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1 day ago · Bring Him Now: Transplant Teams Bring Together 'Mayo Clinic at Its Finest' For Young Patient

When four-year-old Maksim Messerer’s kidney function declined suddenly and unexpectedly, surgical personnel from across Mayo Clinic promptly came together to perform his kidney transplant several weeks ahead of schedule.

When 4-year-old Maksim Messerer’s kidney function declined suddenly and unexpectedly, surgical staff from across Mayo Clinic quickly came together to perform his kidney transplant several weeks ahead of schedule.


New Year’s Eve is supposed to be a time of celebration and hope. But for Jeremiah and Rachael Messerer, Dec. 31, 2014, was anything but celebratory. As people around the world gathered to ring in the New Year, Jeremiah and Rachael were inside a pediatric intensive care unit in Minneapolis, Minnesota, with their young son, Maksim.

Admitted for severe lethargy and dehydration, Maksim quickly got worse instead of better. Doctors discovered he’d been infected with E. coli, which then suddenly progressed to hemolytic uremic syndrome and kidney failure.

“He began peritoneal dialysis the very next day,” Jeremiah says. “A week later he went into septic shock and was intubated. He was in a very critical state, and his doctors were very concerned.”

So were his parents. And that concern would only grow when Maksim was taken in for a major surgery of his abdomen, during which the majority of his large intestine was removed. “At that time he was also switched over to hemodialysis,” Jeremiah says.

After spending almost three months in the hospital, Maksim was allowed to go home. Over the next year, however, he’d return to the hospital three times a week for dialysis. And it was during this time that talk of a kidney transplant first began to take place.

“It seemed pretty obvious early in his recovery that a kidney transplant was going to be in his future,” Jeremiah says.

A search for the best fit

With that prognosis in mind, Jeremiah and Rachael began searching the country for the best transplant center for Maksim. It was a long, exhaustive process that eventually led them to two finalists, one of which was Mayo Clinic.

“After we did a transplant evaluation at Mayo, we had this really strong sense of the team there,” Jeremiah says. “They listened to all of our concerns and were willing to work with us and consider, collectively, what the best treatment plan was for Maksim going forward.”

What ultimately sold Jeremiah and Rachael on Mayo Clinic, however, was transplant surgeon Mikel Prieto, M.D. Jeremiah says the level of care and compassion shown to them by Dr. Prieto just minutes into their initial meeting together is what made them realize their search for a transplant center, and a transplant surgeon, had ended.


“We had this really strong sense of the team there. They listened to all of our concerns and were willing to work with us and consider, collectively, what the best treatment plan was for Maksim going forward.” — Jeremiah Messerer


“We’d seen a lot of doctors before coming to Mayo. Within 10 minutes of meeting Dr. Prieto, he handed us his card with his personal cell phone number on it,” Jeremiah says. “That’s the level of care and compassion he has for his patients.”

By the time of their meeting with Dr. Prieto, Jeremiah had already gone through a complete kidney donor evaluation at another health care facility that had determined he was a match for Maksim. When three days of testing at Mayo Clinic confirmed that, Jeremiah says he felt an instant wave of relief.

“It was just a massive sense of relief that when the time for a transplant came, we wouldn’t necessarily be scrounging to find a donor,” he says.

A sudden turn of events

With Jeremiah officially approved as the donor, Dr. Prieto scheduled Maksim’s kidney transplant for July 18, 2017. It could have happened sooner, but Rachael was due to give birth to the family’s third child in June. She’d wanted some time to recover before going down the transplant road with Maksim.

Unfortunately, those plans would all change. Initially, Maksim had required dialysis for 18 months after he was first admitted to the hospital in Minneapolis. Then, for no clear reason, his kidneys recovered just enough for his body to function without it. However, Maksim’s health care providers warned the family that wouldn’t last forever. It was only a matter of time before Maksim would again need dialysis. In late June 2017, as predicted, Maksim’s kidney function declined to the point that dialysis would be necessary.

Dr. [Carl] Cramer, who’s a pediatric transplant nephrologist here at Mayo Clinic, called me and said that Maksim wasn’t doing very well, and that his kidney function wasn’t going to last another three weeks,” Dr. Prieto says. “He said Maksim was going to need to start dialysis very soon.”

The only other option would be to move his transplant date up. There was just one problem. Dr. Cramer’s call came on a Monday, and Dr. Prieto was scheduled to be away for two-and-a-half weeks, starting later that same week. That didn’t stop him from putting Maksim’s needs first.

“All of this was scheduled to happen on July 18. But I was being told that Maksim wasn’t going to make it to July 18, so I said, ‘OK, let’s bring the family to Mayo Clinic now.’ This was in the evening,” Dr. Prieto says. “I said, ‘Let’s call the family and see if they’re willing to have their lives upended like this so suddenly.’ We called them and said, ‘If you can get here tomorrow, we can do Maksim’s transplant tomorrow.'”

After some brief discussion, Jeremiah and Rachael were in. “After praying and talking it over, we decided we’d like to move forward. The next morning we were on the road to Rochester by 9:30 a.m.”

A plan in place

Meanwhile, back at Mayo Clinic, plans were being made for their arrival. “It’s important to understand that when we first called the family, nothing had been scheduled,” Dr. Prieto says. “No operating rooms, no surgical teams … nothing.”

That all began to change with a call to Surgical Services manager Cheryl Christopherson.


“Everybody was so phenomenal and pulled together so well.” — Cheryl Christopherson


“Dr. Prieto always calls me when he’s made aware of a child who’s going to need a kidney transplant,” Christopherson says. “When he told me about Maksim, I knew I was going to need two operating rooms — one for Maksim and one for his dad.”

Cheryl told Dr. Prieto she could make that happen and began working the phone lines.

When four-year-old Maksim Messerer's kidney function declined suddenly and unexpectedly, surgical personnel from across Mayo Clinic promptly came together to perform his kidney transplant several weeks ahead of schedule.“Everybody was so phenomenal and pulled together so well,” she says. “I said, ‘Here’s the deal, we have this little guy, and we had his transplant scheduled. But we now have to do it today.’ And everybody was like, ‘OK. What do we need to do to help?'”

