A trip to Disney World in 2023 was an eye-opener for Katie Crow. It wasn't the rides, parades or immersive activities that caught her attention but that she struggled to have the energy to go to the amusement park every day.

"It wasn't the experience I wanted it to be. That's when I knew I finally needed to do something about my weight," says Katie, an endoscopy nurse with Mayo Clinic Health System in La Crosse, Wisconsin.

That summer, the 36-year-old saw her weight reach 296 pounds. Katie suffered from leg and back pain, had been diagnosed with severe sleep apnea, and her energy was at an all-time low. She also worried about developing diabetes and heart disease, which run in her family. Since 2019, she also had been coping with anxiety and depression.

"The worst part was I couldn't keep up with my kids," says Katie, the mother of three children, now ages 15, 13 and 3. "I was just surviving."

Exploring the options

No stranger to battling her weight, Katie had tried a slew of diets, but none were successful. In the spring of 2023, her primary care provider referred her to the Bariatric Surgery Department at Mayo Clinic Health System in La Crosse. There she learned about her options, which included weight-loss drugs and bariatric surgery.

"I considered the weight-loss drugs, but at the time, some hadn't been approved yet, and given the side effects, they didn't seem like an option for me," says Katie. "But the statistics showing the success of bariatric surgery sounded promising."

Katie hadn't decided on her next steps, and then came the Disney World trip. The trip turned out to be the push she needed to finalize her decision to proceed with surgery, even though she was nervous about the permanent nature of the procedure.

Choosing weight-loss surgery

With the decision made, Katie started her bariatric surgery journey, which included various consultations, a psychological examination and a two-week pre-op diet to prepare her body for the surgery. She also met with Kathriena Greenwell, M.D., who would perform the surgery.

"Dr. Greenwell took the time to answer all my questions and thoroughly explain the risks and benefits," says Katie.

"Katie was an excellent candidate for surgery. Since the surgery, she's been very motivated in her weight-loss goals, dedicated to the weight-management program and is taking her lifestyle changes seriously," says Dr. Greenwell.

In December 2023, Katie underwent surgery. While her body healed, she was on a restricted diet for six weeks.

"I thought I'd never eat real food again," says Katie. "But I'd made the commitment and was determined to make it work."

Making lifestyle changes

When she made her choice, Katie knew that this was a lifelong commitment. She decided to track her experience on social media, posting about the ups and downs of her weight loss and the changes she was making. The most noticeable was the pounds she was shedding. In five months, Katie lost 109 pounds and 84 inches off her body. She'd dropped from size 3X to large.

There were other changes, as well. Dr. Greenwell says Katie's body mass index, or BMI, has decreased from 49.26 to 31, and she no longer is considered morbidly obese. Dr. Greenwell also noted that Katie has stopped experiencing gastric reflux and anticipates that as she loses more weight, she won't require a continuous positive airway pressure, or CPAP, machine to treat her sleep apnea.

"Hopefully, by losing weight now while she's young, it will prevent her from developing the complications of obesity, including diabetes, heart disease and hypertension," says Dr. Greenwell.

Katie also has seen other personal victories beyond the numbers on the scale. Her leg and back pain are gone, she doesn't worry if a chair will hold her when she sits down, and she delights in shopping for clothes wherever she wants. Her anxiety and depression also have subsided.

"I have more energy than before," says Katie. "My goal is to get down to 150 pounds, but based on the way I feel now, I'd be happy staying at this weight. Bariatric surgery is a tool, but you still have to do the work every day. It requires mental toughness and dedication; I didn't realize how challenging it would be mentally."

For those considering weight-loss surgery, Katie advises researching the process and understanding the commitment you'll be making.

"Going in, you know that you're going to be on vitamins and supplements forever, you won't be able to tolerate certain foods, you need to monitor your protein and hydration, and you have to become a regular exerciser," says Katie. "But ultimately, you have to look at the bigger picture.

"I'm no longer just surviving; I'm thriving. I've become the mom I always dreamt of being," she says. "My only regret is that I didn't do this sooner."

This article first published on the Mayo Clinic Health System blog.

The post Thriving, not just surviving, after bariatric surgery appeared first on Mayo Clinic News Network.

In July 2022, Mayo Clinic was one of the first in the nation to open an IBD Pride Clinic. The clinic aims to create an affirming space for LGBTQ+ patients to talk about their specific healthcare concerns.

Watch: IBD Pride Clinic: Belonging while battling bowel disease

Journalists: Broadcast-quality video (2:58) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Twenty-seven-year-old Ani Roy, a patient, Mayo Clinic staff member and transmasculine nonbinary person, says the IBD Pride Clinic is a place of comfort.

Ani doesn't take eating for granted. They were diagnosed with Crohn's disease in 2017 after experiencing painful stomach aches and, at times, being unable to eat.

It was difficult to digest foods

"The only thing that I was really able to eat was chicken strips and raspberry iced tea. For some reason, those were the only things that didn't make me want to vomit," explains Ani.

