Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Posts (10)

Sep 9, 2010 · Revisiting The Hippy Sisters: A Story of Hope, Healing and Having Fun

The Hippy Sisters held their 5th Annual HipCheck & ChickFest at the end of August, 2010. They all received good news from their beloved Dr. Berry and spent the rest of the time celebrating their friendship and pain-free lives.  They made sure they went out dancing, because now they can!

The Hippy Sisters in front of Rochester Methodist Hospital

The Hippy Sisters in front of Rochester Methodist Hospital, which they affectionately refer to as their second birthplace

Some patient support groups are developed formally, with a mission statement, mailing list, annual goals and hundreds of members. Others develop more organically. Five Mayo patients, who call themselves the Hippy Sisters, started their small support group without even realizing it.

Dr. Daniel Berry with his patients, the Hippy Sisters

Dr. Daniel Berry with his patients, the Hippy Sisters

Kay Anderson, Beth Denton, Barbara Nunke, Rachel Petersen and Cathy Weber met through online chats on the Totally Hip Support Group website.

They were drawn to each other’s posts because they were all quite a bit younger than the average recipient of a hip replacement. They weren’t all Mayo Clinic patients to begin with, but after talking with each other and other patients online and conferring with their own doctors, they all became patients of orthopedic surgeon Daniel J. Berry, M.D., at Mayo Clinic in Rochester.

Dancing on new hips!

Dancing on new hips!

The women have supported each other through surgery and recovery and cheer each other on every day via the Web and e-mail. They also hold an annual reunion by arranging to have their appointments with Dr. Berry at the same time. At their last reunion in November 2008, they went dancing for hours to celebrate their fabulous hips – something they could not have done prior to their surgeries.

Five women from four different states bonded in ways they could never have imagined because of their shared medical issues and because of the care they received at Mayo Clinic. If you would like to connect with the Hippy Sisters to talk about hip replacement, please leave a comment here.  They would be happy to respond.

 

Where do you find support? Send in your comments below to let us know if you have formed a Mayo patient or caregiver support group. Or if you are part of a more formal support network. What has connecting with other patients or caregivers meant to you?

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Aug 6, 2009 · A new way to treat glaucoma

Doctors at Mayo Clinic in Florida and Minnesota are using a new technique to stabilize glaucoma and preserve vision.

Glaucoma is an eye disease that slowly damages the vision. A leading cause of blindness, it occurs when the eye’s natural drainage system fails to work properly. Fluid builds up inside the eye leading to elevated pressure that can permanently damage the optic nerve.

Patients with mild glaucoma usually are treated with eyedrops. For more advanced cases, surgeons can use lasers to enhance the drainage system or construct a new drainage system.

The new procedure, called Trabectome, can be more effective than drops alone but less invasive and safer than standard surgery. The surgeon uses a tiny probe to open the eye’s drainage system through an incision in the cornea.

“It removes a small portion of the eye’s natural drainage system so that it functions better,” says Rajesh Shetty, M.D., Mayo Clinic ophthalmologist.

A routine exam can help identify the early signs of glaucoma. The American Academy of Ophthalmology recommends an eye exam every two years if you’re between the ages of 18 and 60, and every year if you’re older than 60.

Click here to see a video explaining Trabectome.

Catherine Benson is a communications consultant in the Department of Public Affairs, Mayo Clinic in Rochester

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Jul 30, 2009 · Soothing patients with the sound of music

James Jenkins, concert tubist with the Jacksonville Symphony Orchestra

James Jenkins, concert tubist with the Jacksonville Symphony Orchestra

Most would not consider the tuba to be especially calming or gentle. But James Jenkins, a concert tubist with the Jacksonville Symphony Orchestra, proves that not only do people enjoy his music, but patients at Mayo Clinic’s Florida campus actually request it.

As part of its commitment to holistic healing, Mayo Clinic offers patients and the community, art and music entertainment through Humanities in Medicine. The program partners with local entertainers and artists to bring performances to the campus and musicians like Jenkins to the bedsides of hospitalized patients.

Jenkins said he first discovered the therapeutic effects of music when he played at his father’s bedside during the last year of his life. Soon nurses asked him to play for others in the facility. After his father died, Jenkins began working with health-care leaders to tailor a program to the Jacksonville community, and in September 2000, Body & Soul was born.

