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Stories from patients, family, friends and Mayo Clinic staff

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1 day ago · Looking to Crack the Code on Cavernous Malformations

Kandie Nelson didn't know she had a medical problem until the moment she wasn’t able to speak clearly. Now Kandie and her family are helping researchers learn more about the abnormally formed blood vessels that triggered her symptoms.

Kandie Nelson didn’t know she had a medical problem until the moment she wasn’t able to speak clearly. Now Kandie and her family are helping researchers learn more about the abnormally formed blood vessels that triggered her symptoms.


Blood vessels in Kandie Nelson’s brain had become abnormally tangled and twisted around themselves. But for years, she didn’t know it. Until one day when she picked up the phone at work.

“I was working at the front desk of a hotel, and I went to answer the phone, and it came out, ‘Blah, blah, blah.’ I couldn’t talk,” she says. Numbness in her hands and feet came next. Then she fell to the ground.

After being rushed to a local hospital and undergoing a series of tests, she learned what was happening. Hidden close to the surface of Kandie’s brain was a tiny tangle of blood vessels called a cavernous malformation, which Mayo Clinic neurologist Kelly Flemming, M.D., says often take on the appearance of a “little raspberry or cluster of grapes in the brain.”

The malformations occur when capillaries divide abnormally, creating a small tangle of blood vessels. In many people, they often go undetected and unnoticed. Symptoms are rare.

“We find these accidentally,” Dr. Flemming says. “Somebody had a head trauma, and they are being scanned … Or they may have migraines, and they undergo an MRI.”


“God puts you here for a reason. I believe one of my reasons is to help find a cure for this.”

Kandie Nelson

But the abnormalities do sometimes show themselves, as in Kandie’s situation. While Dr. Flemming says it’s unclear why some people develop cavernous malformations and which ones will trigger symptoms, one thing is becoming more certain. In about 2 out of 10 cases, there’s a family connection. And each affected family member usually has several cavernous malformations.

That was the case for Kandie, along with her son, Bryan, and daughter, Kayla, who also were found to be living with cavernous malformations. Bryan’s was in his spinal cord and brain stem, and Kayla’s in the temporal lobe of her brain. Fortunately, each was in a location that allowed for safe surgical removal.

Now that the malformations are gone, Kandie, Bryan and Kayla are helping doctors better understand and treat cavernous malformations.

“All three of us have donated our malformations to science,” Kandie says. “God puts you here for a reason. I believe one of my reasons is to help find a cure for this.”

Learn more about Kandie, Bryan and Kayla’s story in this video:


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4 days ago · Rabbi Returns to His Life's Mission After Bile Duct Treatment

When debilitating itching and fatigue prevented him from working, Rabbi Melvin Gruber turned to Mayo Clinic, where a series of specialized procedures allowed him to get back to teaching and sharing his knowledge with his community.

When debilitating itching and fatigue prevented him from working, Rabbi Melvin Gruber turned to Mayo Clinic, where a series of specialized procedures allowed him to get back to teaching and sharing his knowledge with his community.


Rabbi Melvin Gruber has dedicated his life to studying and teaching the Talmud, a written compilation of Jewish oral law and tradition, and the subsequent commentaries on it. But for a time, debilitating itching, fatigue and high fevers — symptoms of bile duct obstruction — kept the rabbi from teaching.

“The saddest thing is when he hasn’t touched his books,” his wife, Barbara, says.

Rabbi Gruber turned to John Martin, M.D., a Mayo Clinic gastroenterologist, for help. Dr. Martin was able to offer him a series of specialized procedures that opened the blocked bile ducts, relieving the symptoms and allowing Rabbi Gruber to return to his work.

“I feel good. I can give my classes, which I couldn’t do before,” Rabbi Gruber says. “I have a grandson who’s going to have a bar mitzvah, and I am now able to prepare him, which makes me so happy.”

Battling frustrating symptoms

In 2001, Rabbi Gruber had a liver transplant. He needed the transplant due to serious liver damage from primary sclerosing cholangitis, a rare autoimmune disease. The disease involves persistent inflammation that causes scarring, hardening and narrowing of the bile ducts, which carry the digestive liquid bile from the liver to the small intestine.

Twelve years after his transplant, Rabbi Gruber developed bile duct infections. Those infections led to obstruction of the bile ducts that triggered itching and fatigue. His care team in Chicago evaluated his condition using a procedure called endoscopic retrograde cholangiopancreatography, or ERCP. During the procedure, a flexible tube is passed down the throat and into the small intestine. Dye is injected through the tube into the area where the bile ducts from the liver empty into the intestine.

Every year to year and a half, the rabbi had these procedures along with balloon dilations. During the dilations, a slender tube with a balloon at its tip is placed in the bile ducts. Then the balloon is inflated to open the blocked ducts. These procedures kept Rabbi Gruber’s symptoms at bay for a time.

Benefitting from expert care

In 2017, the rabbi’s fatigue and itching became debilitating again, and he began experiencing high fevers. He asked his local hepatologist to refer him to Dr. Martin at Mayo Clinic. Dr. Martin previously treated Rabbi Gruber in Chicago, but he had moved to Mayo Clinic’s Rochester campus.

