearned for finally came on Aug. 4 at 9:30 a.m. That’s when Mayo
Clinic called to relay the good news that a kidney was waiting for her.

Canna was stunned. At first, she suspected it could be false alarm. She asked, “Are you sure it’s a good kidney?” It was. Once Canna passed all the final evaluations, the healthy donor kidney was ready, and on Aug. 5, she underwent transplant surgery at Mayo Clinic.

Since
the transplant, Canna’s health has improved dramatically. Now, she’s committed
to helping others. During her dialysis sessions, Canna made a point of reaching
out to other patients and listening to their stories. Today, her second chance
at life is inspiring Canna to continue that outreach. She’s sharing her story
about dealing with dialysis and transplant in hopes of providing encouragement
to others facing the same journey.


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Fri, Nov 22 5:00am · Bomb Blast Takes Soldier's Career From the Armed Forces to Medicine

A bomb blast caused significant trauma to Senior Airman Josh Labott's patrol. But it was in the aftermath of that catastrophe that Labott found his calling and put him on the path to a career in medicine.

A bomb blast caused significant trauma to Senior Airman Josh Labott’s patrol. But it was in the aftermath of that catastrophe that Labott found his calling and put him on the path to a career in medicine.




Senior
Airman Josh Labott woke from unconsciousness in significant pain after a blast.
His head and back hurt. He couldn’t hear. He knew he was in trouble, and his
unit was under siege.

Labott
had enlisted in the Air Force in 2006, a few weeks before his 18th birthday. As
a bomb disposal expert, he was deployed to Afghanistan and was already three
months into his second overseas deployment in January 2010. On the day he was
injured, Labott and his infantry squad had set out to help secure a school that
planned to allow girls to enroll. The Taliban ambushed his patrol with six
concealed bombs.

Two
members of Labott’s patrol died. Another lost a leg during the ambush.
Helicopters provided air support, and others joined the fray, allowing the
wounded to be evacuated. “I was one of the lucky ones,” Labott says.

Despite his injuries — a traumatic brain injury and ruptured disks in his back — it was during this catastrophe that Labott saw the value in medicine. “When I woke up, my combat lifesaving skills instantly kicked in,” he says. “I scrambled alongside the medics trying to control the blood loss of the injured soldiers in my patrol.”

The
experience gave Labott a glimpse of his future. “After the adrenaline wore
off, that’s when I realized I’d found my calling,” Labott says. “I
knew that I was meant to serve others.”

Life lessons learned early

Growing
up, life wasn’t easy for Labott. He was raised by his grandparents and was
occasionally shuffled from family member to family member. The necessities of
life didn’t leave money for much else. He learned early how to water down a
gallon of milk to make it last all week. Labott doesn’t remember ever going to
the doctor.

“We
went to the Salvation Army for Christmas,” Labott recalls. “I
remember waiting for our bag of toys. We’d use records for Frisbees, because we
didn’t have a record player. But I still felt fortunate to have a roof over my
head and three meals a day, usually.”

When
Labott was 9, he went to live with his father, who was a maintenance worker for
an apartment complex in Milwaukee. They then moved to Big Bend, Wisconsin,
where his father worked hard, eventually training to become certified in heating,
ventilation and air conditioning, and buying a home when Labott was 13.

By
his sophomore year of high school, Labott knew he wanted to see the world
through the military just like his grandfather, a former Marine, had done. That
required a high school diploma. None of his immediate family members had graduated
from high school, and they urged Labott to be the first.

“College
was never really an option for me,” he says. Labott got his high school
diploma and decided to embark on a military career. Little did he know how
short that career would be.

Recovery and realization

Immediately
after the roadside bomb explosion, Labott recovered in Afghanistan. His hearing
returned. He received physical therapy for his back. He participated in Eastern
medicine practices for three months. Undeterred by the rigors of his recovery,
Labott completed his tour of duty.

Labott
was then reassigned in the Air Force to Turkey, where he was a teacher and
supervisor for recent graduates of the bomb disposal school until his medical
discharge in August 2012.

“After being blown up, I figured medical school couldn’t be that hard.”

Josh Labott

“It
was hard to imagine being anything but in the military,” he says. But he
knew it was time to listen to the calling he’d recognized back in Afghanistan.
At 24, he applied to Marquette University in Milwaukee. He began his path to
medicine with undergraduate work in an accelerated three-year program in
biomedicine.

“I
wanted to finish fast, so I took full loads each semester and summer,” he
says. “I lived at home to be near my family and friends.”

Generous gift of education

When it came time to choose a medical school, Labott set his sights on a nearby large university because of its benefits for veterans. Then a friend whose parents worked at Mayo Clinic told him about Mayo’s medical school. “The more I researched the school, the more I knew this was the school I wanted to go to,” Labott says.

Labott
was most impressed with the collaboration among students, the fostering of teamwork
instead of competition, and the ongoing motivation for all students to do their
best. But could he afford to go to Mayo Clinic Alix School of Medicine when the other school had veterans’
benefits? He applied for a scholarship.

As a nontraditional student and recently married, Labott could attend medical school only with financial assistance. Because of the generosity of benefactors to build Mayo Clinic Alix School of Medicine’s endowment, Labott was awarded assistance, making his attendance at Mayo Clinic’s medical school a reality.

This fall, Labott began his fourth year of medical school with plans of becoming an orthopedic surgeon.

“The
financial aid I have received during my education has been life-changing. This
has taken away a huge stressor that would have distracted and distressed me
during my medical school training,” he says. “This aid has allowed me
to study and focus solely on medicine — and not on how I would pay back what
could have added up to massive loan debt. I now have the freedom to choose a
specialty and career path knowing that a loan burden will not affect that
choice.”

