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6 hours ago · Comprehensive Care Returns Teacher's Focus to Her Love of Learning

Two troubling diagnoses had Erika Bauserman worried about her future. But her care team at Mayo Clinic took care of both medical problems, so Erika could put her health concerns behind her.

Two troubling diagnoses had Erika Bauserman worried about her future. Her care team at Mayo Clinic took care of both medical problems so Erika could put her health concerns behind her.


A retired preschool teacher, Erika Bauserman, is passionate about child literacy. Since moving to St. Augustine, Florida, from Illinois in 2011, Erika spends much of her time volunteering with the Early Learning Coalition of North Florida to encourage reading among preschoolers.

“Books spark creativity and imagination,” she says. “They expose kids to things they may never see or places they may never go.”

In addition to her dedication to helping kids learn, Erika also is an avid photographer who enjoys capturing images of life around her from behind a lens. Her ability to continue pursuing these passions seemed to be in jeopardy, however, when it was discovered that Erika had carcinoid tumors on her lungs and a previously slow-growing, benign tumor began to cause problems.

Thanks to Mayo’s multidisciplinary team approach, Erika has now put those health concerns behind her and returned to the activities she loves most.

Worrisome changes

In 2005, when Erika lived in Libertyville, Illinois, her doctors found that she had a meningioma — a tumor that arises from the membranes surrounding the brain and spinal cord. Because meningiomas tend to be slow-growing, and because hers was small, wasn’t causing any bothersome symptoms, and didn’t appear to be cancerous, Erika’s care team told her she didn’t need to worry about it.

That changed dramatically, however, in 2015. By that time, Erika had moved to Florida. And in November of that year, she was being treated for a bout of pancreatitis at Mayo Clinic’s Florida campus.


“[The tumor] was squeezing my brain and would continue to grow and impact my fine motor area.” — Erika Bauserman


As part of her care, Erika had a CT scan. It revealed nodules in her lungs. Her primary care doctor, Elizabeth Rauschenberger, M.D., in Family Medicine, referred her to Pulmonology. After further evaluation, it was discovered that the nodules were carcinoid tumors.

During an imaging study known as an octreotide scan that was used to determine the exact location of the carcinoid tumors, the tumor in Erika’s brain lit up and revealed that the meningioma had grown to the size of a golf ball.

All-inclusive treatment

A multidisciplinary care team, including specialists from Mayo Clinic’s departments of Oncology, Surgery and Neurosurgery, was assembled to coordinate Erika’s care.

First, cardiothoracic surgeon Matthew Thomas, M.D., removed the carcinoid tumors in her lungs in July 2016. After that, Erika then met with neurosurgeon Betty Kim, M.D., Ph.D., to discuss the meningioma. Although the tumor wasn’t cancerous, it was growing. And it had the potential to cause serious problems.

“It was squeezing my brain, and would continue to grow and impact my fine motor area,” Erika says. “So Dr. Kim told me she would need to remove it.”

On June 8, 2017, Dr. Kim performed a surgical procedure to remove the tumor from Erika’s brain. The five-hour surgery was a success. When Erika awoke, the tumor was gone, and she would need no additional treatment.


“The doctors were very thorough and responsive, and the nursing care was phenomenal.” — Erika Bauserman


“Dr. Kim came up to my room while I was recovering and couldn’t believe I was doing word search puzzles,” Erika says. “We were both so excited.”

A follow-up brain scan four months later confirmed that no traces of the meningioma remained.

“My experience at Mayo was exceptional. Dr. Kim is a very brilliant woman, and she assembled a great team,” Erika says. “The doctors were very thorough and responsive, and the nursing care was phenomenal.”

Back to school

With the carcinoid tumors and the meningioma taken care of, Erika has turned her attention back to the work that means so much to her. Since the surgery, her involvement with the Early Learning Coalition has expanded to include two additional programs: science exploration and a fine arts program.

“I have a lot of passion for what I do, and the coalition has allowed me to use skills I have as a preschool teacher to give back to my community,” Erika says. “Now that I’m 100 percent healthy, I can do that worry-free.”


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1 day ago · Young Minnesota Man Survives an Older Man's Emergency

At age 32, Doug Larsen didn't look like someone who would have a stroke. But he did. Fortunately, prompt diagnosis and treatment curtailed the damage and helped speed Doug's recovery.

At age 32, Doug Larsen didn’t look like someone who would have a stroke. But he did. Fortunately, prompt diagnosis and treatment curtailed the damage and helped speed Doug’s recovery.


While Doug Larsen, 32, hung out with his boys and sipped coffee at a shop in Red Wing, Minnesota, last year, he slowly began experiencing double vision. A physician assistant at Mayo Clinic Health System in Red Wing, Doug was well-aware that wasn’t a good sign, especially as the troubling symptom persisted.

“After an hour, I realized I couldn’t text anymore,” Doug says. “I was trying, but I couldn’t form the words. It was strange to see the letters coming out wrong. I work in the Emergency Department, so it became clear what was happening. I was having a stroke.”

Not the typical patient

Doug’s symptoms continued to progress. Luckily, his wife was in a meeting just two blocks away. After receiving Doug’s texts, she ran to the coffee shop and called an ambulance. By the time he arrived at Mayo Clinic Health System in Red Wing, Doug couldn’t speak or move the right side of his body.

“My 1-year-old and I were at the same level of speaking,” he says.

Although strokes often are perceived as problems for older adults, several conditions can cause them in younger people.


“I wanted to answer their questions, but I couldn’t at that point. Then I lost consciousness.” — Doug Larsen


“I don’t look like the kind of person who would have a stroke,” Doug says. “I’m in fairly decent health and shape.”

Providers in Red Wing initiated a telestroke session, in which stroke experts at Mayo Clinic Hospital — Rochester examine patients remotely using a computer interface that allows them to see and speak with patients.