Body & Soul consists of 200 artists, most of them professional musicians hand-selected by Jenkins. “The musicians make a living through the arts,” Jenkins says, “and they seek ways to give back to the community.”

The program focuses on the therapeutic value of music. “I don’t know how to put into words what you feel,” says Nell Robinson, director of Medical Education and the Humanities in Medicine program at Mayo’s Florida campus. “It is the art of healing. Mayo Clinic understands that there is more to a healing process than medical procedures.”

Jenkins recalls one of the program’s first bedside performances. “I was concerned the violinist was taking too long in one of the rooms,” Jenkins says. “When I went to check on the situation, everyone in the room had tears.” The patient the performance was intended for had been mute for seven years. “He told the musician ‘thank you’ and would not stop chatting!”

Jenkins said he knew – at that moment – that Body & Soul would be valuable. “People have come out of comas after we perform for them,” he says. Indeed, many medical studies over the past decade have documented the therapeutic effects of music and its ability to soothe patients and impact healing.

Mayo Clinic’s Center for Humanities in Medicine integrates the arts, history and ethics in the medical environment at all three Mayo campuses. For a list of upcoming programs, click here.

Catherine Benson is a communications consultant in the Department of Public Affairs, Mayo Clinic in Rochester, Minn.

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Jul 23, 2009 · What you need to know about heart scans

 

Thomas Gerber, M.D., Mayo Clinic Cardiologist

Thomas Gerber, M.D., Mayo Clinic Cardiologist

A CT heart scan produces stunning images of heart arteries and can diagnose serious disease, but it exposes a patient to the radiation equivalent of about 600 chest X-rays. While the risk of developing cancer from the radiation is unknown, it may exist and should make patients who have no symptoms of heart disease think twice before agreeing to such scans.

“If a person has symptoms such as chest pain, the benefit of using these tests to come up with a diagnosis and a treatment plan outweighs the small potential risk,” says Thomas Gerber, M.D., a cardiologist at Mayo Clinic’s Florida campus who was the U.S. lead author of an international study examining radiation doses in cardiac CT scanning. “However, the benefit of performing these scans in patients without symptoms is still unclear, and patients should know that.”

Dr. Gerber also chaired an American Heart Association (AHA) committee that in February recommended judicious use of cardiac CT angiography. The scans should not be used in people who do not have chest pain or other symptoms or who have a low heart disease risk, the AHA committee concluded.

Cardiac CT imaging has become popular in recent years and is sometimes marketed directly to patients. These scans can reveal plaque buildup and blockages that may not show up on other tests. They produce “stunningly beautiful images,” Dr. Gerber says, but “it has not been convincingly proven that detecting plaque at an early stage in patients with no symptoms will allow doctors to make decisions that help their patients live longer.”

Because the use of cardiac CT imaging will continue to grow, it’s important for physicians and patients to understand the potential risks posed by radiation exposure. For perspective, the committee noted, the potential risk of dying from cancer related to radiation from a cardiac CT scan is less than the lifetime risk of drowning or of being hit by a car.

Not all heart scans are the same

“Heart CT scan” is a general term that sometimes describes very different diagnostic imaging studies. One is heart CT angiography, the subject of the recent American Heart Association (AHA) statement. Another is coronary calcium scans, which also produce pictures of heart arteries. But there’s a big distinction between the two. Angiography uses contrast material and a higher radiation dose and detects plaque and blockages in heart arteries. Calcium scans do not involve contrast material, use much lower levels of radiation and detect calcium deposits but not necessarily blockages. This test results in a coronary calcium score.

Knowing the calcium score can help physicians determine a patient’s heart attack risk and plan preventative treatment, says Dr. Gerber.  The benefits of that information should outweigh the very small potential risks. In fact, the AHA has encouraged coronary calcium scanning in patients who have no symptoms but have an intermediate (10 to 20 percent) risk of developing heart disease over 10 years due to age, heredity or lifestyle factors. Heart CT angiography, Dr. Gerber says, should be reserved for patients who not only have risk factors but also have symptoms.