Inflammatory bowel disease took a toll on Ani's body, causing frequent trips to the toilet with bloody diarrhea and other symptoms.

"It got to the point where I was starting to pass out," they say. "I was shaking and just, like, sweating, feeling very faint and wasn't really able to function as a human being."

After several hospitalizations and failed medications, Ani had their colon and rectum removed, leaving them with an ileostomy. The surgical procedure creates an opening in the stomach to divert stool. Waste is collected in an ostomy bag that's attached to the abdomen," says Ani.

Crohn's disease is mentally and physically challenging

"It is a very big mental adjustment," they say.

With the stigma surrounding the ileostomy and their gender identity and sexual orientation, Ani reached out to the Mayo Clinic IBD Pride Clinic for support.      

"Many LGBTQ+ patients suffer in silence," says Victor Chedid, M.D., director of the Mayo Clinic IBD Pride Clinic. 

"They might be struggling with their identity internally. And add to it the fact that you're struggling with your diagnosis of inflammatory bowel disease, that has a double or additional psychological impact on you," says Dr. Chedid.

"It's so nice to go to a provider that is informed about the LGBTQ+ community so that I don't feel like I have to educate them on that part of me. I can just be that part of me," says Ani.

Healing and Hope

The IBD Pride Clinic is staffed by healthcare professionals who are trained to be sensitive in the care of LGBTQ+ patients.

"This is a safe space for you to talk to us about your inflammatory bowel disease and anything that might be impacting your life," says Dr. Chedid.

Meanwhile, Ani is turning their pain into purpose, sewing ostomy bag covers for themselves and others. Living life one day — and one stitch — at a time.

"Overall, I'm doing pretty well, living life as best as I can," says Ani.

The post IBD Pride Clinic: Belonging while battling bowel disease appeared first on Mayo Clinic News Network.

Tommy John surgery is not just for baseball pitchers. Ask Kylie Donat of Bemidji, Minnesota.

Kylie is an 18-year-old high school swimmer, track and field athlete, and wrestler. She has been wrestling since 2021, the first year that girls' wrestling was a sanctioned high school sport in Minnesota. By 2023, Kylie was favored to win her weight class at the state championship.

Then came the practice that changed everything.

In January 2023, her wrestling partner threw her down on the mat. Kylie tried to catch herself, but her left elbow bent awkwardly, and she heard popping sounds. A week later, she used the Heimlich technique on a teammate who was choking on her food. The maneuver worked, fortunately, but it made Kylie's injury – to her medial ulnar collateral ligament – worse.

"It was a complete rupture, as bad as it could be," says Christopher Camp, M.D., a Mayo Clinic orthopedic surgeon who had a virtual appointment with Kylie in March 2023.

Despite the injury, Kylie was eager to return for her senior season and compete in the state championship. Dr. Camp put Kylie on a standard short course of nonoperative treatment consisting of rest and physical therapy to give the ligament time to heal and stabilize on its own. But it didn't stabilize, so surgery was the next step.

A week later, Dr. Camp performed the ligament reconstruction using the anatomic technique, a new approach he developed at Mayo Clinic. This procedure builds on Tommy John ligament reconstruction surgery, which was first performed on baseball pitcher Tommy John in 1974.

The injury is most common in baseball players, but it can affect athletes in other throwing sports such as softball and javelin. Wrestlers and gymnasts may sustain traumatic versions of the injury.

During surgery, Dr. Camp repaired Kylie's ligament, gave her a new one (taking a tendon from elsewhere in her body to form a new ligament) and added an InternalBrace (2-millimeter-wide suture tape) for stability.

"It's designed to recreate the normal anatomy of the ligament," Dr. Camp says. "It uses newer fixation and anchor devices that are smaller and stronger, and it increases the contact area between the graft and bone to create a larger surface area for healing."

Kylie went home the same day and began to focus on her recovery.

Once Kylie got her splint off and was fitted for a brace, she began her rehab in earnest. She did a lot of stretching so her injured arm could move like the other one. Once she got full movement back, she started building the muscles in her entire body and around the elbow, including the shoulder, bicep, tricep and forearm.

"Knowing that I had lost that opportunity (to compete) due to an injury, I was ready to get back out there," Kylie says. "I knew it would take a lot of work."

Kylie's mother, Sara Donat, says her daughter was determined, but knew she couldn't rush her recovery. Once Kylie was cleared to do pushups and work more of her muscles during physical therapy, she started to have hope. She added swimming to her regimen, which she knew would be good for her elbow and overall athletic shape. In October 2023, she wrestled for the Minnesota Storm in Iowa.

"After that, I was like, 'Wow! I'm really ready to wrestle,'" Kylie says.

Traditionally, the recovery from this type of surgery is a year or longer for a throwing athlete. For a wrestler, recovery is usually nine to 12 months. Kylie got back to wrestling in five months.

"She did a great job on her rehab and physical therapy," Dr. Camp says. "She was extremely motivated and worked hard. We had a very clear goal – wrestling – so she could compete in the state tournament."