“I wanted to answer their questions, but I couldn’t at that point,” Doug says. “Then I lost consciousness.”

Coordinated care across the miles

A standardized, evidence-based process is used to treat stroke patients across all Mayo Clinic Health System sites. Patients first receive a CT scan. That’s followed by initiation of the telestroke service. Next providers ask patients a set of questions that help gauge the severity of the stroke on a scale of 0 to 42, with 42 the most severe. An EKG and lab tests come next. The patient then typically receives a tissue plasminogen activator, also known as a clot-busting medication, and he or she is transported to Mayo Clinic’s Rochester campus for ongoing care.

The specialist who remotely diagnosed Doug recommended a helicopter flight to Mayo Clinic Hospital – Rochester, Saint Marys Campus for emergency treatment. After a CT scan and EKG, Doug was given a tissue plasminogen activator in Red Wing, and the treatment continued throughout the helicopter flight.

“I don’t remember the helicopter ride to Rochester, but I woke up in the CT scan room” after an additional scan there, he says. Doug soon regained full movement of his body and could speak again, albeit slowly.


“I knew that if I wasn’t treated quickly but survived, there were so many things I wouldn’t be able to do anymore. This could have been a devastating stroke.” — Doug Larsen


After an overnight stay in the hospital, Doug learned he had experienced a type of stroke called a paradoxical stroke. It was caused by a blood clot slipping through a hole in his heart and traveling to his brain.

The hole was news to him. “I had no idea that there was a hole in my heart before the stroke hit,” he says. “I hadn’t had any symptoms before that.”

His treatment required surgery that involved installing a permanent device into his heart. Doctors used a groin catheter to place the device, which Doug describes as being “like two umbrellas side by side that clamp down on the hole. It’s brilliant in its simplicity.”

Quick response reaps rewards

It took about a week for Doug to regain more normal speech patterns. He says to this day he still has to concentrate on his voice inflection and cadence, especially when he’s tired. He is doing well, but he does have to take a baby aspirin daily.

“I’ve had procedures and medications now that are typical of my 65-year-old patients,” he says.

Between Doug’s knowledge of stroke symptoms and the quick response times from the ambulance, providers at Mayo Clinic Health System in Red Wing and specialists at Mayo Clinic’s Rochester campus, he was diagnosed and treated promptly. That fast action likely saved his life.

“I knew that if I wasn’t treated quickly but survived, there were so many things I wouldn’t be able to do anymore,” he says. “This could have been a devastating stroke.”


“I’ve found myself being more conscious of what I do with each hour of the day, not letting them slip by and not dwelling on negative things.” — Doug Larsen


Doug is now back to his 32-year-old lifestyle, enjoying his family and appreciating every day. He says the best speech therapy he has had is reading Dr. Seuss to his kids every night.

“I’ve found myself being more conscious of what I do with each hour of the day, not letting them slip by and not dwelling on negative things,” he says.

Since his stroke, Doug is relishing the opportunities to enjoy his favorite hobbies, such as mountain biking, rock climbing, rappelling around Red Wing, canyoneering through Zion National Park in Utah, and bow hunting for elk in the mountains of Colorado.

“I enjoy the ordinary things,” he says. “Because there was a good chance I’d be unable to do those things if that day hadn’t gone exactly like it did.”


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4 days ago · Fetal Surgery Sets the Stage for a Healthy Birth

Diagnosed with a life-threatening condition at 20 weeks gestation, Xavier Sorying underwent an innovative operation while in utero that helped him overcome his birth defect.

Diagnosed with a life-threatening condition at 20 weeks gestation, Xavier Sorying underwent an innovative operation while in utero that helped him overcome his birth defect.


Xavier Sorying is a calm, smiley 7-month-old who seldom fusses and recently discovered his voice. His baby squeals and babble, and even his cries, delight his parents, Melissa and Ben Sorying. They also reassure the couple that despite a troubled start, their son is healthy.

Before Xavier was born, his diaphragm — the muscle that separates the abdomen from the chest — developed a hole. As a result, his abdominal organs moved into his chest cavity, pushing aside his heart and restricting his lung development.

Called congenital diaphragmatic hernia, or CDH, the rare condition affects roughly 1 in 2,000 infants. It put Xavier at risk for a slew of life-threatening complications, including underdeveloped lungs, pulmonary hypertension, gastrointestinal disorders and failure to thrive.

“It was scary,” Melissa says. “There was a lot of stress and crying.”

As devastated as Melissa and Ben were when they learned of their baby’s diagnosis at Melissa’s 20-week ultrasound, the couple, who live in Detroit Lakes, Minnesota, were given a glimmer of hope. Specialists in the Fetal Diagnostic and Intervention Center at Mayo Clinic’s Rochester campus were pioneering a treatment as part of a clinic trial that would allow Xavier’s lungs to grow and develop, improve his chance of survival, and minimize future complications from his condition.

Two months later, Melissa and Xavier underwent a fetal surgery known as fetoscopic endoluminal tracheal occlusion, performed under the direction of Rodrigo Ruano, M.D., Ph.D., in Mayo Clinic’s Department of Obstetrics and Gynecology.

“It still blows my mind that he went through all of that so quickly, and here we are, seven months later, and he’s growing and healthy,” Melissa says. “You wouldn’t even think that he had CDH until you see his scar. He’s doing everything like a normal baby should.”

Innovative medicine

Children with congenital diaphragmatic hernia not only have a hole in an essential breathing structure, but their lungs and heart are compressed by the shifting of their abdominal organs, says Dr. Ruano, who is the director of the Fetal Diagnostic and Intervention Center. That often requires a high level of care, typically in a neonatal intensive care unit, or NICU.