The answer to that question, Dr. Prieto says, was to come together as one Mayo Clinic with little to no warning.

“I got Saint Marys Hospital to give me two operating rooms, and they opened those up with no pre-planning. Then I had six or seven people from Methodist Hospital come with me to Saint Marys to do the procedures,” Dr. Prieto says. “We had to have something like 30 people involved in all of this. We had to have two anesthesia teams, two nursing teams, two operating room teams. We combined people from Methodist who work with me regularly on adults with people from Saint Marys who work regularly with kids. And we managed to put those two operating teams together within a few hours, so that when Maksim and his dad arrived, we’d be ready.”

And they were. “We got to Mayo Clinic around 11:30 a.m., and the admit desk was waiting for us by name,” Jeremiah says. “After we got there, they took us up into pre-op and put Maksim and me in adjacent rooms. Then it was a flurry of pre-op activity from there. I was off to the operating room within an hour to an hour and a half of getting to Rochester.”

A display of excellence

That’s when Dr. Prieto and his surgical teams took over. “I did the surgery on Jeremiah starting around 1:30 p.m.,” he says. “Then I did the transplant on Maksim. We were done with everything by 6:30 that night. They both did great.”

Most importantly, they both continue to do well, which is a result Jeremiah and Rachael could not be more thankful for.

“We really can’t express our gratitude for how quickly this all came together,” Jeremiah says. “We feel really blessed that everything worked out the way that it did because we know it was the right thing for Maksim.”


“My first call to the operating room was made that same morning to tell them that I’d like to do this. And they said yes. We were then able to put together a team of 30 people to get it all done. That, to me, is Mayo Clinic at its finest.”  — Mikel Prieto, M.D.


Everything worked out the way that it did, Dr. Prieto says, because the only interest being considered throughout it all was Maksim’s.

“To put together two operating teams from basically nothing … my first call to the operating room was made that same morning to tell them that I’d like to do this,” Dr. Prieto says. “And they said yes. We were then able to put together a team of 30 people to get it all done. That, to me, is Mayo Clinic at its finest.”

That’s a sentiment with which Dr. Cramer wholeheartedly agrees.

“Anywhere else, they would have put Maksim on dialysis and just waited for the date of the transplant,” he says. “That would have definitely been the path of least resistance for us, too. But we felt that if we were able to avoid all of that, then that would certainly be in his best interest.”


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2 days ago · Lifestyle Changes Yield Positive Results for Wisconsin Woman With Diabetes

When Debbie Hundley learned she had diabetes and realized what it was doing to her body, she was determined to make the adjustments needed to get the disease under control and keep it that way.

When Debbie Hundley learned she had diabetes and realized what it was doing to her body, she was determined to make the adjustments needed to get the disease under control and keep it that way.


For Debbie Hundley, the shift was gradual. Life got busy. She let things go, and before she knew it, her energy level was at an all-time low.

“I didn’t pay attention to the changes in myself,” says Debbie, a resident of Barron, Wisconsin. “I kept telling people I was so extremely tired, but I wasn’t connecting that to anything. I would go into work and say, ‘I just feel like I’ve been drugged.’ I could hardly get myself out of bed in the morning.”

The mystery was solved at her annual physical exam, Debbie says. “That’s when the lab work discovered the diabetes.”

Support for better health

Fatigue is one of the telltale symptoms of diabetes, a disease that affects how the body uses blood sugar. Inactivity and excess weight increase a person’s risk of developing Type 2 diabetes, the kind Debbie has.

At the time of her physical, the results of Debbie’s A1C test — a common blood test to diagnose diabetes — was 7.3 percent. Levels of 6.5 percent or above indicate diabetes. Her physician quickly connected her with Louise Wanner, a diabetes educator at Mayo Clinic Health System – Northland in Barron. Wanner explained to Debbie the effect diabetes could have on her body, how to use a glucose meter to test blood sugar, and what to do if her blood sugar levels were too high or low.


“Debbie decided she wanted to make some changes. Her diagnosis was the instigator she needed to take better care of herself, and she did.” — Louise Wanner


“Initially, our goals are to provide awareness of what diabetes can do and how it physically affects your body and lifestyle,” says Wanner, noting she typically meets with patients three times with a phone call in between. “Debbie decided she wanted to make some changes. Her diagnosis was the instigator she needed to take better care of herself, and she did.”

Change for good

In a matter of months, Debbie shed 70 pounds and brought her A1C level down to a much safer 5.3 percent. She attributes her rapid success to a combination of diet and exercise changes, along with diabetes medication.

“I don’t say it’s a diet. It’s a lifestyle change,” says Debbie, who reports feeling more energetic and “100 percent better.”

“I eat healthier. I watch my portion sizes. I’ve cut out high-carb foods and a lot of sweets. Basically, I’ve changed my diet to accommodate healthier choices,” she says. “I’ve had a lot of support from my family and co-workers, and that’s extremely helpful.”


“People say, ‘How are you going to keep it up?’ But I really don’t feel deprived or that it’s work. I’ve embraced it. That’s the way it is, and that’s the way it’s going to stay.” — Debbie Hundley


Debbie also has incorporated exercise into her routines, walking a minimum of two to three times a week. She says she soon hopes to wean herself off the diabetes medication.

“My goal is to be medication-free,” says Debbie, who pledges to maintain her healthy new habits long term.

“People say, ‘How are you going to keep it up?’ but I really don’t feel deprived or that it’s work,” she says. “I’ve embraced it. That’s the way it is, and that’s the way it’s going to stay.”

Debbie appreciates Wanner’s encouragement and the support she’s found through Diabetes Education.

“You need that when you’re first starting out,” she says. “It’s just been very helpful. If there are any questions I have, I won’t hesitate to call her and ask.”


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5 days ago · Living-Donor Kidney Transplant Cements Brothers' Bond

Always close growing up, a successful kidney donation and transplant strengthened the connection between siblings Jim Von Holtum and Greg Vaske.