In March 2024, Kylie fulfilled her promise to herself by winning her weight class at the state wrestling tournament. Her elbow didn't cause any problems.

"It was the best feeling," she says.

The post New elbow surgery technique developed at Mayo Clinic helps wrestler get back on the mat appeared first on Mayo Clinic News Network.

Rich Bugay had an appointment with the Division of Gastroenterology and Hepatology at Mayo Clinic in Rochester, Minnesota, on a Monday, where he had hoped to get answers and relief for what he thought was refractory acid reflux — until his doctor discovered a heart murmur. The next morning, Rich was told he had congenital heart disease and a severely dilated aorta that could rupture. Just two days later, Rich underwent lifesaving heart surgery. After a whirlwind four days, Rich was on the road to recovery.
___________________________________________________________________________________

Rich Bugay, an HVAC business owner, husband, and father to two children, hadn't been feeling well for over a year. What started out as sinus issues gradually turned into severe acid reflux and exhaustion, making it hard for Rich to get through the workday.

"I wasn't feeling well — I had a lot of acid reflux and stomach discomfort. I had been going to a lot of different doctor visits, like my family practitioner, and I wasn't getting any answers," says Rich. "And so, at some point, I decided I wanted to go to the best place I could go."

Watch: Rich's story

Rich and his wife, Lori, left their house in Escanaba, Michigan, and drove more than six hours to Mayo Clinic in Rochester for an appointment with Dr. Houssam Halawi, a Mayo Clinic gastroenterologist.

During the appointment, Dr. Halawi listened to Rich's history, concerns and symptoms.

"And what caught my attention was, he had a lot of different symptoms that didn't really belong in the GI (gastrointestinal) world," says Dr. Halawi. "And at that point, in my mind, I was thinking this is not an acid reflux problem."

When Dr. Halawi listened to Rich's heart, he heard a suspicious murmur. He knew something — potentially big — was going on, and he recommended that Rich receive an urgent echocardiogram. An echocardiogram is a common test that uses sound waves to create pictures of the heart to find heart disease and other heart conditions.  

Rich was hesitant to have the echocardiogram since he just wanted some relief from his presumed acid reflux and didn't think he had a life-threatening issue.

Knowing that Rich would most likely go home if the echocardiogram couldn't be scheduled quickly, Dr. Halawi asked the scheduling team if there was any way they could arrange the echocardiogram for the next day. When the scheduler asked, "Would tomorrow morning work for you?" Dr. Halawi didn't expect it to be that quick.

Rich and Lori decided to stay at Mayo Clinic for the echocardiogram the next morning.

Confirming suspicions

Kylie Marvin, the sonographer who performed the echocardiogram, immediately noticed something was seriously wrong. She walked out into the hallway and informed Dr. Charles Jain, a Mayo Clinic cardiologist, about her findings.

"His aorta was severely dilated, well over what we would traditionally consider as the surgical cutoff for elective intervention," says Dr. Jain.

A severely enlarged aorta — the pipe that delivers blood out of the heart — could have acute complications, such as a rupture, which can be life-threatening.

The echocardiogram also showed that Rich had a bicuspid aortic valve.

The aortic valve usually has three cusps. A bicuspid valve has only two cusps. Rich's bicuspid valve wasn't closing tightly, which was causing blood to flow backward.

Dr. Jain called a radiologist and arranged an urgent CT scan for Rich that same day. The results of the CT scan confirmed the findings, and Dr. Jain called Dr. Gabor Bagameri, a Mayo Clinic cardiovascular surgeon, who was willing to make room in his schedule to quickly see Rich and arrange for surgery.

"At Mayo Clinic, the needs of the patient always come first, and even in the middle of the night, 24/7, you can always reach for help," says Dr. Bagameri.

He encouraged Rich that his heart problems were fixable and advised him not to wait to undergo surgery.

"He let me think about it and came back into the room about five minutes later and he says, 'OK, so we're going to do this Thursday, right?' I say, 'You know it.' And he says, 'I knew you were going to say that!' So, we were ready," says Rich.

"Like a well-oiled machine"

On the day of the surgery, Rich said everything was very structured and organized. The surgery itself was a success, as was his hospital stay.

"Like a well-oiled machine, everything just went so well, so smoothly," says Lori. "I've never experienced anything like that before, and that's how healthcare should be everywhere. Everyone deserves to be treated like they do here."

Now, nearly six months after his procedure, Rich feels almost 100% better.

"They saved my life," says Rich. "I'm a completely different person — I feel like a million bucks. I can do what I want to do, and my energy levels are much better."

Looking back on the experience, Dr. Halawi recognizes that Rich wouldn't have had such a positive outcome without every single person involved at Mayo Clinic. Dr. Jain echoes that sentiment, "When there are patients who are having a significant abnormality, particularly with urgency, such as Rich's, everything is already set up for teamwork to be natural, and fortunately, this makes it all relatively seamless."

Reflecting on his healthcare journey, Rich says that you need to advocate for yourself.

"If you haven’t been feeling right for a long time and feel like you're not getting answers, come to Mayo Clinic because they'll get to the bottom of it," says Rich.