 “The lungs are very small, so when the baby is born, they will have difficulty exchanging air,” Dr. Ruano says. “The baby would need to be intubated and go to the NICU, and sometimes, depending on the severity of the defect, the lungs could be too small and the baby could die.”

When Melissa found out Xavier had a severe form of the condition, it was followed by the sobering news that many babies with the condition don’t survive long after birth.

“I was thinking, ‘OK, so I’m going to carry this baby for nine months, and he’s going to die right after I give birth to him,'” she says. “A couple of times before I was approved for the surgery, there were times I had to think about ending the pregnancy. I am so glad I was approved.”


“[Xavier] was bigger than we expected, which made his management more straightforward, and he was able to be repaired and even discharged earlier than term.” — Denise Klinkner, M.D.


Xavier is one of three babies in the Midwest who’ve received the innovative treatment at Mayo Clinic, according to Dr. Ruano, who has performed the procedure more than 80 times in the past 13 years at other national and international health care facilities. At Mayo Clinic, Food and Drug Administration and institutional approval are required before the procedure can be done.

During the procedure, Xavier and Melissa, who was then 28 weeks pregnant, both received local anesthesia. Using ultrasound-guided imaging, a team of physicians, including Dr. Ruano and Denise Klinkner, M.D., in Pediatric Surgery, went in through Melissa’s uterus and inserted a fetal endoscope through Xavier’s mouth and into his trachea. In the trachea, a balloon was implanted and inflated.

Once placed in Xavier’s trachea, the balloon prevented fluids secreted by his lungs from escaping. The pressure then expanded Xavier’s lungs and encouraged the growth of essential structures related to his lung function — such as aveoli, the tiny air sacs in the lungs where oxygen and carbon dioxide are exchanged. As a result, he would be born better equipped to breathe.

Early delivery, minimal complications

Typically the balloon remains in place until the baby reaches 34 weeks gestation. During a second operation that’s much like the first, surgeons remove the balloon from the baby’s trachea, which allows the child to take in air.

However, Melissa’s water broke at just 32 weeks, and she started having contractions while the balloon was still in her son’s throat. That was a problem because it could put Xavier’s breathing at risk.

Before birth, a baby receives oxygen via the placental connection, says Dr. Klinkner. “Once the baby is born, the placenta wants to separate. But we needed to keep that connection intact until we could get the balloon popped. The balloon has to be popped before the baby can have his first breath.”


“The first time I heard him cry was when they finally took out the airway tube. It was just a relief to know that he was able to stay breathing on his own, and that everything was going to be all right.” — Melissa Sorying


On the day of Xavier’s birth, June 7, 2017, Melissa underwent a surgical procedure called an ex utero intrapartum treatment. It ensured that Xavier remained connected to Melissa’s placenta until the balloon could be removed.

“It takes great faith to go ahead with something like this,” Dr. Klinkner says. “For her to have general anesthesia — she doesn’t know how the baby did until she wakes up — that’s an important piece.”

Despite being nearly two months premature, Xavier surprised his medical team.

“He was bigger than we expected, which made his management more straightforward, and he was able to be repaired and even discharged earlier than term,” Dr. Klinkner adds.

About a week after Xavier’s birth, Dr. Klinkner performed surgery to fix Xavier’s herniated diaphragm.

“We had to create a diaphragm for him,” Dr. Klinkner says. “We essentially brought all of the contents back down into the abdomen and sewed a mesh patch into the remnant of the diaphragm.”

Xavier remained on oxygen support with a breathing tube in the NICU for another six weeks before he was weaned off of the oxygen.

“The first time I heard him cry was when they finally took out the airway tube,” Melissa says. “It was just a relief to know that he was able to stay breathing on his own, and that everything was going to be all right.”

Melissa adds that Xavier’s 43-day stay in the NICU was significantly shorter than other babies with congenital diaphragmatic hernia.


The fact that we collaborated and had such a great outcome points to what Mayo Clinic strives to do, which is to put the patient first.” — Denise Klinkner, M.D.


“He was blowing the doctors away with his progress,” she says. “It was just amazing.”

That Xavier’s recovery surpassed his medical team’s expectations speaks to the importance of Mayo Clinic’s team approach, says Dr. Klinkner.

“I think the biggest point of this particular case is the fact that we work so well as a multidisciplinary team,” she says. “It incorporated maternal-fetal medicine, as well as ENT, pediatric surgery, neonatologists, adult and pediatric anesthesiologists. The fact that we collaborated and had such a great outcome points to what Mayo Clinic strives to do, which is to put the patient first.”


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Fri, Feb 16 7:28am · Football Coach Gets Big Win With Kidney-Pancreas Transplant

Brian Bell lived with Type 1 diabetes for more than 20 years, until a combination kidney-pancreas transplant offered a chance to rid him of the disease. Now he's making the most of his fresh start.

Brian Bell lived with Type 1 diabetes for more than 20 years, until a combination kidney-pancreas transplant offered a chance to rid him of the disease. Now he’s making the most of his fresh start.


It was out of character for 11-year-old Brian Bell to not enjoy his grandmother’s famous gumbo on Mother’s Day 1991.

“That wasn’t normal. Mother’s Day is a big deal in Southeast Texas,” Brian says. “She had the whole spread there, and I couldn’t eat or drink anything. I just threw up all night.”

A trip to the hospital the next day resulted in a diagnosis for Brian that would put his “normal” on hold for 25 years. The news was bleak for a young kid. Brian had Type 1 diabetes that required four insulin shots a day.

The diagnosis landed Brian on a winding medical path that, over time, led through the upper Midwest and then back to the desert Southwest. Eventually, a combined kidney and pancreas transplant in 2016 at Mayo Clinic’s Arizona campus allowed Brian to leave those shots behind and look forward to a healthier future.