Dr. Martin performed an ERCP for the rabbi in February 2017, widening some of the blocked bile ducts with balloon dilation. After that, Rabbi Gruber returned to Mayo Clinic in April 2017 for another balloon dilation, as well as stenting. Stents are tubes placed in the bile ducts that force the ducts to remain open. Dr. Martin did the procedure in a way that was tailored to Rabbi Gruber’s medical situation.


“We felt such confidence in Dr. Martin. He always makes us feel at home.”

Barbara Gruber

“ERCP is not offered in very many medical centers for patients with this particular type of liver transplant anatomy because the distance between the mouth and the reconstruction of the bile ducts created during a transplant can be two to four times the normal length,” Dr. Martin says. “You need physicians who are technically capable of performing a complex ERCP using a longer scope that’s not made specifically for this procedure, which can take anywhere between two and three hours.”

To ensure the best outcome, Rabbi Gruber and his wife traveled to Rochester from Chicago every couple of months for the procedure. Each time, they were pleased with the care the rabbi received.

“The nurses are wonderful,” Rabbi Gruber says. “When they roll me into the room for the procedure, they make me feel more relaxed and at ease.”

“We felt such confidence in Dr. Martin,” Barbara says. “He always makes us feel at home.”

Getting back to what he loves

With each visit to Rochester, Rabbi Gruber was able to go longer periods of time without being homebound by extreme itching and fatigue.

“Recurrent dilation and stenting have afforded him a minimally invasive way to keep his liver functioning and relieve symptoms,” Dr. Martin says. “For him, it restores quality of life and functionality.”

Several months ago, Rabbi Gruber finally was able to resume his classes. “Being able to share my insights on the Talmud and the Torah gives me a lot of joy,” he says.

In December 2018, the rabbi felt well enough to teach both early morning and late-afternoon classes at the synagogue. “That was the first time in a year and a half that he could do that,” Barbara says. “It was a big breakthrough.”


“When we go to Mayo, my personal feeling is I’m going to see a good friend.”

Rabbi Melvin Gruber

With Rabbi Gruber’s life no longer limited by health concerns, the Grubers are grateful for the compassionate care he received at Mayo Clinic that’s restored his ability to teach.

“There are a lot of good doctors out there, but Dr. Martin really treats us like family,” Barbara says. “He’s shown us a level of caring that I’ve never seen from anyone else.”

“When we go to Mayo, my personal feeling is I’m going to see a good friend,” Rabbi Gruber says.

For Dr. Martin, being able to develop and maintain that type of relationship with a patient is crucial.

“It’s the human side as well as the expertise we offer at Mayo,” Dr. Martin says. “People know when you care about them, rather than just caring for them, and that’s what keeps people coming back.”


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6 days ago · Treatment Advances Keep Lung Cancer in Check, Care Close to Home

Diagnosed with stage 4 lung cancer, Kurt Jacobson has received state-of-the-art care from Mayo Clinic without needing to travel far from his home in northern Wisconsin.

Diagnosed with stage 4 lung cancer, Kurt Jacobson has received state-of-the-art care from Mayo Clinic without needing to travel far from his home in northern Wisconsin.


Kurt Jacobson blamed Florida. He’d developed a cough in the Sunshine State and thought it might be from something in the air. But when Kurt, a former pastor, returned home, the cough remained. He wasn’t worried, though. After all, it was November. The 59-year-old Cumberland, Wisconsin, resident knew all about winter colds.

But when the cough lingered into January, Kurt started to become concerned. So did those around him.

“People kept telling me to get it checked,” Kurt says. He did and was diagnosed with sinusitis. “I went on an antibiotic for 10 days, and it had no impact,” he says. “I continued to cough to the point of gagging.”

At the end of February, a chest X-ray suggested Kurt had pneumonia. But another round of antibiotics again failed to curb the cough. A follow-up X-ray showed his lungs were unchanged. He was scheduled for a CT scan two days later.

“By that time, I’d begun to have other symptoms,” Kurt says. “I was losing weight, and my appetite had decreased. I wanted to sleep all the time.”

He’d searched his symptoms online, so the doctor’s report that followed the CT scan did not come as a surprise. “They thought I had lung cancer,” he says. Additional testing confirmed that Kurt had stage 4 non-small-cell lung cancer.

Faith and expert care, close to home

Kurt shared the news on CaringBridge — a website for patients to share personal journeys — in a post that highlighted his faith:

Stepping back from the rapidly developing story, I am encouraged and confident. I have you, along with a myriad of loving, life-giving family and friends — a circle of love, faithfulness and hope. I have top-notch medical professionals providing care — who are friends I cherish and experts I admire. … But foremost, I have the utmost trust in a God who gives life abundantly. Come whatever, no matter what, God is ahead, above, below, behind and beside me (and you, too!). What’s better than that?

After his diagnosis, when Kurt was asked where he wanted to receive care, his answer was Mayo Clinic. He was told Eyad Al-Hattab, M.D., a Mayo Clinic Health System oncologist in nearby Barron and Eau Claire, Wisconsin, could see him in Cumberland the next day.

“I was surprised,” Kurt says. “I expected to have to go to Barron or Eau Claire.”


“Being able to access care locally takes the stress of traveling away.”

Eyad Al-Hattab, M.D.

Thanks to a partnership between hospitals, Dr. Al-Hattab sees patients in the community one day a month. That can be a tremendous benefit to people being treated for cancer.