Always close growing up, a successful kidney donation and transplant strengthened the connection between siblings Jim Von Holtum and Greg Vaske.


Jim Von Holtum is the third-youngest child, and the youngest boy, in a mixed family of eight brothers and sisters. His half-brother Greg Vaske was already 13 years old when his baby brother was born. Greg was off to college by the time Jim was old enough to start kindergarten in Worthington, Minnesota, where they grew up.

Still, the two boys shared a special connection. They had the same sense of humor and the same laid-back attitude. They both had an interest in sports. Greg played a lot of fast-pitch softball, and Jim loved to tag along. He served as bat boy and traveled with the team when they had tournaments out of town. The brothers also spent time fishing together. When Jim was in high school, he was the main babysitter for Greg’s children.

“In a big family where everyone gets along so well, you don’t have a favorite. But you do tend to have more in common with some than others,” Jim says. “That was just always the case with Greg and me.”

Five years ago, the brothers’ bond got even stronger when Jim found himself in need of a kidney transplant. Greg was a match, and a successful living-donor kidney transplant at Mayo Clinic gave the siblings an experience they now both treasure.

The invincibility of youth

Jim was 33 when he first experienced trouble with his kidney. A bout of illness and severe dehydration sent him to the hospital, where an MRI showed cysts in his kidney. Doctors recommended Jim follow up with a urologist.

But as is the case with many men in their 20s and 30s, Jim believed he was invincible. Instead of seeing a urologist, Jim worked on getting himself rehydrated, started to feel better and went back to life as usual.

“Young and dumb is a really good way to describe my attitude at the time,” Jim says. “I thought, ‘It can’t be as serious as what they’re saying. I’ll be fine.'”


“Young and dumb is a really good way to describe my attitude at the time. I thought, ‘It can’t be as serious as what they’re saying. I’ll be fine.'” — Jim Von Holtum


He wasn’t fine, but it would be a few years before he realized just how sick he was. It wasn’t until 2008 that a routine screening as part of a life insurance application identified what Jim describes as “astronomically high” blood pressure. That scared him enough to prompt a return visit to his doctor, where he was diagnosed with polycystic kidney disease.

After that, Jim saw a specialist and had regular meetings with a urologist. When his kidney function deteriorated enough that he had to consider dialysis, doctors sent him to Mayo Clinic’s Rochester campus for a consultation. Jim never underwent dialysis but continued to visit Mayo for about a year and a half, until he was eligible for a transplant.

A wealth of potential donors

Finding a donor might have been the easiest part of the transplant process for Jim. All seven of his brothers and sisters stepped forward to be tested. At the outset, Jim was certain one of his sisters, who is close in age to Jim and has similar physical traits, would be the best match. However, Jim learned those factors are not as meaningful as he thought when it comes to transplant compatibility.


“That we only have one parent in common and were that compatible is nothing short of a miracle to me.” — Jim Von Holtum


“I think she was actually one of the least compatible matches out of the family,” Jim says.

It turned out Greg was a better fit. Despite their age difference and having only one shared biological parent, a transplant evaluation showed that Greg was the best match for Jim.

“That we only have one parent in common and were that compatible is nothing short of a miracle to me,” Jim says.

A newfound state of health 

The kidney donation and transplant surgeries went smoothly for both Greg and Jim. Afterward, Jim’s care team told him he would feel better quickly. But he didn’t realize until he had recovered just how much his ailing kidney had been slowing him down. Though he was an active kid growing up, aches and weariness had become part of his routine over the years. He had blamed these symptoms on getting older.

“Over the years, my insomnia had become miserable,” he says. “I couldn’t sleep at all. That was just a daily occurrence and part of my daily life. I didn’t know it could be any different for me.”

Immediately after his transplant, Jim stayed at the Gift of Life Transplant House, a Rochester facility that gives transplant patients and their caregivers an affordable place to live while they undergo treatment. At the house, patients are surrounded by other people going through the same experience. It was a resource Jim truly appreciated.


“I go back to Worthington and people say, ‘You’re looking good.’ Usually, when people say you look good it’s because you’ve lost weight, but not in my case!” — Jim Von Holtum


Since his transplant, Jim is a new man. He quickly returned to a level of health he had all but forgotten. He has more energy and feels better. With no noticeable signs or lingering side effects of his kidney disease or the transplant, Jim now stays active by playing basketball and golf.

His renewed health and vigor shows in other ways, too. At more than six-foot-four, Jim had never been able to put on weight. On the day of his transplant, he weighed 168 pounds. These days, he hovers around 212 pounds. His face is no longer gaunt, and for the first time in his life, he has been able to gain and maintain a healthy weight.

“It’s great,” he says. “I go back to Worthington and people say, ‘You’re looking good.’ Usually, when people say you look good it’s because you’ve lost weight, but not in my case!”

For Greg, there was never any question he would donate his kidney to his brother. He’d have done the same for any of his siblings, he says, and he’s confident they would do the same for him. Greg had to take a month off work following the transplant. But he says if he didn’t have the scar, he wouldn’t know he’d ever had surgery.

A connection across the miles

Jim and Greg are separated by many miles these days. Jim is a bank vice-president in the Brainerd, Minnesota, area, and Greg, a railroad conductor, lives in Omaha, Nebraska. But that hasn’t weakened their bond.

And while there were jokes before the surgery about what the transplant might mean for the brothers’ respective golf games, they always took the transplant itself seriously.

“I was hoping he’d take my left slice away from me,” Greg says. “He hits it straight, and I still slice it.”

The brothers are still close and talk regularly. If anything’s changed, Jim says, it’s that they make more of an effort to tell each other how they feel.

“I would say we’re both better at saying, ‘I love you,’ than we were before,” he says. “You’re just more conscious of it when you go through something like that. It’s more of a conscious effort on both parts that you know you need to do it, and that you can’t let things go unsaid.”