Catherine Benson is a consultant in the Department of Public Affairs, Mayo Clinic in Rochester

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Jul 16, 2009 · Ali is seizure free and still dancing

When Ali Nowotny was just 15, she began to“blank out.” It was summer of 2006, and she was working as a waitress in her hometown of Rapid City, S.D. The episodes occurred about once a month, and left her “spaced out” for several minutes, slurred her speech and gave her headaches.

Ali shrugged them off. But when her boss witnessed an episode, Ali got the encouragement she needed to see a neurologist.

Magnetic resonance imaging (MRI) showed an abnormality on the left side of her brain. Her doctor prescribed medications to control what was diagnosed as a type of epilepsy called partial complex seizures. Medications reduced episodes from 15 to 20 times a day once a month to two to three seizures one day a month.

For two years, Ali took the medication and managed. She continued to participate in St. Thomas More High School cheer and dance teams. But, her studies were suffering.

Ali thought her difficulty at school was due to stress. Her neurologist suggested a second opinion. Ali did the research and opted for Mayo Clinic in Rochester, Minn.

In early July 2008, Ali and her dad, Craig Nowotny, saw pediatric neurologist Elaine Wirrell, M.D., and neurosurgeon Nicholas Wetjen, M.D. Tests identified what looked like a tumor in Ali’s left temporal lobe — the part of the brain connected to memory.

The abnormality showed little growth and appeared benign. But surgeons wouldn’t know for sure until it was removed. The Mayo team suggested the surgery, and soon. Ongoing seizures can impact memory and are unlikely to be controlled with medication.

Ali had another agenda. She wanted to complete the dance and cheer season, including the 2008 Girls Dance and Cheer Competition in November. Her doctors agreed to a delay. And Ali’s school dance team went on to win the Class A Team Dance Championship.

Ali and her dad returned to Mayo in mid-December for surgery.

Dr. Wirrell explained the goal of surgery was to remove the abnormality and stop the seizures without causing additional damage. To do that, another team of Mayo medical specialists worked to determine the surgical approach.

E. Paul Lindell, M.D., a neuroradiologist, and Max Trenerry, Ph.D., a neuropsychologist, and their team would perform the Wada test to locate the dominant language and memory areas in Ali’s brain.

“The doctors were up front with the risks involved,” says Craig. Even with successful surgery, Ali would likely lose some of her ability to retain new memories.

“We came here with the idea to get rid of the seizures permanently,” says Craig. Ali agreed. “If I have to work harder at learning stuff, I’ll work harder,” she says. “Do what you gotta do,” she told her doctors.

Ali spent six hours in the surgical suite on Dec. 19, 2008. By the next afternoon, she was visiting with her brother, Dusty, and other family and friends. Following surgery, doctors discovered the mass they removed contained no tumor cells. Instead, they hoped that removing the abnormal brain tissue would stop Ali’s epileptic seizures.

Just six days after the surgery, Ali and her dad returned to South Dakota to spend Christmas with family. Ali left Mayo saying, “I’m going to take it slow.” But slow isn’t Ali. She was back into dance and cheerleading by the end of February.

“She’s fine, physically, but gets a little overwhelmed at times, when doing a lot of nighttime activity,” says Craig. Since surgery, Ali has not had a seizure. And, her memory hasn’t suffered.

“School is going pretty good,” she says. Tests have been a bit tough, but her test anxiety is abating.

“The best thing about being at Mayo Clinic,” says Ali, “was knowing that everyone there has their own story. You aren’t the only person with issues.”

Ali’s journey may even take her back to Mayo Clinic. She is thinking she might like to work there some day. “Mayo is so different … everyone is there for you, even people you don’t know,” she says.

Editor’s note: Thanks to the Rapid City (S.D.) Journal reporter Lynn Taylor Rick and photographer Kristina Barker. Sharing used information and photos from a series of stories in the newspaper about Ali Nowotny’s journey. Read them at http://www.rapidcityjournal.com/shared-content/story_tools/presentation/?id=78.

Catherine Benson is a consultant in the Department of Public Affairs, Mayo Clinic Rochester.

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Apr 8, 2009 · End-of-life Care at Mayo Clinic: The needs of the patient come first

The following letter was sent to Mayo Clinic leaders by two Mayo employees, Don and Sharon Gabrielson, about the care Don’s mother received from Mayo Clinic during her last days.