“A cancer diagnosis by itself is stressful to patients and their families,” Dr. Al-Hattab says. “Being able to access care locally takes the stress of traveling away. We can provide up-to-date, high-quality care right here in northern Wisconsin. And if a patient needs to access a higher level of care, we can seamlessly refer them to Eau Claire or Rochester. It’s a very patient-centered system.”

On March 15, 2018, Kurt had his first appointment with Dr. Al-Hattab. “He’d reviewed my records, and we had a good conversation about what lay ahead,” Kurt says.

During that conversation, Kurt asked Dr. Al-Hattab for unflinching honesty. “I told him that as a pastor, I’d been with people in lots of settings facing lots of things,” Kurt says. “I told him I was a realistic person and asked him to tell me what the picture looked like for me.”

That would depend, Dr. Al-Hattab said, on whether Kurt’s cancer had a genetic mutation or would test positive for PD-L1, a protein found on immune cells. With the mutation, he’d be eligible for targeted therapy treatment that likely would keep the cancer at bay for close to three years. Without the mutation, he’d receive chemotherapy, and the response to treatment likely would not be as good.

“Pray that this cancer has the genetic mutation!” Kurt wrote on CaringBridge. “The targeted oral therapy or immunotherapy would be easier, and potentially allow and provide a quality of life for a longer time.”

Targeted therapy

Less than a week later, those prayers were answered. Kurt did have the mutation, called ALK.

“Dr. Al-Hattab came into the exam room with almost a skip in his step and a smile on his face,” Kurt says.

The news meant Kurt would forgo chemotherapy in favor of targeted therapy that blocks the specific mutation his cancer harbors. The treatment consists of eight pills a day — four each morning and four at night. The treatment has been an unqualified success for Kurt.

“I started taking the drug on April 4. Within two weeks, I felt better,” he says. “Within 10 days, the cough went away for the first time in 4½ months.”


“It’s extremely rewarding to see him respond so well and so quickly. In his case, this is science meeting faith.” 

Eyad Al-Hattab, M.D.

In May, a chest X-ray showed Kurt’s lungs, which had been full of tumors, were clear. He reflected on the development on CaringBridge:

Gone. Shot out. Blown away are those uninvited cellular intruders which gave me cough for months. A miracle for now. A product of extraordinary science all wrapped up in a pill. A gift of a wise, skilled, up-to-date oncologist. An outcome of your prayers. A combination of the power of faith bringing such a vast community together to root for me and bring about positive outcomes. Amazing. Unexpected. Appreciated. Awe-inspiring.

The next month, a PET scan came back clear, as well. The response to treatment was as good as could have been hoped. Kurt again rejoiced.

“If you have to have lung cancer, now is a good time to have it,” he says. “Five years ago, my options would have been very different. Now for patients like me, who respond to treatment like I have, the average disease-free progression is 33 months.”

By then he hopes another treatment will have been developed to outsmart the evolving cancer cells.

Progress forward

Dr. Al-Hattab shares Kurt’s hope. “We’ve made huge strides even from where we were 10 years ago,” he says. “There’s constant developing of new treatments. It’s an exciting time to be in oncology and taking care of patients.”

That’s particularly true when treatment goes as well as Kurt’s. “It’s extremely rewarding to see him respond so well and so quickly,” Dr. Al-Hattab says. “In his case, this is science meeting faith.”

Kurt will stick with the daily immunotherapy treatment as long as it continues to be effective. And he’ll keep living his life as close to normal as possible, though he recognizes that life with a serious illness is a new normal.

“This diagnosis has amplified time,” he says. “I’m working on how to be a good steward of the time I have left.”

That’s meant spending time with friends and family, and looking for new ways to contribute to the world around him. Kurt also has joined an online support group — something he’s found surprisingly powerful.


“I never dreamed I would have access to this level of care where I live. It’s extremely well-coordinated and highly efficient.”

Kurt Jacobson

“I was always a supporter and never saw myself being the person in a support group,” he says. “But being part of this group has been incredibly helpful. To know there are others out there living with the realities of this disease is an extraordinary thing.”

Also extraordinary, Kurt says, is knowing that Dr. Al-Hattab and his colleagues at Mayo Clinic Health System are close by to support him.

“I never dreamed I would have access to this level of care where I live,” Kurt says. “It’s extremely well-coordinated and highly efficient. And Dr. Al-Hattab is an absolutely delight. I know I’m in the best hands with him.”

He also rests in the confidence that whatever course his cancer takes, he’s supported by friends, family and a loving God.

“What won’t change is the power of prayer and even better, the mercy which is God’s specialty,” Kurt wrote on CaringBridge. “There’s nothing else needed, is there? So press on my friends, living your amazing life with faithfulness and servanthood. I’ll be back in touch another day.”

Note: A version of this story previously was published in Hometown Health.


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Tue, Jan 15 7:46am · Emerging From the Grip of Chronic Pain

For years, the chronic pain of Crohn's disease isolated Breanne Spence from family and friends. Then, at Mayo Clinic's Pain Rehabilitation Center, Breanne learned how to manage the pain, so she could take control of her life again. Left to right are Breanne's mom Laura, Breanne and Breanne’s sister, Jessica.