Coping with chronic disease

Growing up with diabetes and injecting himself with medication each day greatly affected Brian’s formative years, right down to the simple things kids do, like staying overnight at a friend’s house. His mom would say no, and now Brian gets it. A simple sleepover could have put his health at risk.

“My buddies would have fed me Gatorade and pizza. And candy,” Brian says. “I mean, I would have eaten all of it.”

Another disappointment for Brian was not being able to play middle school football because he was losing weight too rapidly, barely able to hold at 115 pounds. But, in time, Brian was able to keep his diabetes in check — even going on to play his favorite sport.

Brian attended Bemidji State University in Minnesota, where he excelled in football and made great friends. Being a kid from Texas, he wasn’t prepared for the cold weather, joking, “Bemidji is in Canada, right?” But frigid weather didn’t scare Brian away from the Midwest. After finishing college, he attended graduate school in Madison, South Dakota, and landed a teaching and coaching job at Iowa Central Community College in Fort Dodge, Iowa, where he had once played football.


“I can’t thank the doctors enough at Mayo. They are first class, the way they treat you.” — Brian Bell


Then a surprise call came from Minnesota State University in Mankato, Minnesota, asking Brian to join the Minnesota State Mavericks. He eagerly took the job and coached football in Mankato for eight years, where the last four years resulted in big wins for the team and a trip to the Division II National Championship in 2014.

It was in Mankato where Brian first learned about Mayo Clinic and began receiving care through Mayo Clinic Health System. In 2012, Brian’s condition took a turn for the worse when he learned that, due to diabetes, he had developed kidney disease.

His physician didn’t mince words. Brian recalls being told, “This thing is like a snowball, the way your kidneys are reacting. We could slow the disease down, but you can’t stop it. Eventually, you are going to need a kidney transplant.”

At that point, Brian recalls that total denial kicked in. “Nope, not me, not this guy,” he told himself.

Considering a new possibility

With the prospect of a kidney transplant still looming in his future, Brian decided to make another move — this time back down south. New Mexico State University had asked him to join their team as a defensive back coach. He jumped at the chance to move to Las Cruces, New Mexico, where he vowed to never again wear a winter jacket.

When Brian’s nephrologist in Las Cruces informed him that it was time to seriously consider a transplant and told him that he could go to Mayo Clinic, Brian shot back, “What? Mayo? I have to go all the way back to Minnesota again? I just left there!” But he relaxed after being assured he only needed to go as far as Mayo Clinic’s Arizona campus, where they regularly perform kidney transplants.

Brian wasted little time getting to Phoenix for his transplant evaluation. At that time, his care team presented him with the prospect of waiting for a kidney and a pancreas for transplant. At first Brian balked, saying he would be “fine with just a kidney.”

But Brian’s Mayo Clinic nephrologist, Janna Huskey, M.D., was convincing in recommending that he wait for both organs. Having a healthy pancreas and new kidney would not only mean he wouldn’t require dialysis, the procedure also could eliminate his need for daily insulin. Hearing that, Brian told Dr. Huskey, “I really wanted a shot at a kidney-pancreas transplant.”


“It would be unbelievable to meet [my donor’s family]. These people saved my life and probably the lives of others, too, with donations. I would not be around without them.” — Brian Bell


On Aug. 4, 2016, the phone call Brian had been waiting for came, announcing that he should get to Phoenix for the transplant. “Oh, oh. Here we go again,” was Brian’s first reaction. He wondered if it really was his time for the transplants, given his recent history.

His skepticism about whether the transplants would take place was well-founded. It was the fourth such call he had received over a period of a few months, announcing that a kidney and pancreas were potentially available. Each time, it was a mad rush to get to Phoenix. But those first three kidney and pancreas organs, after careful examination, turned out not to be right for Brian.

At one point, amid the disappointment, Brian was “starting to lose it a little bit,” he says. He called his mom, who gave him some poignant advice. She told Brian, “Listen to me. God knows when it’s the right time for you, and don’t rush that guy, right?”

Brian hoped the fourth time would be the charm. It was. After he arrived at Mayo Clinic Hospital in Arizona, he says he’ll never forget the words from a member of his care team: “Mr. Bell, good news. It’s surgery time.”

Moving beyond diabetes

The transplant surgery went smoothly for Brian. Looking back, he applauds not only his medical care at Mayo Clinic, but “how they treated us so well — my wife, my mother, my sister — and they worked around my schedule.”

“I can’t thank the doctors enough at Mayo,” Brian says. “They are first class, the way they treat you. If you don’t go there, you’re crazy.”

With his health now dramatically improved, Brian hopes he can one day meet the generous family that agreed to donate their loved one’s organs.


“Brian has made the most of it. He loves life. He hasn’t let any of this set him back. He is an amazing role model for myself, as well as for all the kids he coaches.” — Janna Huskey, M.D.


“It would be unbelievable to meet them” he says. “These people saved my life and probably the lives of others, too, with donations. I would not be around without them.”

A combined kidney-pancreas transplant, explains Dr. Huskey, was the best treatment option for Brian, giving him the most promising shot at a healthy life going forward.

“Brian has made the most of it. He loves life. He hasn’t let any of this set him back,” she says. “He is an amazing role model for myself, as well as for all the kids he coaches.”

Watch this video to learn more about Brian’s story:


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Wed, Feb 14 7:00am · A New Lung, a Wedding Ring and a Second Chance at Life

For Jim Jones, the joy of his wedding day was multiplied by a much-anticipated phone call from Mayo Clinic. That same day, a lung had become available for a transplant, and the possibility of a healthy life ahead was within Jim's reach.

For Jim Jones, the joy of his wedding day was multiplied by a much-anticipated phone call from Mayo Clinic. That same day, a lung had become available for a transplant, and the possibility of a healthy life ahead was within Jim’s reach.