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Fri, Oct 13 4:59pm · Outdoors Enthusiast Uses Exercise to Curb Early Onset Parkinson's Disease

 Mountain biker, hiker and skier Robert Berlin was just 53 when he began experiencing symptoms of Parkinson's disease. Today, thanks to health care tailored to his lifestyle, he remains active and optimistic.

Mountain biker, hiker and skier Robert Berlin, M.D., was just 53 when he began experiencing symptoms of Parkinson’s disease. Today, thanks to health care tailored to his lifestyle, he remains active and optimistic.


Dr. Robert Berlin can tick off a nearly 50-mile bicycle ride in a single afternoon. He can climb a 1600-foot-mountain and ski back down. Each day he performs about 90 minutes of cardiovascular exercise. And he does it all while dealing with early onset Parkinson’s disease.

With help and guidance from his Mayo Clinic neurologist Rodolfo Savica, M.D., Ph.D., Robert has been able to take tailored doses of medication to suppress the condition’s symptoms and maintain the avid athleticism that’s integral to his psyche.

“Bob is a person who if you saw walking around, you would not say he has Parkinson’s disease,” says Dr. Savica, who has been part of Robert’s care team since 2014. “Bob is an avid athlete and really likes to be at 100 percent. We want him to be as close to 100 percent as possible. I want him to have as much ability and function as he can.”

Activity and a positive outlook

For Robert, exercise not only allows him to remain physically strong, but it bolsters his emotional and mental fortitude to fight the disease, which is normally diagnosed at about the age of 71.

“Trying to maintain doing the things that make you happy is a good approach to maintaining a positive outlook,” Robert says. “Besides the medication, I think you’ve got to keep moving. That’s what I do. I find there’s some peace in that, and I think it’s a healthy thing to do.”

In fact, research studies show exercise may actually curb the effects of Parkinson’s disease.


“… Bob is an inspiration to many. He’s putting forth all of the effort he can by following our direction trying to fight the disease.” — Rodolfo Savica, M.D., Ph.D.


“Theories show exercise is crucial for the mental part of Parkinson’s disease, and some theories suggest that with exercise the neurons that are damaged can build up new connections within the cortex,” Dr. Savica says.

Although Robert has bad days sprinkled in with the good, his commitment to an active lifestyle serves him well.

“The disease definitely will progress, but the beauty of Bob is that he’s really buying in to exercising. He’s buying into being mentally active,” Dr. Savica adds. “That’s why I feel Bob is an inspiration to many. He’s putting forth all of the effort he can by following our direction trying to fight the disease.”

Depression, denial and diagnosis

 A resident of the resort town of Jackson Hole, Wyoming, Robert was head of the radiology department in the community’s hospital for more than 20 years. The area is known for outdoor recreational activities. Robert, an avid mountain biker and skier, took advantage of the area’s topography. But in the summer of 2013, he began to feel depressed.

According to the National Institutes of Health, between 40 to 50 percent of people affected by Parkinson’s disease experience depression. In retrospect, says Robert, depression was his first noticeable symptom of the disease.

“I took a trip back East to see my sister and a good friend of mine from medical school. I remember very matter-of-factly thinking, ‘This is going to be the last trip I’m going to take,'” he says. “While working in the radiology department, I was very emotionally affected when reading patients’ examinations containing pathological findings.”


“I received treatment for all sorts of things, but the one thing they weren’t treating me for was Parkinson’s. My personal denial resulted in a delay of my diagnosis.” — Robert Berlin


Soon after, physical problems began appearing. He sought help from a neurologist, who recommended Robert visit a neuro-ophthalmologist to undergo testing for a motion disorder called progressive supra-nuclear palsy, or PSP. His neurologist also suggested Robert visit a movement disorder specialist. That physician turned out to be Dr. Savica, who at the time practiced at the University of Utah. Robert was advised to consult with a neurosurgeon as well, to discuss a pre-existing case of cervical stenosis. Lastly, the neurologist suggested Robert visit a psychiatrist to manage his depression.

The neuro-ophthalmologist ruled out PSP. In June 2014, Robert’s neurosurgeon performed cervical fusion to help with the cervical stenosis. His psychiatrist prescribed multiple medications.

“I received treatment for all sorts of things, but the one thing they weren’t treating me for was Parkinson’s,” Robert says. “My personal denial resulted in a delay of my diagnosis.”

With symptoms such as tremors and lack of coordination progressing, Robert says he could no longer work. His wife, who is an internist, suggested he go to Mayo Clinic for a definitive diagnosis.

Drs. Rodolfo Savica and Robert Berlin.

Robert made an appointment to be seen in the Department of Neurology at Mayo Clinic’s Rochester campus. He was scheduled for an exam with J. Eric Ahlskog, M.D., Ph.D. After a thorough assessment of Robert’s condition, Dr. Ahlskog was clear and direct about his diagnosis.

“It was so evident to him,” Robert says. “He literally shook my wrist and said, ‘You have Parkinson’s.'”

Robert asked Dr. Ahlskog if there was any other testing that could be done to confirm the diagnosis. He suggested Robert take a dose of the Parkinson’s medication carbidopa-levodopa. If it helped ease his symptoms, that would mean Robert had the disease.

“I took one pill, and an hour later I definitely felt better,” he says. “There was no doubt about it.”

Rather than feeling despair about having Parkinson’s disease, the diagnosis brought Robert relief.

“I needed to figure out what was happening so I could get moving forward because I was pretty rapidly deteriorating,” he says. “In addition to the carbidopa-levodopa, I needed antidepressant medication to alleviate severe depression.”

Teamwork, treatment and triumph

 With his new diagnosis, Robert returned to Jackson Hole and made an appointment with Dr. Savica to monitor and tailor optimal medical treatment for his Parkinson’s.

“When I met him, I knew right way that he was going to be my Parkinson’s doctor for the rest of my life,” Robert says. “I wanted someone who was empathetic, caring and to whom I was not just another number. Additionally, I desired someone on the leading edge of Parkinson’s treatment. Dr. Savica does superb research of all the new developments in the field. His whole approach and commitment to me as a patient has been incredible.”