Breanne, center, with her mom, Laura, and sister, Jessica.

For years, the chronic pain of Crohn’s disease isolated Breanne Spence from family and friends. At Mayo Clinic’s Pain Rehabilitation Center, Breanne learned how to manage the pain so she could take control of her life again.


Breanne Spence, typically an active teen, tried valiantly to keep up with her high school friends who were attending dances, getting their driver’s permits and singing in choir concerts. “It was a normal life for them,” Breanne says. “It’s what kids my age did.”

Not Breanne. Instead, she was relegated to the sidelines, isolated from family and friends. She often curled up in a ball with a heating pad, preferring to shut out the world. But it wasn’t by choice.

At 13, Breanne was diagnosed with Crohn’s disease — the source of tormenting pain that put her life on hold. She recalls a somber moment in an elevator with her parents after she received the diagnosis.

“They just had this look of devastation,” she says. “It was like they knew nothing was going to be the same anymore.”

For a number of years, that was an accurate assessment. Within a few months of being diagnosed with Crohn’s disease, Breanne’s weight plummeted to 87 pounds. “I couldn’t keep fluids in, and I was in extreme pain,” she says. She had to be home-schooled for eighth grade. “That’s when we realized we had to do something more, or I wasn’t going to make it.”

Something more presented itself in October 2015. A local physician suggested Breanne and her family investigate the Pain Rehabilitation Center at Mayo Clinic’s Arizona campus. That suggestion signaled the beginning of a remarkable turnaround.

Defined by pain

Breanne’s physician explained that the multifaceted pain rehabilitation program at Mayo Clinic would open soon, and it had the potential to change a person’s life. When asked if she would like her name put on a list for the new program, Breanne’s answer was immediate. “I was like, ‘Double-star my name!'” she says.

Breanne knew she needed the Pain Rehabilitation Center, given that her life was defined by chronic pain. She had bravely tried to put forth effort to do some of the normal activities her friends enjoyed, such as dances and outings, but it took too much out of her.

“It was to the detriment of my health,” she says. “I remember times when I just said to myself, ‘OK, I feel awful, but I’m going to the dance.’ Then the next day I would be in the emergency room.”


“It was like we had a member of the family that was living here, but not existing with us.”

Laura Spence

Breanne’s mother, Laura, also was eager for Breanne to have an opportunity to try something new, as nothing had worked to ease her daughter’s pain.

“It was like we had a member of the family that was living here, but not existing with us,” Laura says. Laura’s concern for Breanne spurred her to spend considerable time researching possible answers to ease the persistent pain. She recalls thinking: “This can’t be as good as her life is going to be.”

In April 2016, Breanne received the call from Mayo Clinic that the family had been waiting for. Cynthia Townsend, Ph.D., the new clinical director for the Pain Rehabilitation Center, and her team were on board, and the Pain Rehabilitation Center program was open. For Breanne, it was the break she had hoped for — a way to finally have her pain addressed. She was the first patient to be enrolled in the program.

Focused on renewal

Breanne SpenceBreanne started her three-week outpatient program at the Pain Rehabilitation Center in July 2016. “It was the best thing ever!” she says.

Dr. Townsend clarifies that many people think of pain management as dealing with painkillers and muscle relaxants. “That’s not in line with what the research shows in terms of what is the best management of chronic pain in the long term,” she says.

Mayo’s Pain Rehabilitation Center focuses on helping people restore function in their lives and recognize what brings them joy. As opposed to increasing doses of medications, the program emphasizes aspects of life that people value most, such as family, work or hobbies.

Everyone who joins the Pain Rehabilitation Center program has chronic pain. Dr. Townsend and her team never discount anyone’s pain. They understand that the pain controls their patients’ lives. Dr. Townsend notes that these patients often are out of options and have exhausted all medications, surgeries and other procedures.

A key element of Mayo Clinic’s Pain Rehabilitation Center is the team approach. The center’s integrated team includes pain medicine specialists, psychologists, nurses, physical therapists and occupational therapists. All have experience working with people with chronic pain, and they can provide care simultaneously during the program. The team regularly meets to collaborate on each patient’s treatment plan and share progress updates.

During the course of the program, participants learn a variety of ways to manage their pain. The program includes increasing physical activity, stretching, working smarter (not harder), physical therapy, nutrition, coping skills, and getting stronger in a way that calms the nervous system, rather than aggravating it.

Recovered freedom

Breanne says the program was not only a bonus for her, but also for her family. Life in the Spence home was not a happy place when Breanne retreated to her room in pain. Breanne and her sister, Jessica, who had been best friends, fought. Enjoying family time together became difficult.

Jessica says that finally learning at the program about the harsh reality Breanne was experiencing with her pain was a wake-up call. And as the Pain Rehabilitation Center program progressed, normal life for Breanne and her family started to reappear. Breanne would talk excitedly about her success at the center. She became more comfortable speaking in front of other people again. Breanne and Jessica began enjoying more time together.

“Breanne would start coming out of her room,” Laura says. “Her demeanor was changing.”

For Dr. Townsend, it’s rewarding to witness positive changes in families’ lives and see the renewed twinkle in patients’ eyes. “You can see a ripple effect when the patient loans out their hope to other people who were demoralized from what pain has contributed to their lives,” she says.