The post ‘I’m so happy we’re here:’ An unexpected diagnosis saves Rich Bugay’s life appeared first on Mayo Clinic News Network.

Watch: Lymphedema: A lesser-known breast cancer side effect with lifelong impacts

Journalists: Broadcast-quality video (2:39) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I thought once I rang that bell, it was over. But it wasn't over," says Sonya.

A few months after completing targeted radiation treatment for breast cancer, Sonya noticed swelling in her lower arm.

"I wasn't sure what it was. And they told me, 'Hey, you need to come into the emergency room. It might be an infection.' And (I) went to the emergency room, and they're like, 'No, it's lymphedema,'" says Sonya.

Lymphedema is a chronic and debilitating disease in which tissue swelling is caused by an accumulation of fluid that's usually drained through the lymphatic system.

About 40% of people who undergo breast cancer surgery where their lymph nodes are removed will develop lymphedema.

"It was painful. It was hard to sleep because it just felt like my arm was thumping all the time. I noticed, particularly at the end of the day, like, I typed a lot for my job. And I noticed my arm at the end of the day would swell up," says Sonya.

"To be honest with you, it was a little disheartening because I thought, 'Hey, this is over because, you know, you got the cancer. The cancer is gone, but now you have to live with the aftereffects.'"

But she didn't have to live with it. Sonya did some research and reached out to her Mayo Clinic care team. She found out about a surgery to help patients with lymphedema.

"When I met Sonya, she already had stage 2 disease," says Dr. Vahe Fahradyan, a Mayo Clinic plastic surgeon who specializes in breast reconstruction and lymphatic reconstruction. "In her particular case, because she had some remaining functional lymphatic vessels, we decided that we're going be able to do lymphovenous bypass surgery." 

Using special dye to identify the lymphatic pathways, surgeons use small incisions to reroute the lymphatic system by connecting tiny lymphatic vessels to tiny veins, creating a detour around the damaged part of the lymphatic system. This new connection restores the body's ability to drain lymphatic fluids.

While lymphedema is considered an incurable disease, getting outcomes like Sonya's, where patients can easily manage the symptoms and improve their quality of life, is the ultimate goal.

"My symptoms are so minimal, says Sonya. "I've gotten back to working out, and I'm able to swing kettlebells, which I couldn't do before. And my arm does not swell up at the end of the day. So that's amazing to be able to sleep and sleep better, and there's no more pain."

Dr. Fahradyan says one major key to achieving that is early diagnosis.

"The message is that if you notice that you have arm swelling or breast swelling or the lower extremities, it is not normal. You don't have to live like this," he says.

The post Lymphedema: A lesser-known breast cancer treatment side effect with lifelong impacts appeared first on Mayo Clinic News Network.

What started as a persistent headache for Spencer Lodin soon devolved into slowed speech, seizures, and hallucinations, symptoms which stumped ER doctors into thinking he had meningitis or was suffering from psychosis. Finally, specialized testing at Mayo Clinic identified Spencer's condition as GFAP-IgG associated autoimmune encephalitis, which allowed for targeted treatment and a full recovery.  

It was April 2020, the COVID-19 pandemic in full swing, when Spencer Lodin, 37, a mail carrier from the Twin Cities, experienced a persistent headache, which soon devolved into numbness on his left side, slowed speech, seizures, and hallucinations. After a series of ER visits and subsequent hospitalizations, Spencer's doctors began to suspect encephalitis — inflammation of the brain for which there can be various causes. Specialized testing at Mayo Clinic revealed he had GFAP-IgG associated autoimmune encephalitis. Once this rarer antibody was identified, Spencer could begin more targeted treatment, and the long road to healing.

When Spencer first complained about his headache to his primary care physician, the doctor told him to switch from ibuprofen to Tylenol. It didn't help. Then he started losing sensation on one side of his body.

"My brother-in-law, a doctor, was concerned I wasn't getting better and suggested I go to the ER," says Spencer, who is the youngest of five. "I went to the ER at the University of Minnesota Health Center. They gave me a CAT scan that came back with nothing abnormal. So, they discharged me and said I was fine."                                  

But Spencer wasn't fine. Two days later he was back in the ER. The numbness on his left side had gotten worse, and his headache was still raging. An MRI found inflammation in his brain. Spencer then underwent a spinal tap. His initial diagnosis was meningitis, and he was checked into the hospital. "They put a PICC line in me and then released me after three days with a schedule of drugs," Spencer recalls. "My sister said that when I got home that day, my speech had really slowed down and I wasn't sounding like myself."

Spencer's initial misdiagnosis of meningitis isn't uncommon, according to Andrew McKeon, M.B., B.Ch., M.D., a neurologist and director of the Neuroimmunology Laboratory at Mayo Clinic. "Once the inflammation gets into the brain you can get signs of conditions like viral or bacterial meningitis, because the initial presentation is not very specific," says Dr. McKeon, who treated Spencer once he came to Mayo.  