“Dr. Savica does superb research of all the new developments in the field. His whole approach and commitment to me as a patient has been incredible.” — Robert Berlin


When Dr. Savica moved to Rochester, Minnesota, to join Mayo Clinic, Robert says it was an easy decision to stay with him. Dr. Savica’s personalized medical treatment has enabled Robert to maintain his highly active lifestyle.

“I hoped for a high level of function with no tremors and good motion enabling me to do the physical things that I like,” Robert says.

Robert stays in contact with Dr. Savica, making follow-up visits to Minnesota, and phone calls and emails as needed to manage his medications and symptoms. “Rodolfo has been so incredibly responsive,” Robert says. Even when he has an urgent issue in the middle of the night, he says, “I’ll get a response before breakfast. I feel like I have an outstanding, extremely intelligent physician who is in charge of my care. He also considers me a good friend and treats me as a friend.”

Dr. Savica says the feeling is mutual. As his friend, Dr. Savica will continue to support Robert both clinically and personally to help him keep the quality of life he wants.

“It’s crucial to say to any patient that I want you to do well. I want you to feel good, and I want to give you everything in my medical expertise,” Dr. Savica says.

With tailor-made treatment, Robert says he’ll continue engaging in exercise for as long as possible.

“There is more to life than just physical things, and there’s no doubt that eventually our physical bodies deteriorate,” he says. “But personally, I’ve always found great happiness in being physical. Exercise of any intensity, from a long, difficult bike ride to walking the dog with my wife, brings joy into my life.”


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Thu, Oct 12 1:27pm · Ankle Surgery Gives Swimmer Another Chance to Pursue Her Dreams

Swimming means the world to Alexis "Lexi" Riley.

Frustrated by ongoing pain, Lexi Riley considered giving up on swimming — a sport she loves. But ankle surgery at Mayo Clinic solved the problem, and now Lexi is thrilled to be back in the pool.


Swimming means the world to Alexis “Lexi” Riley. But when an ankle injury left her with significant ongoing pain and made swimming difficult, she wasn’t sure if she would be able to compete again, and she was devastated.

“I became extremely discouraged with the whole sport,” she says. “I wasn’t sure if I even wanted to continue swimming anymore.”

But then Lexi’s family sought care for her at Mayo Clinic’s Florida campus with orthopedic surgeon Glenn Shi, M.D. And that has made all the difference. Today, Lexi is back in the pool, working hard and swimming at the collegiate level.

“Without Dr. Shi, she could not have done this. He was very much thinking long-term. We appreciate that because this is not something we want to do again,” says Lexi’s mom, Sara Dipaolo. “He had such a calming presence. You just trust him. If I were an athlete, I would go to him.”

Troubling symptoms

Lexi’s connection to Mayo Clinic began at an early age when her mom established care at Beaches Primary Care Center in Jacksonville Beach, Florida. With a love for soccer and flag football, Lexi began seeing Jennifer Maynard, M.D., a family practitioner with a specialty in sports medicine.

After a concussion when she was 11 and another a short time later, Lexi was forced to seek out noncontact pursuits. She took up biking and running, though ultimately swimming became her focus. So much so that she set a goal of swimming in college and dreamed of making it to the Olympics.


“Without Dr. Shi, she could not have done this. He was very much thinking long-term.” — Sara Dipaolo


But Lexi soon realized something else was putting her dreams at risk. Over the years, Lexi had bouts of pain when kicking in the pool. After a visit with a local orthopedist, Lexi learned that she had a rare ankle condition known as a peroneal tendon subluxation. The condition develops when the structures that form and support the tunnel housing the peroneal muscles of the leg are damaged or injured. This causes the peroneal tendons to snap out of place.

Lexi underwent several surgeries at another local hospital in attempt to correct the disorder. After a surgery in 2013, Lexi was able to participate on her high school swim team for three years without any issues.

Debilitating pain takes hold

The relief from pain was, unfortunately, not permanent. In January 2016, Lexi rolled her right ankle, and the condition resurfaced.

“I felt a sharp pain when the tendon would snap, and walking was very painful,” Lexi says. “It started hurting worse and worse over the summer. It was keeping me up at night because it was so painful.”

Still the dedicated athlete continued her two practices a day, six times a week. But her discomfort got worse. In time, she couldn’t kick or push off the wall while she was swimming, due to the pain. At that point, she was certain her swimming career was over.

That’s when Lexi and her family turned to the expertise of Mayo Clinic and Dr. Shi. He confirmed that the bony shape of Lexi’s ankle was causing the ongoing problem. The earlier procedures hadn’t addressed the fact that due to its shape, her ankle didn’t have enough space for the tendons. That was having a direct effect on her performance in the pool.

“When swimmers kick, they are placed in position where the tendons are prone to subluxation,” Dr. Shi explains. “The pain and inflammation affects their ability to produce a powerful kick.”

In August 2016, Lexi underwent groove reconstruction surgery on her right ankle. During the two-hour procedure, Dr. Shi deepened the groove through which the tendons of the peroneal muscles pass, so they would stay in place.

“We go in and shave the bone to create space for the tendon, so it stabilizes,” Dr. Shi says.

Savoring victory

A few weeks after surgery, Lexi got back in the water. It was her senior year, and she dreamed of competing in the state swimming championship. To qualify, she’d need to participate in the district and regional competitions. With Dr. Shi’s blessing, she signed up to race in an October meet. Then in early November, Lexi swam in the regional competition.

“It was my first real meet when I was going full speed, and I qualified for the state competition,” Lexi says.

That competition was just a week later on Nov. 11. Lexi swam in the 400-free relay. Her performance helped her high school team win its 27th consecutive state title.

“For her to be on that relay was amazing. It was epic!” Sara says. “She burst into tears when she realized they won.”


“[Dr. Shi] knows what he’s doing. He’s very confident and kind. He was very supportive.” — Lexi Riley


“It was amazing when we realized we’d won, and it was the final event of my high school swimming career. It was a very awe-inspiring moment,” says Lexi, who adds that she is grateful to Dr. Shi for making her return to competitive swimming a reality.