Wedding days are often life-changing. But for Angi and Jim Jones, the day they got married wasn’t just the beginning of their life together, it was the day Jim got another shot at a healthy future. As they were on their way to get their marriage license signed, the couple got the call from Mayo Clinic that they had been waiting for — a lung was available for Jim.

“We signed the papers, put the wedding rings on, gave each other a kiss, and went to the hospital,” Jim says.

After being diagnosed with a life-threatening lung disease 1½ years earlier, Jim could not believe his second chance at life through a lung transplant was just hours away — on the same day he’d gotten married.

Hit by trying times

The couple met in 2003 when they carpooled to the construction site of a new health care facility where both worked as steamfitters and welders. Their jobs involve installing and welding together the metal piping systems that run air conditioning systems and deliver water, gas or chemicals within a facility.

“We’ve worked out of the same union doing jobs locally, and we also traveled around the country together to work at nuclear plants, steel mills, powerhouses and oil refineries,” Angi says. “As the years passed, we became good friends.”

In 2015, while working near St. Louis, Jim developed severe bronchitis that turned into pneumonia. After taking a month off, he took a job in Minnesota and then came home in December, where he and Angi began working at a paper mill not far from his farm in Green Cove Springs, Florida.


“The doctor told me I had about three years to live and put me on medication to help lengthen my life.” — Jim Jones


The following April, after battling a sinus infection, Jim developed a cough that wouldn’t go away. His primary care doctor referred him to a pulmonologist. Jim underwent several tests and was diagnosed with idiopathic pulmonary fibrosis, an incurable disease in which the lungs become thick and stiff due to scarring.

“The doctor told me I had about three years to live and put me on medication to help lengthen my life,” Jim says.

Shocked by his diagnosis, Jim went to see his primary care doctor again and asked for a referral to another pulmonologist for a second opinion. That pulmonologist recommended Jim start the process of getting on the transplant list at Mayo Clinic’s Florida campus.

In the summer of 2017, after Angi returned from a job site in Boston, Jim told her about his disease and the possibility of a lung transplant.

“His condition was getting worse, and I began doing a lot of work around his farm to help him out,” Angi says. “We had been friends for so long and knew each other so well, we ended up falling in love.”

Soldiering on, together

With Angi by his side, Jim began the transplant evaluation process in September 2017.

“I didn’t want to lose my best friend. I’ve had some difficult times in my life, and he was always there for me,” Angi says. “When you have someone you value like that, you’ll go to the end of the earth for that person.”

Approved for either a double-lung transplant or single left-lung transplant, Jim was placed on the transplant waiting list on Oct. 22. The day his name was added to the list, Jim proposed to Angi.

“It’s not how I wanted to do this, but I want to be married before I lay down on the operating table,” Jim says.

Blown away by his proposal, Angi said yes. Six days later, while driving to be married, the couple got the call from Jorge Mallea, M.D., in Mayo Clinic’s Lung Transplant Program, that made a future together possible.


“It’s not how I wanted to do this, but I want to be married before I lay down on the operating table.” — Jim Jones


“You never know when you are going to get that call,” Angi says. “But when we did, I got this feeling of, ‘He’s going to be saved.'”

“Dr. Mallea told us he only had one lung,” Jim says. “I had to decide driving up the road if I wanted to move forward to just one lung or wait for two to become available.”

Jim and Angi asked the doctor if Jim could live with just one lung.

“He explained that you can live a fulfilling life with just one lung,” Jim says. “And I would spend half the time in surgery and have a faster recovery.”

Celebrating new possibilities

Jim decided to move forward with the transplant surgery. Before he was taken to the operating room, one of the nurses brought a cake to mark the couple’s marriage. After the small celebration, Jim’s lung transplant was performed by Mayo Clinic surgeon Mathew Thomas, M.D., M.B.B.S., and his team.

“His right lung was strong enough that it held through the surgery,” Dr. Mallea says. “He was removed from the ventilator on the same day.”


“It was a beautiful thing to see how perfectly connected everything was … It’s amazing what surgeons can do.” — Angi Jones


A few days after the transplant, Mayo Clinic pulmonologist Francisco Alvarez, M.D., did a bronchoscopy to see inside Jim’s new lung. Angi was fascinated by the images.

“It was a beautiful thing to see how perfectly connected everything was,” Angi says. It reminded her of her work as a welder. “We fit metal pipes together. Dr. Thomas fits flesh pipes together. It’s amazing what surgeons can do.”

Jim stayed in the hospital for two weeks. After that, he began cardio-pulmonary rehabilitation three times a week for three months.

“The entire team at Mayo was excellent,” Angi says. “We had so many questions the day of his surgery. We were nervous, and Dr. Mallea took the time to answer all of them and explain everything to us. He’s sweet. He’s easygoing, and he makes you feel at ease.”

Angi and Jim are planning an October wedding celebration on their farm on the anniversary of his transplant.

“I consider myself most fortunate for the good Lord giving me the opportunity for a second chance at life. I’m not going to waste it,” Jim says. “We want to do some traveling in Tennessee and Alaska, and we’re going to visit friends in Costa Rica.”

Adds Angi, “I’m just happy I found the man I’ve always of dreamed of having in my life, and the best part is he’s my best friend.”


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Tue, Feb 13 10:28am · Genetic Sleuths Dig Deep to Identify a Young Boy's Rare Condition

When Karter Malcomson was born, his care team knew it was likely he had a genetic disorder. But a clear diagnosis was elusive. That's when the functional genomics team at Mayo Clinic's Center for Individualized Medicine went to work. And they didn't give up until they had an answer.

When Karter Malcomson was born, his care team knew it was likely he had a genetic disorder. But a clear diagnosis was elusive. That’s when the functional genomics team at Mayo Clinic’s Center for Individualized Medicine went to work. And they didn’t give up until they had an answer.


