Carol Mannell remembers her younger sister, Kathy VanHulle, as a woman who loved meeting new people and having fun. Carol recalls how, despite being in the midst of receiving care for a serious illness when she was at Mayo Clinic, Kathy would take time to strike up conversations with people sitting next to her in waiting rooms. She would ask them to write messages in a journal she carried with her. Kathy and Carol would sing together in her hospital room.
Kathy even convinced members of her care team at Mayo Clinic to get up and dance.
âWe had a lot of fun. Everywhere Kathy went at Mayo, weâd talk, laugh and get people to do the happy dance with her,â Carol says. âShe had a big personality.â
George Hoggard knows a thing or two about the importance of a rapid response. A former firefighter, the 78-year-old Titusville, Florida, resident spent the better part of his 42-year career teaching astronauts at the Kennedy Space Center how to escape to safety in the event of an emergency on the launch pad. He also was a member of the rescue team that would respond if something went wrong with a space shuttle mission.
So when his right eye suddenly began looking left while watching TV on a Sunday evening in April 2016, George knew something was amiss. When he began feeling nauseated, he told his wife, Rita, he needed to get to the hospital.Â [...]
When Randy Marlow checked into Mayo Clinic Hospital's Saint Marys Campus, he knew his hospital stay would be lengthy. He just wasnât expecting it to last one year, seven months and 21 days.
As someone who needed dual heart and liver transplants, Randy knew the probability of two suitable donor organs becoming available at the same time was small. Moreover, his rare blood type, coupled with a buildup of antibodies from multiple blood transfusions related to prior heart surgeries, meant he would be incompatible with all but 10 to 20 percent of organ donors, according to his physicians.
So Randy, an avid outdoorsman who enjoyed snowmobiling back home in the Colorado Rockies, riding his ATV, and camping, shifted his perspective from action to endurance.
Patience became the operative word. "You have to take it day by day and wait for that right day, for the miracle," Randy says.Â [...]
Mayo Clinic's teen patient education print materials have a new look. The goal of this new design is to help teens engage and take responsibility for their health care and lifestyle choices.
The new design includes:
- Colorful pages
- Age-specific photos and other visuals
- Peer quotes
- Key health messages
- Short chunks of education content
Patient education specialists, designers and health care providers conducted research and used teen feedback to create the new look and tone.
To learn more about the Barbara Woodward Lips Patient Education Center click here
This post was submitted by Amy J. Hahn Sattler from the Section of Patient Education.
When stroke survivor R. Brady Johnson first visited Mayo Clinic nearly nine years ago, his doctors didn't quite know what to make of him. Not only was his stroke, at age 31, unusual, but his post-stroke physicality surprised the team of neurologists he'd come to see.
It had been just over a year since Brady, who lives in Belvedere, Illinois, had a majorÂ stroke during a surgery to mitigate a cerebral hemorrhage. The stroke cost him the sensation in his right side, the ability to speak, to run, and a litany of other abilities. Yet, in the time between the stroke and visiting Mayo, the former senior airman for the U.S. Air Force and marathon runner had managed to coax his body to do things that his rehabilitation team initially said would be impossible.
For two weeks, 14-year-old Jackson Fisher was plagued by headaches, double-vision, nausea and weight loss. His parents, Michelle and Patrick Fisher, werenât sure what was wrong. But when Jackson came home one evening completely exhausted after lacrosse practice, they decided it was time to find out what was going on. The next day, they took Jackson to the emergency room.
What doctors found during that ER visit triggered a series of events the Fishers never could have anticipated and that eventually led the family to Mayo Clinicâs Proton Beam Therapy Program, where Jackson received treatment for a brain tumor.
âEvery single person weâve met at Mayo Clinic has been amazing, and we feel like we were meant to meet them,â says Michelle. âHis doctors told us they were going to fight for Jackson. Theyâve been forthcoming and explained things simply and honestly. I never second guessed his care. Being at Mayo Clinic has been the most positive experience of our lives.â
Turning to the experts
When Jackson first went to the ER in his hometown of Des Moines, Iowa, doctors there ordered a CT scan. The scanÂ revealed a large mass in his brain. Due to the severity of his condition, Jackson was immediately flown via air ambulance to Mayo Clinic in Rochester, Minnesota. The next day he had surgery to relieve pressure in his brain. His care team also ordered a biopsy of the tumor to find out if it was cancer.
âWe told his neurosurgeon, Dr. Daniels [David Daniels, M.D., Ph.D.], and oncologist, Dr. Rao [Amulya Nageswara Rao, M.B.B.S.], âWhatever you need to do, do it,ââ Michelle and Patrick say. âItâs Mayo Clinic. We brought him to the experts to help him.â
"His doctors told us they were going to fight for Jackson. Theyâve been forthcoming and explained things simply and honestly. I never second-guessed his care." - Michelle Fisher
The morning after surgery, Jackson was able to get up and walk. A day after that, he and his family went back home. But his medical odyssey was far from over. Based on the biopsy results, Jackson was diagnosed with a mixed germ cell tumor that had both cancerous and noncancerous cells.