“He knows what he’s doing,” she says. “He’s very confident and kind. He was very supportive.”

When Dr. Shi learned of the victory, even the doctor was impressed.

“She went above and beyond my expectations,” he says. “I am overjoyed.”

In December 2016, Dr. Shi performed the same groove reconstruction surgery on Lexi’s left ankle. Since then, Lexi has healed well. Now she’s on the swim team at the College of Wooster in Ohio. She’s looking forward to participating in the college’s conference championships and is working toward her goal of making the NCAA national championships.

Learn more about Lexi’s story in this video:



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Mon, Oct 9 9:50am · Effective Treatment for Advanced Breast Cancer Calls for Customized Care

Thirty-five-year old mother of three is amazed to find her cancer in remission thanks to her Mayo Clinic team's knowledge and individualized care.

Thirty-five-year old mother of three is amazed to find her cancer in remission thanks to her Mayo Clinic team’s knowledge and individualized care.


Amy Conlon arrived at Mayo Clinic’s Rochester campus in August 2016 without much hope. The 35-year-old breast cancer patient and mother of three envisioned a grim future for herself. She imagined that future would include a mastectomy and a year’s worth of chemotherapy and radiation therapy to fight off the stage 4 malignancy that had spread to her bones.

But after a meeting with Mayo Clinic physician Matthew Goetz, M.D., in Medical Oncology that lasted several hours, Amy’s outlook took a sharp turn.

“Given the time I’d spent with other health care professionals, I was like, ‘Oh, my gosh. This guy has given us his whole day,'” Amy says. “He was so thorough and gave us so much information. And the best part about it was that he truly got to know me and my family, and what would be best for my situation to determine my exact treatment plan. That’s what impressed me the most.”

And the treatment plan developed for her by Dr. Goetz, who leads Mayo Clinic’s Breast Cancer Research group and is a member of Mayo’s Breast Clinic, looked nothing like the traditional plan Amy thought she was going to go through. Instead, it included an oophorectomy to remove her ovaries and two pills: one that lowers estrogen and one that prevents resistance to estrogen-targeting medication.

There was no mastectomy. There was no infusion chemotherapy, and there was no radiation therapy. And just one year later, there is no cancer.

“At Mayo Clinic, our most important goal is to provide a customized treatment plan that is based on a deep understanding of the biology of the breast cancer, as well as additional personal factors that may alter drug response,” Dr. Goetz says. “We’re going to recommend treatment designed for you and customized for you that we expect to work.”

Innovative, individualized care

Discovering she had metastatic breast cancer was devastating, says Amy, who had an 8-month-old, a 5-year-old and a 9-year-old at the time of her diagnosis. But Dr. Goetz offered her a different perspective.

“As Dr. Goetz pointed out, people view stage 4 as a death sentence. But all stage 4 means is that the cancer has spread,” Amy says. “There are various places where it could’ve spread, and mine went to my bones. If it had gone to my organs, we might have been talking about a different thing.”

Physicians on Mayo’s breast care team strive to offer their patients customized care tailored to fit their needs.

“We try to match the right patients to the right therapies,” Dr. Goetz says. “When patients come to me, my goal is to figure out what are the characteristics that allow me to try to individualize the therapy for them.”


“We try to match the right patients to the right therapies. When patients come to me, my goal is to figure out what are the characteristics that allow me to try to individualize the therapy for them.” — Matthew Goetz, M.D.


The defining characteristic of Amy’s cancer was that it was dependent on estrogen. Drugs that target estrogen, such as tamoxifen and aromatase inhibitors, are considered a standard treatment for estrogen receptor positive breast cancer. But their benefit is limited, and breast cancer cells develop mechanisms to grow despite inhibition of estrogen, Dr. Goetz explains.

That’s where cyclin-dependent kinase 4/6, or CDK4/6, inhibitors come in. By blocking resistance to estrogen-targeted drugs, these inhibitors lead to higher tumor response rates and longer periods of cancer remission.

Another measure against the cancer is an injection Amy gets every three months to harden her bones. This works to prevent bone weakness and fractures, and helps keep the cancer from spreading. After just six months, Amy’s cancer receded significantly. Today, she enjoys a complete remission.

Informed, improved outcomes

The fact that her cancer has disappeared is amazing, Amy says. But the success of Amy’s treatment, which she will continue receiving until it is no longer effective, isn’t as surprising to Dr. Goetz.

“We are experiencing a new era in medicine, and within oncology in particular, where the pace of new knowledge and the integration of genomics into our practice have rapidly changed the way we practice. Practicing oncology in 2017 requires a deep understanding of the biology of the cancer,” Dr. Goetz says. “That deep understanding translates into knowledge that affects the outcome for the patients.”


“It’s not just enough to say, ‘We have what’s out here now.’ They do better. They’re constantly thinking about the next best thing.” — Amy Conlon


Her physicians’ insight and the minimal impact treatment has had on Amy’s life — she’s experienced only some hair thinning and mouth sores — has made her journey all the more remarkable.

“Their knowledge is absolutely amazing,” Amy says. “They put themselves out there to learn the next treatment, cure. It’s not just enough to say, ‘We have what’s out here now.’ They do better. They’re constantly thinking about the next best thing.”

And Mayo providers do all this while developing personal relationships with their patients, Amy adds.

“There are many people who go through that place on a monthly basis,” Amy says. “And to know they care about you and your family, that is nothing short of amazing.”


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Fri, Oct 6 11:32am · From Surviving to Thriving, Thanks to the Pain Rehabilitation Center

Marissa Koscielski's back injuries led to chronic pain that eventually forced her into a wheelchair. Participating in Mayo Clinic's pediatric pain rehabilitation program helped her overcome the pain and put her back on her feet.

Marissa Koscielski’s back injuries led to chronic pain that eventually forced her into a wheelchair. Participating in Mayo Clinic’s pediatric pain rehabilitation program helped her overcome the pain and put her back on her feet.