Walking in circles

A couple of days later, Spencer was at home on a Friday night hanging out with a friend when, at one point, his friend noticed him walking around in circles. "And they were like, 'Are you OK?'" Spencer says. "I apparently told them I was trying to walk off the pain of the headache." An ambulance was called, and Spencer was taken back to the ER. But he ended up at a psychiatric hospital. He was examined more for psychosis rather than for his other symptoms.

"WHEN SPENCER WAS SEEN IN THAT STATE OF MENTAL AGITATION, ONE MIGHT THINK OF AN EARLY PSYCHOSIS," DR. MCKEON SAYS. "BUT WHEN YOU ADD THE HEADACHE, AND NUMBNESS DOWN ONE SIDE, AND SLOWED SPEECH, IT BEGINS TO INDICATE ENCEPHALITIS."

Spencer was discharged that same night. He tried to call for a ride but was too disoriented to complete a simple phone call. He somehow made it home, barefoot, after an hour's walk. Spencer continues, "When I woke up in the morning the left side of my body had gone numb again," he says. "So, I went downstairs to the person who lives below me and asked them to call an ambulance. The ambulance brought me to the hospital. And that is the last thing I remember for a month."

After a host of additional tests, doctors at the University of Minnesota suspected Spencer had encephalitis. But they needed to confirm the particular antibody causing the inflammation of his brain. A sample of Spencer's cerebral spinal fluid was sent to Mayo Clinic Laboratories for testing. The results would take two weeks because such testing is extensive.

"OUR APPROACH IS, IF THE PATIENT HAS ENCEPHALITIS, WE SHOULD INCLUDE IN OUR TEST EVALUATION EVERY ANTIBODY THAT'S PERTINENT TO THAT DISEASE STATE," DR. MCKEON SAYS. "THE GFAP ANTIBODY WAS DISCOVERED AT MAYO, AND AS SOON AS WE VALIDATED IT CLINICALLY, WE INCLUDED IT IN OUR EVALUATION FOR AUTOIMMUNE ENCEPHALITIS. AND THAT'S WHAT CAME BACK AS POSITIVE IN SPENCER'S CASE."

Mayo Clinic is the only hospital in the country that offers testing for GFAP-IgG. Shannon Hinson, Ph.D., principal developer in Mayo's Neuroimmunology Laboratory, developed and validated the test.

"GFAP-IgG was first identified by its unique staining pattern of mouse brain tissue," Dr. Hinson says. "Once we realized it was a unique staining pattern, and a group of patients all had similar clinical symptoms, we worked on discovering what the pattern was. After we identified it as GFAP, we developed a test for it." The test takes time because, as Dr. Hinson adds, "It's homegrown within the lab, meaning we don't buy the test. We grow the cells and plate the cells here." There are different types of encephalitis, which can be caused by a viral infection, an insect bite, or an autoimmune reaction as in Spencer's case.

"THAT'S WHY THIS TEST IS SO VALUABLE, BECAUSE IT HELPS NARROW DOWN THE TYPE OF ENCEPHALITIS," DR. HINSON SAYS. "AND IT HELPS GUIDE THE DOCTORS ON HOW TO TREAT THE PATIENT. PLUS IT GIVES THE PATIENT AN ANSWER. IT PROVIDES COMFORT TO THE PATIENT TO KNOW, ‘THIS IS WHAT I HAVE.'"

Losing hold of reality

While waiting for his test results in the hospital, Spencer's condition deteriorated into an agitated, incoherent state. "I think what was happening is that my brain wasn't able to see reality, and I was having visions in my head. I was physically reacting to what was happening inside my head," he says.

Spencer had to be strapped to his bed, and decisions about his care were left to his oldest sister, Kari. His doctors by now strongly suspected autoimmune encephalitis and discussed a treatment option called plasma exchange. This would mean putting an IV line into Spencer's jugular vein. "Plasma exchange is typically done to remove autoantibodies," Dr. Hinson says. "It's an immune treatment, in which they take out the immunoglobulin and then put your plasma back in again."

But doctors worried that, even though strapped down, Spencer might still find a way to rip the IV from his jugular, which could kill him. So they held off and instead gave him calming meds. Days later, when Spencer's test came back positive for GFAP-IgG, he was calm enough to begin the plasma exchange.

"IT WAS A 10-DAY TREATMENT — FIVE TREATMENTS EVERY OTHER DAY," SPENCER SAYS. "I'D SAY AFTER THE SECOND TREATMENT IS WHEN THE LIGHTS CAME BACK ON. I WAS BECOMING MORE MYSELF AGAIN AND WAS ABLE TO HAVE COMPLETE CONVERSATIONS."

Spencer spent six weeks in the hospital and lost 30 pounds. Before being released, he needed a few weeks of rehab. The encephalitis left him in a similar state as a stroke victim. He had to learn how to use his left side again, how to walk normally, tie his shoes, and zip up a sweater. Once he was discharged and back home, Mayo Clinic took over his aftercare.