âHis doctors were happy about the diagnosis and told us they have a lot of experience with the tumor type, which responds well to chemotherapy,â says Michelle.
Taking a novel approach
Because not all of the cancer could be removed with surgery, Jackson had 18 weeks of chemotherapy, first at Mayo Clinic and then at his hometown hospital. Although the chemotherapy was effective, Jacksonâs Mayo Clinic doctors wanted to further reduce the tumor size.
Ideally, they would have operated on it, but the tumor location made surgery too risky. So the family met with Nadia Laack, M.D., a radiation oncologist, who recommended proton beam therapy, a highly targeted type of radiation therapy. Jackson completed seven weeks of proton beam therapy of his spine and brain, a treatment that became available at Mayo Clinic'sÂ Rochester campus in June 2015.
âHowâd we get so lucky?â asks Michelle. âProton beam therapy was available at Mayo just in time for my child. Otherwise, weâd have had to relocate across the country, which would have been a huge stress. We were able to drive the three hours home on weekends during his treatment.â
Getting back to life as usual
Jackson, a high school freshman, Skyped with school during his treatment and returned to classes when it was over. Now heâs excited to be back to his normal life, playing lacrosse and basketball, hanging out with friends, and spending time with his brother and his pets.
âJackson has a life-threatening brain tumor, but other than his hair loss, you wouldnât know he has cancer,â says Michelle. âWeâre extremely fortunate that we could go to Mayo Clinic, and we will forever be indebted to his doctors and everyone else who cared for him.â
Even though Jackson has finished his treatment at Mayo Clinic, the Fisher familyâs ties to Mayo Clinic remain strong.
âWeâre really going to miss Randy McKeeman, the child-life specialist, and Nancy Heinzelman, the patient experience coordinator, in the Proton Beam Therapy Program,â says Michelle. âWe instantly bonded with them. Theyâre so genuine and charismatic and truly are exactly where they should be to help children through this process. Weâll go back to visit even when we donât have to because we made fast friends and will miss so many people.â
- Learn more about proton beam therapy.
- Learn more about clinical trials at Mayo Clinic.
- Explore the Mayo Clinic Cancer Center.
- Request an appointment.
Raegan Cury didnât worry at first when she developed a cough in early 2002 that wouldnât go away. She was a healthy young woman, athletic, a former gymnast, and her initial chest X-ray showed what looked like pneumonia.
Even her husband, a pulmonologist, wasn't too worried, until she received a surprising diagnosis. âI never thought it was going to be bronchoalveolar lung cancer,â says her husband, Dave Cury, M.D.
Raegan, who lives in Atlantic Beach, Florida, had surgery to remove the cancer and woke up with just one lung, due to the extent of the disease. The surgery was followed by four rounds of chemotherapy, but in 2003, tests found cancer nodules throughout her remaining lung.Â
That was a dark period for Reagan and her family. She and her husband started their two young children, Chandler and Davis, in grief counseling.Â [...]
When David R. Daugherty, M.D., was growing up in Rochester, he walked to Central Junior High School with his father, Guy Daugherty, M.D., a Mayo Clinic cardiologist.
"Since our school was on dadâs way to the clinic, he made a tradition of walking with each of us kids when we reached junior high age," says Dr. Daugherty, when went on to join Mayo Clinic himself, as a psychiatrist. "We checked our progress by the bells in the Plummer Building. Hearing the chimes helped us get to school on time."
That youthful memory led to an idea: Could the carillon have a set of chimes that are unique to Mayo Clinic?Â [...]
In this entry, Iâll talk about how the disease started and a look into how I was affected. Bear in mind that every case is different and you shouldnât conclude that youâll go through the same things I have. My case, in fact, is more dramatic than most.
I first suspected that something was wrong when I began to lose some of my mental quickness and my physical energy. I also had many other symptoms: bleeding gums, bloodshot eyes, flushed complexion, and abnormally long periods. I saw different specialists for each problem. Then a blood test ordered by my internist revealed very high red, white, and platelet counts. Referred to a hematologist/oncologist in my health plan, I was studied periodically by him but received no treatment. He thought perhaps I had Polycythemia Vera but wasnât sure. [...]
Successfully finishing a medical residency is a significant milestone in any physician's career. But when Natalie Ertz-Archambault, M.D., graduated in June 2016 from the Internal Medicine Residency at Mayo Clinic's Arizona campus, the achievement felt particularly sweet.
"It was an incredible success for me, since I actually started my residency in 2012, completed four months, and then became too ill to work," she says. "At that time, I wasn't sure if I'd ever reach graduation."
Deciding to undergo a surgery to remove your colon is not a decision to be taken lightly, but it was one that Luis Coriano faced earlier this year. And he and his family wanted to make sure they made the right call.