Marissa Koscielski leaped into the air on the steps of the Golden Dome at the University of Notre Dame. In a photo that captures the moment, Marissa wears a graduation cap and holds a diploma above her head. Her smile is bright, her legs bent in midair high above the steps.

Marissa had just earned a bachelor’s degree in mathematics from the prestigious university, which would have been reason enough to celebrate. But the leap represented so much more. Just five years earlier, Marissa was living with constant pain and had been told she might spend the rest of her life in a wheelchair. Back then, she couldn’t imagine walking, let alone jumping.

Then she discovered the pediatric pain rehabilitation program in the Pain Rehabilitation Center at Mayo Clinic, where she turned for help getting back on her feet again.

Landing in pain

Marissa’s journey to Mayo Clinic began the spring of her eighth grade year. Her gymnastics season was wrapping up, and Marissa’s coach had given the team a free day in the gym.

“I decided I was going to front tumble, and I kept falling,” she says. The falls hurt. But with a high tolerance for pain, and an athlete’s determination, she continued practicing. “I joked that I thought I’d broken my tailbone,” Marissa says.

It turned out that she had. X-rays also revealed fractures on both sides of her sacrum and multiple fractures in her lower spine, injuries she’d likely sustained earlier in the gymnastics season. The fractures were treated, but the pain in Marissa’s back persisted. That led her to doctor after doctor in her home state of Indiana. None could identify a reason for the continued pain. By the spring of Marissa’s ninth grade year, the pain had become so unbearable she left school and enrolled in an online education program. She’d become virtually homebound. That summer, her parents brought her to Mayo Clinic’s Rochester campus.


“It was great to meet kids the same age who really get what you’re going through.” — Marissa Koscielski


“At Mayo they started from scratch, trying to figure out what was going on,” Marissa says.

When her tests results came back, none revealed an answer. Marissa and her family went back to Indiana, where she started her second year of online education. The pain remained a constant companion. And gradually, a new and frightening symptom arose: Marissa began to lose feeling in her legs. By the end of her sophomore year, she had no control of her left leg. She was using a wheelchair, and doctors told her she might never leave it. Desperate for answers, Marissa’s family went back to Mayo Clinic.

“They ran more tests, and noticed a small spot on my MRI that had grown since the last test,” Marissa says. “They thought it might be a deep infection in my back and decided to do surgery to remove the mass.”

After the mass was removed, Marissa attended a six-week inpatient rehabilitation program at Mayo Clinic. When the program ended, she was still in pain, and she still couldn’t control her left leg. That’s when her care team told her about the pediatric pain rehabilitation program. She decided to enroll. 

Making strides

The pediatric pain rehabilitation program is a three-week, outpatient program for adolescents and their parents or guardians. It’s intense, with full days of physical, occupational and recreational therapy, as well as group therapy and lectures on stress management. There are separate lectures and group sessions for parents and guardians.

At first, Marissa was overwhelmed. “I thought, ‘How am I going to do this?'” she recalls. But she did whatever was asked of her. Before long she saw — and felt — results. “I started to get movement in my legs again.”

Over the course of the program, Marissa got stronger not only physically, but mentally as well. That’s by design, says Wendy Timm, a physical therapist who has been part of the program since it was piloted in 2008.


“We have kids come to the program in wheelchairs who leave walking or running. It’s thrilling to see.” — Wendy Timm


“The kids in the program have been dealing with pain for a long time and have often withdrawn from friends and activities,” she says. “Many of them are depressed when they come to us. They learn coping skills in the program. We introduce things like meditation and relaxation techniques to help them manage their pain.”

Participants also take inspiration from those around them. Admissions are staggered, which means there is always someone to look ahead to in the program. Those who are further along in their recovery encourage the newcomers.

“To a person, parents and kids all tell us what a difference the group support makes,” Timm says.

Marissa agrees. “It was great to meet kids the same age who really get what you’re going through.”

The program also includes mandatory social outings, such as group trips to go rock climbing, ice skating or to the mall.

“Many of these kids have become isolated, and part of what we do is help them learn to socialize again,” Timm says. “We want to get them back to who they were before pain took over.”

The approach works, as evidenced by the graduation speeches each participant gives before leaving the program.

“We have kids come to the program in wheelchairs who leave walking or running,” Timm says. “It’s thrilling to see.” And emotional, as well. “Parents cry. Kids cry. We cry,” she says. “It’s incredibly rewarding to be a part of.”

Racing ahead

Less than a week after she completed the program, Marissa returned to school for the first time in a year and a half. She graduated with her high school class, and four years later, from Notre Dame. She credits the program with helping her successfully navigate college life.

“I still follow the plan they set for me,” she says. It’s a plan that includes daily exercise and eight hours of sleep each night, habits that set her apart from many of her fellow students. “While my college career did not consist of wild behaviors, I believe I have grown far more than some of my peers physically, socially and mentally.”


“My health has improved so much over the past few years. This program is a hidden gem. It enabled me to go from being a survivor to living again.” — Marissa Koscielski


Today, Marissa is a graduate student in the university’s Esteem Graduate Program for technology and entrepreneurship. She’s eyeing a career in health care. “I want to help bring health and dignity back to patients,” she says. Her master’s project — creating a modified walker to be used in rehabilitation after amputations — will help her accomplish that goal. The design was inspired by her own experience using a modified walker at the Pain Rehabilitation Center.

Marissa has continued to move forward physically. Once she felt well enough to move again, she wasn’t content with walking. She’s become a runner, logging up to 8 miles at a time. She plans to enter her first road race soon.

“My health has improved so much over the past few years,” Marissa says. “This program is a hidden gem. It enabled me to go from being a survivor to living again.”


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Thu, Oct 5 3:02pm · Teen Navigates Ehlers-Danlos Syndrome With the Help of Clinical Genomics

After years of dealing with mysterious symptoms, Nicole Rickert was diagnosed with Ehlers-Danlos syndrome. Now she's working with her team at Mayo Clinic to get the care she needs to move forward into a healthy future.

After years of dealing with mysterious symptoms, Nicole Rickert was diagnosed with Ehlers-Danlos syndrome. Now she’s working with her team at Mayo Clinic to get the care she needs to move forward into a healthy future.