Dear Colleagues,

On March 13, 2009 we brought our 81 year old mother, Ruth Gabrielson, to St. Marys Emergency Room. In a few short hours we learned that she had a perforated bowel and bilateral pulmonary embolisms. She was alert and oriented, and capable of making decisions about her care and next steps. Given her age and the high risk of surgery, as well as the diminished quality of life that she would have afterward, she courageously made the decision to decline the surgery and let nature take its course. This meant that within a matter of days, she would die from infection.

She was admitted to Domitilla 6 and from that point on, we focused on the plan for palliative care. Dr. Siddarth Singh was kind and caring, and spent a significant amount of time with all of us discussing options, and being truly transparent about what we could expect. He was a godsend in helping us to begin to formulate a plan knowing that Mom’s primary goal was to be kept comfortable.

The next morning we met the entire team of GI physicians: Drs. Chang, Oxentenko, and Loftus who provided more information in the most compassionate and empathetic manner we have ever witnessed. Mom made the decision to remain in the hospital and receive hospice care on Joseph 3 where she was then transferred later that morning. The hospice room was a blessing, it was decorated beautifully, and had a warm, homelike feel with all the amenities we needed. We were so grateful that mom could spend her final days in such a beautiful environment with plenty of room to accommodate her family.


Every day while she was there, the GI physician team led by Dr. Chang, would come and kneel on the floor by her bedside and ask if there was anything more they could do for her, ask if she was comfortable, etc. They would then turn to us as a family and ask the same. Dr. Chang’s compassion, warmth, and genuine caring was the hallmark of each visit. The nursing staff made sure that a plan for Mom’s care was developed with us for every shift, and provided compassionate care while respecting the individual needs of our family.

Every Mayo employee that we came in contact with during this journey be they the nursing staff, the housekeeping staff, the physicians, or the unit secretaries truly exemplified “the needs of the patient come first”. They were the bright spots in our days, and made us feel like we were their primary focus. Our difficult journey was made easier by the people who cared for and interacted with us.

During this time of economic downturn and the challenges of preparing Mayo for the future we wanted to share this story with you. Our journey is an example of the hallmark of Mayo, and what sets this organization apart from other health care institutions. Please don’t ever loose sight of that! Many other things can, and will, change as we prepare for the Mayo of tomorrow, but if we continue to insure that needs of the patient come first, all of the other metrics will fall into place.

We are both proud to be Mayo employees. Please share this story with others so that they will know that whatever their role at Mayo, the care they provide does not go unnoticed, and does make a difference in the lives of those they serve.

Sincerely,
Don and Sharon Gabrielson

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Apr 2, 2009 · 15-year-old Pianist Touches Hearts and Souls

Catherine Benson is a consultant in Public Affairs at Mayo Clinic.

Alex Walton-Creutz began drawing crowds by playing the piano at Mayo Clinic when he was just eight years old and started coming to the clinic with his mother, Lynnette. Lynnette is a patient at Mayo and comes for treatment at least once a year. When he was eight, Alex was playing Beethoven’s Moonlight Sonata and the Pathetique Sonata. At 15 he’s moved well beyond Beethoven, to playing his own compositions. Alex plays by ear and is always composing.

“Our prayer is that Alex’s music will touch someone’s heart and soul and make their day go a little bit better,” says Lynnette. Judging from the number of people listening to Alex’s music the afternoon when this was filmed, he has already touched many hearts.

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Mar 23, 2009 · "We're calling it 'Planet Mayo,' it's so unlike any other medical institution"

Albert and Mary Errato came to Mayo Clinic in February 2009 when Mary was facing another major operation. After a series of infections and complications, Mary’s foot had been amputated in 2007 at an orthopedic hospital in New York City. She was scheduled for another operation, this time to possibly extend the amputation from mid-calf, below the knee to above the knee, when they decided to come to Mayo Clinic.

According to Al, from the day they arrived, they knew things were different here. “All the doctors talked to each other, and more importantly to the patient!  They worked together to come up with a treatment plan for Mary. We started calling this Planet Mayo, because it feels like we’re on a different planet here.”

In the video below Mary talks about her treatment at Mayo Clinic. For the first time in six years she is off antibiotics, her wound has closed, she is ready to be fitted for a prosthesis – and she was able to keep her knee and lower leg.

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