Luis is affected by a rare genetic disorder called familial adenomatous polyposis that causes thousands of polyps to grow in the colon and ultimately leads to cancer. He knew that a prophylactic surgery to remove the diseased organ was the only way to prevent cancer from ravaging his body.
As daunting as the surgery was, however, more worrisome to Luis, was what came after the surgery. Namely, living with a stoma and an ostomy bag.Â [...]
In time, however, the condition began to affect his daily life. Medication didn't seem to help. When Jim sought care at Mayo Clinic in Jacksonville, Florida, his doctor discovered an underlying heart disorder that had gone undiagnosed.
Doctors were able to address his heart problems with a procedure called cardiac catheter ablation.
Today Jim's heart is still in rhythm. The rest of his life picked up the beat. [...]
I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms â seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.
After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital.Â After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response.Â [...]
Thanks for sticking with me! In this entry, Iâll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge â not the professionals whose help I seek.
Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didnât have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted. [...]
"I told my doctor that if he had to cut my spinal cord and put me in a wheelchair to get rid of the pain, that's what I would do," Gary says.
Fortunately, that was not necessary. Instead, Gary found and enrolled in a clinical research trial at Mayo Clinic studying the effectiveness of a new technology to relieve nerve pain such as his. It made a tremendous difference. "I never imagined my legs feeling this good again," he says. "The study was a godsend for me." [...]
When 67-year-old Stefan Gyorkos of St. Augustine, Florida, noticed swelling in his feet several years ago, he didn't think much of it. After all, as chef at a local golf and country club, he is on his feet for hours at a time.
That seemingly innocent ailment, however, would eventually lead to a series of tests and ultimately a diagnosis of a rare disease known as amyloidosis for which he required a bone marrow transplant at Mayo Clinic's Florida campus.
Amyloidosis occurs when a substance called amyloid builds up in the organs. Amyloid is an abnormal protein that is usually produced in the bone marrow and can be deposited in any tissue or organ in the body. Severe amyloidosis can lead to life-threatening organ failure. While there's no cure for the disease, the symptoms often can be managed, reducing the production of amyloid protein.Â [...]
Just six months ago, every step for Amarachi Austin-Okoh was filled with pain. The 11-year-old from Nigeria had enough trouble walking. Things like running, playing tag or playing basketball seemed like a dream. But now they're things she can look forward to, thanks to a life-changing trip to Mayo Clinic.
Amarachi has a condition called Blount's disease. Her mother, Modesther Austin-Okoh, says the family discovered the condition with Amarachi was just two years old.
Todd Milbrandt, M.D., an orthopedic surgeon atÂ Mayo Clinic Children's Center, describes Blount's disease as "a failure of the growth plate to grow on the inside of the knee, specifically, the top part of the tibia." In Amarachi's case, her disease progressed to the point where she had severely bowed legs.
"We wish we could have seen her walk and be like other children," her mother says. "We were always crying for her."Â [...]
People often don't hear the phrase, "You are the most important person in my life today," especially from those other than family. However, Leslie Milde, M.D., has heard it often â from her patients. She is well aware of the significance of her role in the operating room, and the apprehension felt by patients about to undergo surgery.
Now the tables are turned, and as one of the first five patients undergoing proton beam therapy at the newly opened Mayo Clinic Building inÂ Phoenix, Dr. Milde, former chair of Mayo's Department of Anesthesiology in Arizona, is relying on key people in her own life â the team of specialists treating her spinal meningioma, a condition where tumors arise from the membranes that surround the brain and spinal cord. [...]
Sherry, then 39, ran daily. Exercise was important to her. After all, sheâd made it her career. She was a professor of physical therapy at the University of North Florida in Jacksonville and a research collaborator at Mayo Clinic's Florida campus. She spends her days teaching students and patients about the power of exercise and its impact on cardiovascular health.
Climbing out of bed on this morning, though, she recalls feeling âoff.â Although she initially shrugged off that feeling, she would quickly realize this was the first of several signs something more serious was in play.Â [...]
Jim Biles, M.D., understands cancer treatment. A urologist who specializes in cancer surgery, he has spent his career focused on helping people receive the cancer care they need. So at age 72, when Dr. Biles received his own diagnosis of an aggressive type of cancer, he knew how critical it would be to get treatment from someone with experience and expertise.
"When I found out I had a bone tumor, I started hunting around to see who could do the surgery. It turned out that there are very few people in the world I would trust with it," he says. "Not many do it, and even fewer have the experience that Dr. Sim does. He is the kingpin."
Dr. Sim is Franklin Sim, M.D., an orthopedic surgeon at Mayo Clinic's Rochester, Minnesota, campus. After a consultation with Dr. Sim, Jim decided to go through with a complex surgery at Mayo to treat his cancer.
"Being a doctor, I was pretty picky about all the details being well managed," he says. "It was exceptional. I really couldn't have had a better experience."Â [...]