In
turn, Labott wants to give back by helping other veterans, amputees and young
soldiers.

“After
being blown up,” Labott says, “I figured medical school couldn’t be
that hard.”


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

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Wed, Nov 20 5:00am · Taking Life One Easy Breath at a Time

When Tim Thomforde was diagnosed with COPD, his quality of life began to gradually decline, and he had to abandon many of the activities he enjoyed. Since undergoing a double lung transplant two years ago, however, Tim has had experiences he never dreamed possible when he was struggling with COPD.

When Tim Thomforde was diagnosed with COPD, his quality of life began to gradually decline, and he had to abandon many of the activities he enjoyed. Since undergoing a double lung transplant two years ago, however, Tim has had experiences he never dreamed possible when he was struggling with COPD.




For Tim Thomforde, the difference between life before and after his double lung transplant has been striking. Tim went from being in a wheelchair on oxygen for nine years to walking his dog at 14,000 feet on top of a mountain in Colorado following his transplant in August 2017.

“It was pretty
amazing because when they pulled the tube out, I could take deep breaths,”
Tim says. “It was like waking up from a bad dream. It had been 12 years
since I felt I could really breathe.”

In 2008, at age 50, Tim was diagnosed with chronic obstructive pulmonary disease, or COPD, which was the result of 30 years of smoking and the emphysema he developed because of it. COPD is a chronic inflammatory lung disease that destroys the lungs’ air sacs, causing obstructed airflow from the lungs. Symptoms include breathing difficulty, especially with activity, as well as coughing, mucus production and wheezing.

Tim remembers vividly celebrating his 50th birthday with
family and friends, and then having oxygen tanks delivered to his farm in
Luray, Kansas. “When I first got on
oxygen, I felt pretty good again. But it held me back because I was always
worried about my tank being empty,” Tim says. “As time progressed, my
breathing got worse. So many things would trigger me — the hot, humid air, any
kind of perfume or dust. I was afraid to do many of the things I used to do. It
changed my whole life.”

Prepping for transplant

Tim was referred to Mayo Clinic by his physician in Hays, Kansas, to begin discussions about a lung transplant. “His lung function was in the 15% to 20% normal range when I first met him in October 2008,” says Mark Wylam, M.D., a pulmonologist at Mayo Clinic in Rochester.

“I couldn’t walk to the bathroom without getting short
of breath,” Tim says. “When I would try to cook breakfast, I had to
get the pan out and go rest before I could make eggs and toast.” Although Tim’s
quality of life was poor, he had to quit smoking and get as physically healthy
as possible before he could be listed for a transplant.

“Getting a transplant is like climbing a mountain. You
have to prepare and make changes in your diet and physical fitness to be able
to do this, which is why early referral is critical,” Dr. Wylam says. “Every
day you’re on the list is a day to get more fit, so the body is strong enough to
undergo the transplant.”

“I trust (Dr. Wylam) and know he has my best interest at heart.”

Tim Thomforde

Tim was put on the transplant list in July 2014, six months after he quit smoking. While he waited for a new set of lungs, Tim was on several medications and participated in pulmonary rehabilitation at Mayo to stay in shape. Because Tim’s blood type is AB negative, finding a compatible donor was difficult.

“Organs are matched to your blood type, and only about
3% of the total population has AB blood,” Dr. Wylam says. “That’s why
patients with this blood type tend to wait longer on the transplant list.”

During the wait, Tim relied on his care team at Mayo. “Dr.
Wylam is such a great guy. He’s great at explaining things. He tells me what he’s
thinking. I trust him and know he has my best interest at heart,” Tim
says. “In 2016, I wanted to spend Thanksgiving on my farm with my family.
But I was worried I might get the call that they’d found me a set of lungs. Dr.
Wylam said he’d come and get me if the lungs came in.”

Relishing life renewed

On Aug. 12, 2017, Tim got the call he’d been waiting for.
And on his 59th birthday, Tim received a new set of lungs during his
transplant, performed by Mayo surgeon Richard
Daly, M.D.

“From the day I woke up from my surgery until now, I
have not required any supplemental oxygen. My oxygen saturation is between 97%
and 100%, and my lung capacity has increased from under 1 liter to 5 liters,”
Tim says. “My near-death situation has turned into a new life, and the
most thoughtful and heroic gift from my donor made this possible.”

“I am eternally grateful for this kind act and for the care I received at Mayo Clinic.”

Tim Thomforde

In the two years since his
transplant, Tim has done lots of traveling, and he’s been able to enjoy getting
back to the activities he loves.

“Just a few months
after the transplant, I walked my dog to the peak of a 14,000-foot-tall
mountain. I got to finally meet my 9-year-old grandson in California. I spent a
week with my children and grandchildren at a lake cabin. That was the first
time all my kids and grandkids were all together,” Tim says. “Reading
stories to my grandkids, making s’mores, and taking them fishing. That’s how
they’re going to remember their grandpa — not the main who was hooked up to an
oxygen tank all the time. I don’t take any of this for granted.”

“There’s nothing
like a lung transplant to rebirth an individual to full capacity. I enjoy being
a lung transplant doctor because of that stark difference we can make in people’s
lives,” Dr. Wylam says. “The transplant patient is completely
liberated from their disease and able to have a normal life.”

Tim calls every day a miracle.
“There are no words to show my appreciation and the appreciation of my
family for this generous, lifesaving gift from my donor,” he says. “I
am eternally grateful for this kind act and for the care I received at Mayo
Clinic.”


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