Karter Malcomson coos and swivels his head when he hears his name in his mother’s reassuring voice.

“You know we’re talking about you, don’t you?” Karter’s mom, Kerrie, says. “Karter is a very happy boy. He’s very content. He’s very interested in everything, especially people. He’s definitely a people person.”

His father, Zane, spins Karter upside down on his lap, and they both have wide grins.

“Kerrie always says how much Karter loves me,” Zane says. “I notice it when I come home from work, and he reaches out to me and wants me to hold him. We have a great bond.”

Karter just turned 2, but he is delayed in growth and cognitive abilities. He also has a surgically made hole in the front of his neck into his windpipe to aid in breathing.

“He’s obviously very small, the size of a 6- or 8-month-old, and he doesn’t walk,” Kerrie says. “He doesn’t do any of that normal 2-year-old stuff.”

A true medical mystery

Kerrie and Zane knew before Karter was born that he would have health concerns. Karter had stopped growing in the womb. He also grew extra fingers — a sign of a genetic disorder. After he was born at Mayo Clinic’s Rochester campus, Karter spent three months in the newborn ICU, but the exact cause of his health problems was unclear.

“Before his diagnosis, the wondering was the worst,” Kerrie says. “When you just don’t know, you’re like, ‘How do I help my child? I don’t know what I’m doing. I don’t even know what he has.'”

Karter’s symptoms didn’t place him in any well-defined rare disease category. Even at an institution like Mayo Clinic, which sees more than 1.3 million people each year across a wide spectrum of complex conditions, his care team realized that there was something different about Karter’s rare genetic disorder.


“It’s so complicated. But there’s so much potential here for the future.” — Charu Kaiwar, M.D., Ph.D.


The Mayo Clinic Department of Clinical Genomics consults with physicians who treat patients like Karter, whose case was handled by clinical geneticist Pavel Pichurin, M.D. Dr. Pichurin and his colleagues try to determine the genetic disorder and provide patients with a diagnosis through tests and a review of scientific literature.

But what if, after all testing is complete, the symptoms a person has don’t match up with the results or the results are inconclusive? What happens if there is no answer? What happens to cases like Karter’s?

Genetic quest for answers

That’s where Charu Kaiwar, M.D., Ph.D., comes in. Dr. Kaiwar, a Mayo Clinic research fellow, is part of a group that reviews the cases of people who have exceedingly rare or undiagnosed disorders like Karter’s. Dr. Kaiwar is a member of the functional genomics team at Mayo Clinic’s Center for Individualized Medicine.

The group includes a team of experts in lab science, data crunching and genetics who work together to find genomic-based answers to some of the most puzzling patient questions. That often means sifting through the literature of thousands of cases and information on thousands of genetic variants in a person’s body that may — or more likely, may not — be significant.

“It’s so complicated,” Dr. Kaiwar says. “But there’s so much potential here for the future.”

The quest for answers for patients who typically have been bounced around from specialist to specialist in other health care organizations before arriving at Mayo Clinic can become an all-consuming pursuit.


“These patients and families are finally able to move on from the constant wonder about the cause of their disease and focus on what they might now be able to predict.” — Margot Cousin, Ph.D.


“We are usually the last resort. We could spend hours or months on it,” says Filippo Pinto e Vairo, Ph.D., another of the team’s research fellows. “That’s what motivates us. We are a team that works together with different backgrounds. We know we can share experiences and learn from each other and provide something to patients.”

The team, which is reviewing about 50 cases at any given time, solves approximately 30 percent of them. And that percentage is rising.

“Many patients with an unknown genetic disorder will have spent years managing their health problems while also trying to determine what the disease actually is,” says Margot Cousin, Ph.D., a health sciences research fellow. “To be done hunting for the answer, it provides a lot of comfort. These patients and families are finally able to move on from the constant wonder about the cause of their disease and focus on what they might now be able to predict.”

Uncovering clues for Karter

Nicole Boczek, Ph.D., a molecular geneticist, was one of the leaders of Karter’s care behind the scenes for the functional genomics team. Dr. Boczek actually never met the happy-go-lucky boy, but she spent months working on his case.

“Karter’s testing came back with two interesting variants, both of them within the same gene: C2CD3,” says Dr. Boczek. “Only one paper had ever been published regarding this gene related to disease. It overlapped pretty well with Karter’s symptoms. But we had to take these findings to the next level and prove these variants of uncertain significance were related to Karter’s symptoms.”

To do that, Dr. Boczek and the team performed additional laboratory testing to show that the genetic variants were affecting protein development and driving Karter’s disease. Through the team’s work, they homed in on a diagnosis: oral-facial-digital syndrome. This syndrome has at least 13 types, but Karter’s case didn’t fit in the other 13 categories. It was diagnosed as type 14.

“There are nine individuals reported ever in the literature with this condition stemming from this gene,” says Dr. Boczek. “Since we’ve worked on Karter’s case, we now are contributing to the literature with four more cases. It is really rare, but it is inspiring.”

The journey ahead

Kerrie says finding an answer to Karter’s condition has brought her peace, while Zane said he believes the information will help them in the future.

“There’s so much potential. His doctors can only guess at what he’ll be able to do, and he continues to surprise us every day,” Zane says. “It gives us hope for the future.”

Karter’s breathing, sleep and vision issues are managed by a comprehensive treatment plan. He also works with a physical therapist weekly. Kerrie raves about the compassionate care Karter and the family have received each step along the way.


“There’s so much potential. His doctors can only guess at what he’ll be able to do, and he continues to surprise us every day. It gives us hope for the future.” — Zane Malcomson


“I really have grown to love the care team he has now,” Kerrie says. “I don’t have to worry.”

And Karter, who listens intently and claps intermittently to a musical toy in his living room, has proven the ability to exceed any preconceived expectations. Kerrie and Zane hope one day Karter will be able to meet milestones such as crawling, changing positions and maybe walking. But for now, they’re happy that he’s happy.