“The program helped me step up and take the reins of my life.”

Breanne Spence

Now 25, Breanne has reclaimed much of what she had lost.

“Before the Pain Rehabilitation Center experience, I was withdrawn from family, friends and my life. I was too afraid to take chances. I refused to get my driver’s license. I was on probation at Arizona State University,” she says. “I became the secondary character in my own story. I shut down.”

Today, all that has changed. Breanne drives a car without fear, has made the dean’s list at ASU twice, and has rekindled many relationships.

“The program helped me step up and take the reins of my life,” she says.

Learn more about Breanne’s treatment at the Pain Rehabilitation Center in this video:

 


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Mon, Jan 14 10:27am · Heart Surgery Puts Sarah Bopp Back in the Race

When Sarah Bopp began having shortness of breath and chest pain, she was surprised to learn that the problem was a heart condition that could have taken her life. But now open-heart surgery at Mayo Clinic has the 29-year-old back in competition and more fit than ever.

When Sarah Bopp began having shortness of breath and chest pain, she was surprised to learn that the problem was a heart condition that could have taken her life. But now open-heart surgery at Mayo Clinic has the 29-year-old back in competition and more fit than ever.


Sarah Bopp has been a competitive swimmer since she was 7. A spirited competitor, she’s even taken on several challenging open-water races. But the 1.2-mile swim she completed from Alcatraz Island to San Francisco’s Fisherman’s Wharf in 2018 was much more than a race. It was a celebration of Sarah’s recovery from the open-heart surgery she’d had just seven months earlier.

“I hadn’t done an open swim in a while, and I was itching to do some kind of big race to celebrate my new health,” Sarah says. “We’ve all heard the stories of people escaping from Alcatraz. This was symbolic of my escape from dying.”

An exhausting condition

A little more than a year earlier, the physically active Arcata, California, resident, began having palpitations, a racing heart rate and chest pain.

“I started feeling very exerted going up the stairs,” Sarah says. “I would tell people there was someone sitting on my chest all the time, and I was short of breath.”

She went to see a local cardiologist who performed an echocardiogram. That’s when Sarah learned she had hypertrophic cardiomyopathy, a disease usually caused by gene mutations in which the heart muscle becomes abnormally thick. Hypertrophic cardiomyopathy affects approximately 1 in 500 people. The disease can be deadly, as it may trigger sudden cardiac arrest, particularly in young athletes like Sarah.

Sarah was prescribed several medications, including beta blockers and calcium channel blockers, to relax her heart muscle and decrease obstruction within the cavity of her heart. But she found the side effects from the medication hard to tolerate. Sarah saw two other cardiologists who changed her medications, but she still didn’t get relief. Although she felt extremely fatigued, Sarah kept pushing herself physically — until she broke her foot in June 2017.

“That probably saved my life because I stopped running,” Sarah says. “It was a sign from the universe to slow down because I was almost to the point where I could have died from all the exertion.”

A successful surgery

Then Sarah found another way forward. A consult with a cardiologist in San Francisco revealed she was a good candidate for surgery to treat her condition. The cardiologist called Hartzell Schaff, M.D. at Mayo Clinic’s Rochester campus to schedule an open-heart procedure known as a septal myectomy. During this procedure, a surgeon removes part of the thickened heart muscle that’s causing an obstruction.

Sarah met with Dr. Schaff the day before her surgery, on Feb. 20, 2018.


“I was comfortable with [Dr. Schaff]. I could tell he was an experienced cardiac surgeon who knew a lot about my condition.”

Sarah Bopp

“I was comfortable with him. I could tell he was an experienced cardiac surgeon who knew a lot about my condition,” Sarah says. “He looked at my test results and confirmed what I had been telling many of my other doctors all along: that I needed surgery. I felt validated. It was huge.”

The surgery Sarah needed isn’t common. But Mayo Clinic has experience with it that few other health care organizations do.

“We have performed more than 3,300 septal myectomy procedures and currently do over 200 each year,” Dr. Schaff says. “If you look at all medical centers around the country, the median number of cases performed is one or two per year.”

That expertise served Sarah well, and her surgery went smoothly. Afterward, she remained in the hospital for five nights. Then she began cardiac rehabilitation. In 10 days, she was riding an exercise bike.

A rejuvenating race

After completing six months of rehabilitation at Mayo Clinic, Sarah tackled the swim from Alcatraz to San Francisco, competing against 700 other people.

“Being in the water was invigorating,” Sarah says. “I felt alive again.”

She finished the race in the top 25 percent of participants. Afterward, she emailed Dr. Schaff a photo of herself with her medal.


“I wouldn’t have had the same quality of life if I’d gone somewhere besides Mayo.”

Sarah Bopp

“I was delighted,” Dr. Schaff says. “This is evidence that you can live a normal life and have normal exercise capacity after the operation.”

Today, Sarah no longer needs any medications, and her focus is on the future as she looks to start her own business. She’s exercising regularly and excited about all the possibilities that lie ahead, grateful for the expert care she received to treat her heart condition.

“I felt really comfortable at Mayo Clinic. The care is very comprehensive,” Sarah says. “Life is valuable. I wouldn’t have had the same quality of life if I’d gone somewhere besides Mayo.”