"The University of Minnesota recommended I take steroids for a while, orally," Spencer says. "But Dr. McKeon wanted to change that up. To really nip the encephalitis in the bud, he thought it'd be better if I did steroids intravenously, once a week for a month. He ordered an MRI and a spinal tap to check on the inflammation. He wanted to do some EEGs to check on how my seizures were doing. I'd say by this point, I really wasn't having any seizures. So he was just doing a lot of testing right off the bat."

Dr. McKeon adds: "The initial care is pretty intense, but then it doesn't require a huge amount of follow-up — once every six months."

Spencer did have one slight relapse, which manifested as another persistent headache in January of 2022 and sent him back to an ER in the Twin Cities. An MRI detected inflammation in his brain again, so Spencer was admitted to the hospital. But this time, because his records indicated his positivity for GFAP-IgG, he was put on steroids right away, which nixed further complications. He was released after a few days. "When I was able to talk to Dr. McKeon about it, that's when he put me on a longer treatment plan, an IV dose of steroids then oral steroids, which I tapered off of, and he has me on an immunosuppressant," Spencer says.

Spencer's immunosuppressant is currently mycophenolate. "We have to be careful about figuring out a maintenance steroid plan and gradually de-escalating the dose over time," Dr. McKeon says. "Timing for treatment is important, and with a maintenance treatment, people should generally do well."

Today, Spencer has made a complete recovery and is back on his mail route. Being unable to work for a few months was not fun for him. "Driving is one of my favorite things to do," he says. "I just really take pride in it, and I love being behind the wheel. So I was very anxious to get back in the car. Once I got the clear to do that, and after not being able to do much, I was ready to get back into full-time work and be like myself again."

This article first appeared on the Mayo Clinic Laboratories blog.

The post Comprehensive testing leads to targeted treatment for rare autoimmune encephalitis antibody appeared first on Mayo Clinic News Network.

Broadcaster Leslye Gale experienced gradual voice loss but was determined to tough it out on the air. Finally, in February 2024, her vocal folds had grown so weak that she had no voice at all.

Given that her job as an announcer for a radio station in Orlando keeps her on air for five hours each morning, this setback was more than a minor inconvenience — it also had the potential to affect her career.

Her condition worsened to the point that she saw local doctors in Central Florida. While her symptoms were quickly confirmed, she was unable to obtain a diagnosis.

That changed when Leslye came into contact with Dr. Amy Rutt, an ear, nose and throat (ENT) doctor at Mayo Clinic in Florida who specializes in voice disorders.

"One of my listeners heard about what was going on with me, and called the station and urged me to see Dr. Rutt," she says.

The ENT team was able to get Leslye in for an appointment in just a few days. During her first visit, they identified that she had right vocal fold paralysis. At the time, she was just as stressed about her health as she was about the work she was missing.

"I had lost endorsements due to my inability to produce voiceovers," Leslye says. "This condition was affecting both my personal life and my professional life."

Getting answers

Dr. Rutt and Stacey Menton, speech pathologist, explained Leslye's condition to her in a way she could understand. They also presented her with options.

"Our goal is to help each individual get through their vocal recovery as seamlessly as possible while minimizing the emotional and financial impact on their life,” says Dr. Rutt, noting that even a mild voice disorder can cause big challenges to those who use their voices professionally — such as singers, voice actors, professors and radio hosts.

Following a quick procedure at Mayo Clinic, Leslye was able to get rehabilitative support, including telehealth appointments to conduct speech therapy video visits with Menton.

"We wanted Leslye to have the comfort of being in her own home — or even in her radio studio — and have the ability to sit and conduct face-to-face, personalized therapy," Menton says. "It has been a great approach so that she can have the benefits of in-person care while also experiencing the convenience of video visits when it makes sense."

Before long, Leslye's voice diction, strength and tone were the same as before she experienced vocal fold paralysis.

After recovering her voice, the first thing she did was tell her husband that she loved him. "The Mayo Clinic ENT team absolutely changed the game for me and got my quality of life back," Leslye says, noting a recent trip she and her husband made to see country music star Chris Stapleton perform. "Now I’m back, and I’m able to sing along."

The post Professional broadcaster gets her voice back appeared first on Mayo Clinic News Network.

Normally, hearing about a senior with hip problems would not be very surprising. But the senior you're about to meet is a senior in high school. Thanks to Mayo Clinic, this young woman has a bright future that's all teed up.

There's nothing like the sound of a solidly struck drive. Growing up in a golf family, it's a sound that Maddy Trapnell has heard a lot of. But it was a different sound that she says had her worried about her golfing future. "It would clunk, like, over and over again."

That "clunking," as she puts it, was coming from Maddy's hip. Like golf, hip problems run in her family. Maddy says her symptoms started when she was 14. Then, in the fall of 2022, her junior year of high school, she says her symptoms got worse. "My coaches started taking me out of tournaments because, like, I refused to stop. But they took me out because it's like, 'You're in pain. You need to stop.'"