“Karter is a happy boy, not someone with health issues,” Kerrie says. “He’s very personable. He’s everybody’s best friend.”

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


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Fri, Feb 9 10:01am · Remission Accomplished With a Novel Approach to Medication Allergy

Bob Christmas was allergic to the medication most likely to control his recurrent multiple myeloma. His Mayo Clinic team tackled that challenge by desensitizing Bob to the medication, putting him on the road to remission.

Bob Christmas with his daughter, Lauren, and his wife, Ruth.

Bob Christmas was allergic to the medication most likely to control his recurrent multiple myeloma. His Mayo Clinic team tackled that challenge by desensitizing Bob to the medication, putting him on the road to remission.


Bob Christmas had gone through a bone marrow transplant and several medication regimens to keep multiple myeloma in check. But the disease kept coming back. Then he learned he was allergic to the very medication that offered the best chance to control his cancer.

Mayo Clinic pharmacists, allergists and hematologists worked together and found an innovative way for Bob to take that medication despite the allergy. And it has nearly stopped the progression of his cancer.

Bob, from Peoria, Illinois, was a communications executive for Caterpillar, Inc. when he was diagnosed with multiple myeloma seven years ago. He traveled to Mayo Clinic for a second opinion and saw hematologist Martha Lacy, M.D.

“It was one of the smartest things I ever did,” he says of coming to Mayo Clinic. “Otherwise, I wouldn’t be here.”

A tricky obstacle

Multiple myeloma is cancer that forms in a type of white blood cell called a plasma cell. The disease causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.

Under Dr. Lacy’s care, Bob underwent a bone marrow transplant in 2011, and the cancer went into remission for several years. Bob came back to Mayo Clinic in 2015 because of leg pain. It turned out to be a symptom of the cancer returning. Different medications worked for a time to keep the cancer under control. But by spring 2017, the disease was again progressing.

Genetic testing indicated that therapy with a medication called pomalidomide was the most likely to benefit Bob. The medication helps bone marrow produce normal blood cells and enhances the ability of the immune cells to kill abnormal cells in the bone marrow.


“[Coming to Mayo Clinic] was one of the smartest things I ever did. Otherwise, I wouldn’t be here.” — Bob Christmas


Bob started pomalidomide treatment in July 2017. But he had to stop after just five days, due to an allergic reaction.

Dr. Lacy wondered if there was a way to make the medication safe for Bob to take. She asked Mayo Clinic pharmacist Kristen McCullough, Pharm.D., if Bob’s body could be desensitized to the pomalidomide, so he could take it without experiencing an allergic reaction. Dr. McCullough worked with colleagues in Mayo Clinic Specialty Pharmacy and Allergic Diseases to check the medical literature, assess the safety of the approach and develop a one-day desensitization regimen, so Bob could tolerate pomalidomide.

No patient on Mayo Clinic’s Rochester campus had previously gone through a similar process with pomalidomide. And at the time, there was no published literature on the topic. The team was able to contact another cancer center that had performed a similar procedure. After a thorough analysis, Bob’s team was confident the desensitization could be accomplished safely.

A well-calculated solution

Bob discussed it with the medical team and agreed to the desensitization process. On Sept. 15, 2017, Roger Warndahl, a Mayo Clinic pharmacist and expert in compounding medications, formulated 10 syringes of pomalidomide with gradually increasing doses to be given to Bob over six hours. The first dose was 0.00025 milligrams, which is 1/4,000 of the smallest commercially available capsule.

The allergy team “was prepared for anything,” Bob says. But he had no allergic reaction to the greatly reduced dose. “My wife and I read magazines. It was a nonevent.”

With that initial success, the team continued the desensitization process, gradually increasing the dose throughout the day.


“I know many people were involved in developing the desensitizing process. That part was invisible to me. But I want to thank them all for what they did.” — Bob Christmas   


With the desensitization process complete, the couple returned to Peoria the next day, and Bob started a daily dose of 2 milligrams of pomalidomide under the supervision of his local hematologist to ensure he continued to tolerate the medication.

By the end of December 2017, Bob’s cancer numbers had improved by 90 percent. Beyond some fatigue, he says he has not experienced side effects. Retired from Caterpillar, Bob now consults on corporate communications.

“I know many people were involved in developing the desensitizing process,” he says. “That part was invisible to me. But I want to thank them all for what they did.”


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Thu, Feb 8 11:15am · Back to Nature After Specialized Care for a Disabling Condition

When Michael Rybak began to have trouble moving his arms, he feared his days of enjoying the outdoors may be over. But his team at Mayo Clinic was able to diagnosis and successfully treat his rare condition. Now he's back to doing what he loves.

When Michael Rybak began to have trouble moving his arms, he feared his days of enjoying the outdoors may be over. But his team at Mayo Clinic was able to diagnosis and successfully treat his rare condition. Now he’s back to doing what he loves.


Michael Rybak is an avid photographer, kayaker, scuba diver and whale watcher who moved to Hawaii from Minnesota six years ago because of his love of the ocean.

The Maui resident is part of a research organization that monitors humpback whale populations. More than 10,000 of these whales fill the waters between Maui and Molokai from December through March to mate, give birth and care for their newborn calves.

“We motor into a designated area, spot whales and do photo identification that will be used for tracking migration and behavioral patterns,” Michael says. “At the same time, we do health assessments, particularly looking for entanglement damage from fishing gear and other debris. If we find a whale that’s entangled, our team will use the latest whale rescue equipment to free it.”

For a time, Michael worried his participation in this important work might end when a mysterious illness led to severely restricted mobility in both of his arms. But thanks to care at Mayo Clinic, Michael has regained his health, and he’s excited to be part of the expeditions once again.