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Wed, Jan 9 5:56pm · Using the Art of Medicine to Overcome Fear of Surgery

For years, artist Jennifer Hunter harbored an intense fear of surgery and, as a result, she lived with chronic pain. But when the pain became debilitating, she decided to find a way to use her art to manage her anxiety.

For years, artist Jennifer Hunter harbored an intense fear of surgery and lived with chronic pain. When the pain became debilitating, she decided to find a way to use her art to manage her anxiety.


Jennifer Hunter uses art to express herself and identity with the world. It’s a tool that helps her process information and release emotion. It’s also the way she earns a living.

Just over two years ago, Jennifer’s artistic ability was in jeopardy. She experienced pain and numbness triggered by a combination of problems: deterioration and compression of one of the discs in her neck, bone spurs compressing her spine, and thoracic outlet syndrome. The discomfort became so severe she could no longer hold a paintbrush to canvas.

But Jennifer’s physical symptoms were only part of her dilemma. She held a deep-seated fear of surgery. Her distress about invasive medical intervention was rooted in childhood memories of procedures where she was given little or no explanation of what was happening and why.

“I became the kid who passed out at the dentist’s or doctor’s [office],” she says.

Jennifer’s neck problems stemmed from a car accident where she suffered whiplash. By 2000, she had a bulging disc in her spine due to the injury. She managed persistent neck and shoulder pain for nearly two decades with physical therapy and regular exercise. But in 2015, when her pain intensified and began radiating through her body and into her legs, Jennifer sought the advice of a surgeon.

“I had a choice: Face my fear or be disabled,” she says.

For almost a year, Jennifer looked for someone to treat her. But none of the five specialists she saw could offer her a surgical solution.

“I needed to be seen someplace that understood thoracic outlet syndrome, so I looked at Mayo Clinic because they treat it,” Jennifer says. “I looked for a surgeon who understood cervical [disc] issues and spinal deformities.”

Jennifer’s research led her to Jeremy Fogelson, M.D., in Mayo Clinic’s Department of Neurosurgery. In Dr. Fogelson, Jennifer found a surgeon who not only saw the benefit of a surgical treatment for her spinal compression, but a physician whose understanding and kindness kindled courage within Jennifer that helped her overcome her anxiety about surgery.

A creative path to treatment

From Jennifer’s first appointment with Dr. Fogelson in August 2016, art was an important component of her care.

“My art is kind of my identity,” Jennifer says. “It’s my response to the world and how I see things.”

Jennifer came into the meeting with one of her paintings to show Dr. Fogelson. “I said, ‘I need to hold my arm out to be able to do this,'” she recalls. “I really thought I would have to work hard to convince him to treat me, but he offered me surgery right off the bat.”


“I’m a person who’d been really scared of surgeons and spine surgery, but his personality — he was so down-to-earth and so kind and compassionate — put me right at ease.”

Jennifer Hunter

During the lengthy appointment, Dr. Fogelson listened as Jennifer explained her symptoms and situation. He also discussed the nature of the surgery that would restore her painting ability, and he answered questions about the treatment.

“I’m a person who’d been really scared of surgeons and spine surgery, but his personality — he was so down-to-earth and so kind and compassionate — put me right at ease,” Jennifer says.

Dr. Fogelson says his position at Mayo Clinic helps inspire trust in his patients.

“Having a lot of experience and a lot of colleagues with great medical knowledge and expertise, whose recommendations I can trust, allows me to have confidence when I’m meeting with patients and reviewing what I think is going to help them,” Dr. Fogelson explains.

For Jennifer to feel positive about the surgery and its outcome, she knew she would need to integrate art into the process. At the appointment, she told Dr. Fogelson about her fear of surgery. She said she wanted to be able to sketch him in order to trust him to operate on her spine.

“Drawing sketches played a big part of me facing my fears and my recovery,” Jennifer says.


“At Mayo, we do our best to stick to our primary value, ‘The needs of the patient come first,’ and every patient has different needs.”

Jeremy Fogelson, M.D.

When Jennifer first presented Dr. Fogelson with the idea of sketching and later painting him, he was hesitant but then agreed. Although the request was beyond the normal scope of duty, he understood that some patients require additional support, and it was within his capacity as a Mayo Clinic physician to grant her request.

“I did feel like doing these things for her would help her deal with the situation and help her feel comfortable, even though it was not really a standard practice,” Dr. Fogelson says. “At Mayo, we do our best to stick to our primary value, ‘The needs of the patient come first,’ and every patient has different needs.”

Healing art

In the weeks leading up to her surgery in November 2016, Jennifer turned photos she’d taken of Dr. Fogelson into sketches. When she returned to Mayo Clinic for the surgery, she thanked Dr. Fogelson for allowing her to sketch him during the previous weeks.

“I had to get my head to a place where all of it was going to be OK, and it was. The day of the surgery, I was fine,” Jennifer says. “I held his hand and looked him in his eyes and thanked him for helping me. I told him that his hands were saving my hands.”

During the diskectomy and spinal fusion, Dr. Fogelson removed what remained of Jennifer’s faulty disc, replaced it with cadaver bone, and fused together the two neighboring vertebrae. Because Jennifer opted to forgo metal pins with the fusion, she had to wear a neck brace for three months.