Watch Golfer's future back on course following hip surgery

Journalists: Broadcast-quality video (2:29) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

After seeing a few local doctors, Maddy came to Mayo Clinic, where she met with orthopedic surgeon, Dr. Emmanouil Grigoriou. "So Maddy's case is unique because she had pathology both inside her hip joint, as well as outside the hip joint around the hip with how her bones were formed."

Understandably, Maddy says she was worried about her future. "Like, I was just worried, like, what's my senior year going to look like? Like, am I going to be able to play? Is this pain ever going to go away?"

Dr. Grigoriou explains why was able to get back on the course so quickly. "We're able to do both procedures in the same setting, which is very, very important for the patients and allows them to return back to what they love, faster. We're able to do both the hip arthroscopy and the periacetabular osteotomy; the same setting on the same day with a single anesthesia event, a single recovery, a single rehabilitation — one and done."

Less than six months after surgery and just weeks before her senior season was due to start, Maddy was cleared to start playing again. Maddy says it took a little while to get back into the swing of things. "I started being very consistent again and started having fun again. And yeah, I was excited. It was great."

And a senior season that was once in jeopardy, ended with a top-10 finish at the state tournament. Recently, Maddy was back at Mayo to have three screws, the last reminder of her surgery, removed.

While uncertain about her competitive golfing future, Maddy says she has her eye on college and something else that runs in the family. "What’s next is I'm planning to attend the University of North Dakota for mechanical and aerospace engineering. I love airplanes. I love flying. I love looking at them. I think they're fascinating. And so, I just want to do something that I know I'm going to enjoy and I'm passionate about."

Just like her golf game.

The post Golfer’s future back on course following hip surgery appeared first on Mayo Clinic News Network.

In 2020, just as COVID-19 was breaking throughout the world, 60-year-old Gerald (Gerry) Polcari had a sudden gallstone attack that blocked his biliary system. In addition to experiencing extreme pain, Gerry's kidney and liver began to fail. He went into septic shock and eventually necrotizing pancreatitis. Gerry had previously enjoyed a healthy life with no symptoms or warning signs that anything was wrong. After four months in a Boston-area hospital without family being able to visit due to COVID-19 restrictions, his doctors were unable to determine why he was not recovering. However, they were able to determine he had suffered irreparable damage to the biliary system of his liver. He would eventually be diagnosed with a rare condition called secondary sclerosing cholangitis, which results from a loss of oxygen to the liver.

Gerry would learn that the only treatment for his condition would be a liver transplant. "I was, of course, incredulous when they told me that the only treatment was a liver transplant," says Gerry. "How could this have happened to me? I was living my best life — both personally and professionally. I had signed up as an organ donor when I originally got my license at age 16, but never in a thousand years expected to have to be on the receiving end of an organ transplant."

Gerry was listed for a transplant in Boston in September 2020, and he remained critically ill because his liver could not clear toxins. He was hospitalized every six to eight weeks throughout 2020 and 2021 with recurring sepsis, frequently undergoing endoscopic retrograde cholangiopancreatography procedures (ERCP) to clear out his biliary system.

"I was on a first-name basis with many of the doctors and technicians in the ERCP process," he says. "Due to my extended hospitalization, I had lost over 50 pounds and eventually was on a feeding tube for nearly one year. Needless to say, it was not an experience I would wish on anyone."

As a result of the recurring sepsis and biliary issues, Gerry became increasingly antibiotic-resistant from repeated treatment for sepsis, and in June of 2021, his medical team in Boston was concerned that they were running out of antibiotics to treat him. They feared he could die from an infection. The doctors recommended that he and his family consider being evaluated at other transplant centers where the average Model for End-Stage Liver Disease (MELD) score at transplant was lower than it was in New England, thereby improving his odds for a lifesaving liver transplant. His infectious diseases physician in Boston highly recommended he transfer to Mayo Clinic in Florida to be evaluated and seek another opinion.

Gerry and his family arrived in Florida for an evaluation in July of 2021. "My wife had to push me through the airport in a wheelchair — that’s how weak I was," he recalls. "I was very much afraid that I would never physically recover and would be an invalid for the remainder of my life. But arriving here and looking around, we were immediately struck by the natural beauty of northern Florida. After a few weeks, I started to notice that my health improved marginally because I was able to be more physically active — walking on the beach primarily."

Mayo Clinic accepted Gerry into the transplant program in August 2021. That was when he and his wife decided to relocate to Florida so that he could continue to be active outdoors, especially in contrast to the cold winters up north. He waited about seven months for the final call that resulted in his liver transplant in February 2022.

"During my nearly two years of serious illness, I received seven calls for possible transplant," says Gerry. "It was an emotional process to have our hopes dashed six times. But the seventh call was the charm, and I am forever grateful for my donor's and their family's decision to donate their loved one's organs."

Today, Gerry says he is "doing amazingly well, better than ever anticipated."

"I had experienced such a catastrophic illness that damaged everything in my body that I feared I would remain incapacitated for the remainder of my life," he says. "I am happy to report that my new liver is working well, and over the past two years, I have gradually recovered my physical health."