Puzzled by strange symptoms

Michael began noticing problems with his arms in 2015.

“I went to pay cash at a gas station, and I couldn’t take my change with one hand,” the retired ad agency creative director says. “That’s how restricted my range of motion was. I couldn’t rotate my arms.”

He went to several doctors and specialists in Hawaii that summer. No one could figure out what was causing his condition, which was accompanied by severe pain. And the skin on his arms and chest had the appearance of an orange peel.


“I got an immediate feeling of confidence from Dr. Mueller. He’s got the kind of bedside manner you dream of in a doctor.” — Michael Rybak


After two months of waking several times a night from intense pain and worsening stiffness, Michael decided to write a letter to Mayo Clinic. He also sent along several photos of his arms. Less than two weeks later, on Nov. 11, 2015, he flew to Mayo Clinic’s Rochester campus for an appointment with Paul Mueller, M.D., in the Department of General Internal Medicine.

“I got an immediate feeling of confidence from Dr. Mueller,” Michael says. “He’s got the kind of bedside manner you dream of in a doctor.”

Pulling together a team of experts

When he saw the photos Michael had sent, Dr. Mueller suspected eosinophilic fasciitis, a condition also known as Shulman’s syndrome. It’s a rare disorder that causes the skin to thicken and feel like wood. Dr. Mueller consulted with colleagues in the departments of Dermatology and Rheumatology, including Floranne Ernste, M.D., a world-renowned expert in this condition.

“There’s inflammation that occurs in the subcutaneous fat, and can extend into the muscle and cause the tissue to become hardened and fibrous, significantly affecting a person’s range of motion in their extremities,” Dr. Ernste says.

The inflammation is due to an excess of a type of white blood cells, called eosinophils, that fight infections and parasites.


“Getting affirmation from colleagues was really the Mayo Model of Care at its finest.” — Paul Mueller, M.D.


In addition to his appointment with Dr. Mueller, Michael had a series of blood tests and imaging exams. He met with a variety of Mayo Clinic specialists, including rheumatologists, dermatologists, hematologists, infectious diseases specialists and cardiologists. After thorough evaluation, the multidisciplinary team confirmed Michael had eosinophilic fasciitis.

“Getting affirmation from colleagues was really the Mayo Model of Care at its finest,” Dr. Mueller says. “We help each other out and bring to bear the highest level of diagnostics, and someone who’s an expert in the condition treats the patient. That’s what differentiates us.”

According to Dr. Ernste, a delay in treatment of eosinophilic fasciitis often can result in poor outcomes. “There’s a six-month window of time before the skin starts to bind down and scar,” she says. Fortunately, Michael arrived at Mayo Clinic just three months after his symptoms started, so there was still time for successful treatment.

Getting on the road to recovery

In December 2015, Michael was given a high dose of glucocorticoids, administered intravenously over three days. Then he began taking oral steroids before returning to Hawaii around Christmas.

“Eosinophils respond very well to steroids, but you want to limit exposure to high-dose steroids because of concern for significant side effects with long-term use,” Dr. Ernste says. “We added methotrexate during his January 2016 follow-up to start tapering Mr. Rybak off the steroids.”

During that same follow-up visit, dermatologists discussed with Michael a procedure called extracorporeal photopheresis that reduces inflammation in the muscles. The treatment involves removing blood from a patient, spinning it to separate cellular components, and then extracting white blood cells. A photosensitizing medication, called 8-methoxypsoralen, is added to the white blood cells. The cells are then exposed to ultraviolet A light. Afterward, the treated cells are returned to the patient’s body.


“Dr. Ernste is very pleasant and articulate. She fills you with confidence that the team of doctors is doing everything they can.” — Michael Rybak


Michael would need at least 20 treatments. But under the care of Dr. Ernste and the rest of the team, he was confident in moving forward.

“Dr. Ernste is very pleasant and articulate. She fills you with confidence that the team of doctors is doing everything they can,” Michael says. “After assessing all the information, she says, ‘OK, I think this would be the best course of action,’ and involves you in every treatment decision.”

In May and June 2016, Michael had seven weeks of twice-weekly extracorporeal photopheresis. He also had light treatments that helped soften the hardened tissue and increase the mobility in his arms. After a short trip back home, Michael returned to Mayo Clinic for another round of photopheresis treatments over five more weeks.

“By the end of the year, my skin started loosening up a lot,” Michael says. “My flexibility came back, and I could move my arms more.”

Problem solved

Over time, Michael continued to see improvement.

“A year and a half ago, I couldn’t paddle a kayak. I couldn’t ride a bike, and I couldn’t carry anything over 10 pounds,” he says. “But by March 2017, the flexibility in my arms was completely improved.”

In November 2017, Michael got some great news. His eosinophilic fasciitis was gone.

“It brought tears to my eyes to see how ecstatic he was about learning he was cured,” Dr. Ernste says. “When you embark on a journey with a patient that’s going to involve long-term treatment, it’s very gratifying to see them respond and achieve a full recovery.”


“I don’t care if I have to fly 4,000 miles; it is so worth going to Mayo.” — Michael Rybak


From Michael’s perspective, the comprehensive team approach at Mayo Clinic made all the difference.

“The whole idea of collaborative medicine is a real point of difference from other hospitals,” Michael says. “I’m also so impressed by the dedication of the doctors. They’re real problem-solvers. I’ve never had doctors spend so much time with me. They wouldn’t let me leave the office until every question was answered.”

Having grown up in Minnesota, this wasn’t Michael’s first experience at Mayo Clinic. As a young teen, he had been treated at the clinic for a cornea disease.

“I wish I’d gone to Mayo earlier. I don’t care if I have to fly 4,000 miles; it is so worth going to Mayo,” he says. “You get right to the cause of your symptoms and have the best specialists in the world treating you.”


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