After Jennifer healed, she began to work on Dr. Fogelson’s watercolor portrait. The pain that had accompanied her for more than two decades was gone. It had been more than 18 months since she’d been able to paint, but the project kept her motivated.

“The painting of him was the first painting I’d done since he operated on me,” says Jennifer. “I was very inspired. I rested when I needed to rest, but the painting is at the level I expect of myself.”


“I had to get my head to a place where all of it was going to be OK, and it was. The day of the surgery, I was fine.”

Jennifer Hunter

Some days she worked just a few hours. Some days it was more. But every moment Jennifer spent on the painting was imbued with recovery.

“Everything is in that painting: overcoming this fear, his compassion and kindness,” says Jennifer, adding that it took her 3½ weeks to complete the work. “It means so much for me to be able to do that for him because he gave me my life back, and without him I wouldn’t be able to do my work.”

Jennifer’s condition doesn’t require regular follow-up appointments. But two years after her surgery, she returned to Mayo Clinic to present Dr. Fogelson with the painting.

“I don’t really like to look at myself, but I love it,” Dr. Fogelson says. “It’s really beautiful, and I think she did a wonderful job. She clearly put so much into it. The detail is incredible.”

Jennifer says the painting depicts the healing atmosphere that pervades Mayo Clinic.

“The medicine at Mayo is an art, and art is also medicine,” Jennifer says. “Everything in that experience — the compassion and the caring and the personal contact — all of that leads to healing. I knew I could trust my life with him, and that’s something you have to have when you get on the operating table.”


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Tue, Jan 8 7:00am · Prevailing Over Severe Form of Malaria

After a trip overseas, Hugo de Jager was gripped by fatigue, abdominal pain and severe headaches. The culprit was cerebral malaria. Although the diagnosis is uncommon, and the condition life-threatening, experts at Mayo Clinic worked together to help Hugo achieve a remarkable recovery.

After a trip overseas, Hugo de Jager was gripped by fatigue, abdominal pain and severe headaches. The culprit was cerebral malaria. Although the diagnosis is uncommon, and the condition life-threatening, experts at Mayo Clinic worked together to help Hugo achieve a remarkable recovery.


Hugo de Jager, a native of South Africa who now lives in St. Charles, Minnesota, savors the time he spends with his three sons. In his spare time, he also enjoys his hobby of making steel furniture and staircase railings with wood inlays. But for a time during 2018, all of that was in jeopardy.

After Hugo returned home from a hunting trip near Kruger National Park in South Africa in April, he started noticing fatigue and abdominal pain. He also developed terrible headaches.

“It felt like someone put a nail right between my eyes and ears and just left it there,” he says.

Eventually, the persistent pain prompted Hugo to seek medical care. Less than two weeks after his symptoms appeared, he went to the Department of Emergency Medicine at Mayo Clinic’s Rochester campus. Testing revealed Hugo had cerebral malaria — a serious illness than can lead to fatal swelling of the brain.

With the condition threatening his life, Hugo required care in an ICU from a multidisciplinary team of specialists in Critical Care, Infectious Diseases, Neurology, Pulmonary Medicine and Transfusion Medicine.

“He had a very severe illness which many people die from,” says Eelco Wijdicks, M.D., Ph.D., a Mayo Clinic neurologist who was part of Hugo’s care team. “The dedication of the entire team that treated him in the ICU made it possible for him to survive this.”

An alarming condition

Malaria is a disease caused by a parasite transmitted to humans through infected mosquitoes. It’s been nearly 70 years since the transmission of malaria was eliminated in the U.S. But more American hospitals are seeing patients with malaria as travelers return from parts of the world where the disease is still rampant. An estimated 1,500 people are hospitalized in the U.S. each year due to malaria, according to a study published in the American Journal of Tropical Medicine and Hygiene.

Cerebral malaria is a particularly dangerous form of the disease. It occurs when parasite-filled blood cells block small blood vessels to the brain. That can lead to brain swelling and brain damage, and can trigger seizures and coma.


“We were confronted with a disorder that has not been seen in Rochester for more than 20 years.”

Eelco Wijdicks, M.D., Ph.D.

When Hugo was diagnosed with cerebral malaria, a blood smear revealed he had a 24 percent parasite count in his blood.

“Anything over 10 percent is considered severe disease, which affects more organs,” says John Park, M.D., a critical care specialist who was one of the physicians overseeing Hugo’s care in the ICU.

In addition to debilitating symptoms, testing revealed Hugo had kidney and liver failure, as well as many small hemorrhages in his brain.

“We aren’t exactly sure why these microhemorrhages occur. But the greater concern was the brain swelling that may occur, which can be catastrophic,” Dr. Park says.

A veteran of several medical mission trips in Africa, Dr. Park says he had never seen a case of malaria as serious as Hugo’s. It was also an uncommon diagnosis to find back home.

“We were confronted with a disorder that has not been seen in Rochester for more than 20 years,” Dr. Wijdicks says.

A resourceful approach

After Hugo received the anti-malarial medication quinidine, the parasite count in his blood started to drop, but not quickly enough. His care team began discussing what more they could do. They decided to perform a procedure known as a red cell exchange.

“The procedure involved taking his red cells through a dialysis-like machine and transfusing him with fresh red cells,” Dr. Park says.

The treatment worked. Within 18 hours, Hugo’s parasite count went down to less than 1 percent.