In addition to his transplant, Gerry credits the care he received at Mayo Clinic and its atmosphere with saving his life. "I have such respect for the Mayo philosophy — of healing the whole person," he says. "The artwork, gardens and occasional piano music are so peaceful. The facilities are state-of-the-art, and I always had the sense that all the staff — from the cleaning people to the transplant surgeons — always had my best interests at heart. The care of my Mayo doctors and nurses was exemplary, and the utmost attention was given to my incredibly complicated case."

It was not just the hospital staff that had an impact on Gerry and his recovery. He also gained a sense of community and purpose from fellow liver transplant patients before and after his transplant.

"I was immediately connected to a liver transplant support group that continues to be a source of purpose for me," says Gerry. "I met others who were thriving after their transplants, which inspired me during some dark days. As we joke amongst ourselves, we are all members of a club we never asked to join. I continue to be involved and pay it forward by helping people new to the group and in that same frightening and lonely place."

Following his transplant, Gerry vowed to give back to Mayo Clinic through volunteer work. Before returning to full-time work, he volunteered on the transplant floor as a nurse aide, restocking supplies and cleaning nursing stations, among other tasks. Through his volunteering, he was able to reconnect with some of the people who took care of him. "That was incredibly heartening to be able to thank them in person for all they did for me," says Gerry. He also volunteers with LifeQuest Organ Recovery Services doing tabling events and speaking at various programs about his transplant experience.

"Our goal is to try to get people to sign up as organ donors as there is such a shortage nationally of healthy organs and over 100,000 people just like me — incredibly sick, with no treatment options other than an organ transplant," says Gerry. "Additionally, I have remained involved in the Second Chance Support Group, offering my perspective to pretransplant patients, and offering to meet them in person if they are local so they can see with their own eyes that it's possible to regain good health and an amazing quality of life. I never actually believed that would ever be possible again for me, but yet, here I am, forever grateful for having my own second chance at life."

This Donate Life Month, Gerry encourages others to consider giving someone a second chance at life by becoming an organ donor. "I would say that it is the last gift you can bestow on the world, a gift that means a second chance to a very sick patient and their family," he says. "Because of my donor, I have lived to not only regain my good health, but to continue on my life's journey. In January, I welcomed my first grandchild into this world — something that I was not sure I would ever live to see. No words can describe how incredibly grateful I am for my donor's final act of generosity."

The post Liver transplant patient becomes volunteer for department that saved his life appeared first on Mayo Clinic News Network.

Each April, the country celebrates Donate Life Month, an observance to raise awareness about the importance of organ donation, celebrating donors' incredible generosity and inspiring others to consider becoming organ donors. It is also a time to celebrate the unique contributions transplant nurses make to the lives of their patients. Inspired by her work and her mother, Stephanie Donelan, a post-liver transplant coordinator at Mayo Clinic in Florida, gave her role as a transplant nurse new meaning by becoming an altruistic living kidney donor.

"I decided to be a living kidney donor because of my exposure to the world of transplant," says Stephanie. "Working with the transplant team, I've had the opportunity to see the need that there is for organ transplants. I know there are plenty of people on the waiting list who don't get an organ. We deal with people who have been really sick, either very acutely or for a really long time, and it's pretty incredible to get to see people with a new lease on life."

In addition to her work and the patients she serves, Stephanie's mother also inspired her decision.

"My mom was diagnosed with early-onset dementia," she shares. "I think, as someone who has had a loved one with a chronic health condition and feeling kind of helpless to do anything, it put me in a position where, when there was an opportunity to make a difference, I felt pretty motivated."

There are nearly 90,000 people on the waiting list for a kidney transplant in the U.S. Unfortunately, the demand for kidneys exceeds the supply. Living donor chains are giving hope to those in need of vital organs.

"A living kidney donor chain is when someone altruistically donates a kidney, meaning donates a kidney with not a specific individual in mind, that can start a chain effect of donors," says Dr. Shennen Mao, a Mayo Clinic transplant surgeon.

"Stephanie's story is an incredibly motivating story," says Dr. Mao. "We have somebody who has really given her career to transplant as a nurse taking care of patients, and then to be motivated to donate a kidney to start a chain and influence the lives of complete strangers going forward — I think her story is just incredible, really practicing what we preach in the transplant community."

Stephanie credits her colleagues and care team, including other transplant nurses, for putting her mind at ease and supporting a quick recovery. "I think because I had so much trust in my care team here I really didn't feel nervous," she says. "I felt very confident in my decision to donate. The level of attention here at Mayo Clinic is really unique."

"I think my mom would be really proud of my kidney donation," says Stephanie. "The values she instilled in me from the time of my childhood is carrying on."

Related resources:

• Mayo Clinic Minute: Reasons to be a living kidney donor
• Mayo Clinic Minute: Expanding the living kidney donor pool to those with Type 2 diabetes
• Mayo Clinic surgeons perform first robotic-assisted kidney transplant in Minnesota

The post Inspired by her mother, career, transplant nurse altruistically becomes organ donor appeared first on Mayo Clinic News Network.