Nicole Rickert was only 13, and an active member of her junior high drill and dance teams in Dallas, when it became painfully evident that something was wrong.

“My back was hurting all the time, and I couldn’t stand up straight,” she says.

That limitation made her a “bad dancer,” she laments. But it was just a hint of the complicated health journey Nicole would endure that began with a diagnosis of scoliosis and escalated to include more health issues that would put her young life on hold.

After enduring years of symptoms her health care providers couldn’t explain, Nicole, who is now 19, took charge of the situation and began searching for answers on her own. She was convinced she had found the source of her problems when she discovered information about Ehlers-Danlos syndrome — a connective tissue disorder that can trigger a host of medical problems. She was right.

Diagnosed with Ehlers-Danlos, Nicole went to Mayo Clinic to receive care and learn more about her condition. Although she still has more treatment to come, Nicole is optimistic about the prospect of a positive outcome.

“My surgeons have really high hopes for me, and I’m young,” she says. “I think I’ll be successful, and I’ll get a new lease on life.”

Mounting obstacles

When Nicole started having back pain, she assumed a solution was within her control.

“Everyone told me my back muscles were weak, and that I needed to do exercises,” she says.

So Nicole dutifully complied, pulling and stretching to work the bands on her exercise equipment. But instead of being rewarded with pain relief, she found that her wrists would dislocate. She questioned whether that reaction was normal.

“I assumed it was kind of weird,” Nicole recalls. “But I thought that maybe I was just flexible.”

By her sophomore year in high school, she was fitted for a back brace to treat her scoliosis. Hot baths provided a brief respite from the pain. But just getting out of the tub caused her hips to “sort of fall,” as she describes it. The condition affected her fingers as well, making it hard to turn a doorknob.


“My surgeons have really high hopes for me, and I’m young. I think I’ll be successful, and I’ll get a new lease on life.” — Nicole Rickert


Pain of another kind also plagued Nicole — her disappointment in not being able to fit in at school.

“High school kids can be mean,” she says. “They didn’t understand. I hurt all the time and didn’t want to go out and do things.”

Still, Nicole excelled in academics, earning top grades and doing well in high school. Yet she almost missed her graduation because she was hospitalized. Although she was discharged in time, she still faced the issue of “trying to walk across the stage,” she says. But with full resolve, she made that milestone walk and, she proudly announces, she did so in her “favorite high heels.”

Nicole then headed to college in Alabama to fulfill her dream of entering a pre-med program and then qualifying for medical school. But that dream was placed on hold when the painful symptoms returned. Nicole had to withdraw for the semester.

Hunting for answers

So began Nicole and her family’s determined search for a diagnosis — one that acknowledged her scoliosis, but then went beyond that to reveal the root cause of her other symptoms. In addition to back pain, Nicole experienced heart issues, where her heart rate would accelerate abnormally. She especially questioned why the curve in her back wouldn’t straighten out even though she wore her brace 23 hours a day.

A local search in Dallas was disappointing. Nicole was told by one health care provider, “You’ve stopped growing. Your scoliosis isn’t getting worse, so go have a great life.” Another told her that she was so flexible, “she could be in the circus.”

Nicole’s mom, Phyllis, however, was with her all the way. “I’d get on the phone and call all these orthopedic places,” she says. “I’d explain all her symptoms, and they would have no idea what I was talking about.”


“I was like, ‘So I’m not crazy!’ Now I know it’s real. Now I have my answer.” — Nicole Rickert


But Phyllis knew her daughter and understood that she was too curious, too smart and too determined to not figure it out. And that’s exactly what Nicole did. She refused to give up, continuing to research her symptoms in hopes that something would reveal the answer.

“I stayed up all night, reading research articles,” Nicole says. “And I ran across Ehlers-Danlos syndrome, a connective tissue disorder.” She immediately announced to her family that she had nailed it. She was convinced it was Ehlers-Danlos that caused her the pain and anguish all those years.

Because Phyllis had arranged an appointment for Nicole with a new orthopedic specialist in Texas, Nicole quickly showed the physician the article that she felt confirmed her own diagnosis. To her relief, he told her she was right. It was Ehlers-Danlos syndrome.

It was an emotional day for Nicole. “I was like, ‘So I’m not crazy!'” she says. “Now I know it’s real. Now I have my answer.”

Taking comfort in compassionate care

As comforting as it was to finally have a diagnosis, Nicole was still sad for what she had lost due to her condition over the years.

“I kind of mourn that person I used to be, where I could go out for hours and shop,” she says. “I turned into the person who had to sit on the shelves at a store, because I would be too tired to stand up.”

Despite that, Nicole was prepared to move forward and ready for the next chapter. Ehlers-Danlos is an inherited disorder, so Nicole was interested in learning more about her genetic makeup. When Nicole heard about physician Radhika Dhamija, M.B.B.S., at the Mayo Clinic’s Arizona campus, she and her family were ready to make the journey.


“We wish we would have come here sooner. We were treated like royalty, and we can only go up from here.” — Phyllis Rickert


Dr. Dhamija, who heads the Clinical Genomics Clinic that opened in January 2017, says Ehlers-Danlos syndrome is common in the field of genetics and is seen frequently at the clinic. When Dr. Dhamija saw Nicole, she confirmed the teen was at the “extreme end of the spectrum, having hypermobility,” where joints move beyond the normal range. She also said that Nicole’s severe scoliosis hadn’t been properly addressed, and she referred Nicole for surgery.

“Unfortunately we still don’t know the gene that causes the hypermobility type of Ehlers-Danlos syndrome that Nicole has,” Dr. Dhamija says.

Nicole admits it was scary to leave Dallas and travel all the way to Phoenix, not knowing what to expect. But she takes comfort in the skill and compassion of Dr. Dhamija, and the relationship she has formed with her genomics nurse coordinator, Mary Madden.

“We wish we would have come here sooner,” Nicole’s mother, Phyllis, says. “We were treated like royalty, and we can only go up from here.”


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