“The red cell exchange is not something that’s typically done, but we wanted to be as aggressive as possible as early as possible to save his life,” Dr. Park says.

Although his condition was improving, Hugo still needed to remain in the ICU. Due to his kidney failure, he required dialysis, and a ventilator assisted with his breathing. His body temperature was regulated through an external cooling device.


“The red cell exchange is not something that’s typically done, but we wanted to be as aggressive as possible as early as possible to save his life.”

John Park, M.D.

“We wanted to make sure we avoided fever and tried to keep his body temperature normal to slightly lower in an attempt to protect his brain,” Dr. Park says.

Under sedation, Hugo’s brain began to heal, and so did his kidneys and liver. After three weeks in the ICU, he was transferred to a standard hospital unit, where he remained for another four weeks. After that, Hugo was able to go home.

A complete recovery

Looking back on the experience, Hugo is thankful for the expert care he received.

“Their biggest concern was injury to the brain. I was technically not supposed to walk out of there without permanent brain damage,” he says. “Dr. Wijdicks was there every day during my first week in the ICU and every couple of days during the last two weeks of my hospital stay, doing everything he could to ensure a complete recovery.”

Hugo also is grateful for the compassion his family received. During the seven weeks he was in the hospital, Hugo’s three young sons spent a great deal of time at their father’s bedside, and they benefitted from Mayo’s multidisciplinary approach to care, too.

“We had our child life service therapists come up to help them grasp the situation,” Dr. Park says. “They were able to explain at their level what was going on and why their dad had all these tubes in him.”

That was just one of many examples of the compassionate, patient-centered care Hugo has come to expect from Mayo Clinic.


“The doctors were really professional the way they discussed my injuries and my condition. And the whole health care team was so friendly and responsive.”

Hugo de Jager

“The doctors were really professional the way they discussed my injuries and my condition,” Hugo says. “And the whole health care team was so friendly and responsive.”

A few weeks after being discharged, Hugo came to visit Dr. Park in the same ICU where his journey started.

“It was a beautiful moment to see him in normal clothes, standing with one of his sons, and his mom at his side waving hello as I walked in,” Dr. Park says. “Even though his MRI did not look good initially, our aggressive and sensitive care — and not giving up on him in the face of significant challenges — made all the difference.”

With his harrowing medical ordeal behind him, Hugo says the time he spends with his children now is all the more meaningful.

“I’m grateful that I can still hug my kids and look forward to taking them fishing and enjoying my time with them,” Hugo says. “If you want to live, go to Mayo. That’s what we all say around here.”


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Mon, Jan 7 10:05am · Heart Surgery Re-energizes Gymnast

When she was diagnosed with a rare heart condition known as Ebstein anomaly, Dannika Mechtel came to Mayo Clinic for care. Surgery not only repaired her heart, it restored her vitality, so she can keep competing in the sport she loves.

When she was diagnosed with a rare heart condition known as Ebstein anomaly, Dannika Mechtel came to Mayo Clinic for care. Surgery not only repaired her heart, it restored her vitality, so she can keep competing in the sport she loves.


Those closest to her were the first to spot a change in Dannika Mechtel. But it wasn’t until the young gymnast’s balance beam scores began to drop that she started to see what others had been noticing. The high level of competitive energy Dannika typically displayed throughout her gymnastics meets was beginning to wane.

After a visit with her local physician, Dannika learned the surprising reason for her dwindling energy. She’d been born with Ebstein anomaly, and the rare congenital heart defect was beginning to take its toll.

The condition was robbing Dannika’s tricuspid valve — the valve between her heart’s right atrium and right ventricle — of its ability to function properly. Blood had begun to leak back through the abnormally formed valve. That forced Dannika’s heart to work harder to pump blood, and it triggered the uncharacteristic fatigue that was creeping into her gymnastic performances.

After discussing the diagnosis, Dannika’s physician explained that Dannika would need corrective surgery once the symptoms of the heart defect progressed to the point that they significantly disrupted her quality of life.


“For me, coming to Mayo helped make a bad experience better because I was surrounded by people who wanted to take care of me and people who did a really good job of doing that.”

Dannika Mechtel

That day came two years ago, when Dannika was 11. She and her family turned to Joseph Dearani, M.D., a cardiovascular surgeon at Mayo Clinic’s Rochester campus. “He’s so nice and so caring,” Dannika says of Dr. Dearani. “And also really funny.”

Dr. Dearani is well-versed and highly skilled in the specialized surgical techniques required to reverse the effects of Ebstein anomaly. Since he performed the surgery, Dannika says she’s experienced the health benefits of Dr. Dearani’s expertise firsthand.

“Everything’s good right now,” she says. “I feel like I’m pretty much back to normal and back to my old self.”

At some point in the future, it’s likely Dannika will need a second heart surgery to control the effects of her heart defect. When that time comes, she says she’ll be coming right back to Mayo Clinic.

“Mayo’s super-amazing. Everyone’s just so nice and so caring. They really go out of their way to make you feel special and to take really great care of you,” Dannika says. “For me, coming to Mayo helped make a bad experience better because I was surrounded by people who wanted to take care of me and people who did a really good job of doing that.”

Watch Dannika and Dr. Dearani discuss her heart surgery experience at Mayo Clinic in this video:


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