Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

September 11th, 2014 · Leave a Comment

Mayo Clinic Clinical Trial Helps Physician Take On Multiple Myeloma

By Paul Scotti

Dr. Mike Mass undergoes treatment for multiple myeloma at Mayo Clinic in Florida.

When 69-year-old allergist and rheumatologist Mike Mass. M.D., was diagnosed with multiple myeloma in August 2013, he quickly realized that being the patient and trusting the advice of a fellow physician with expertise in a disease outside of his realm of expertise would be a challenge.

“I’ve always advocated open communications with my patients about their treatment options, as it’s important for the physician and patient to be on the same page,” says Dr. Mass. “Although I’m not a cancer expert, I know enough about the disease to ask lots of questions of my own oncologist on the best treatment options available. It was hard balancing the need to express my opinions without impeding my physician’s own expert medical judgment.”

Dr. Mass was in private practice in the Jacksonville, Florida, area for more than 30 years before going part-time and joining an allergy group practice in 2008. That’s where he worked until his diagnosis in 2013, when he finally decided to retire from practicing medicine. He had known he was at a greater risk for contracting multiple myeloma for many years because of a condition called monoclonal gammopathy of undetermined significance , or MGUS, which he was diagnosed with decades ago. MGUS is a condition in which an abnormal protein (M protein) is found in the blood. That increases the risk of developing multiple myeloma at some point in the patient’s life. Dr. Mass had no symptoms but found out several years ago after some blood work that his M protein levels were at the point where he now had “smoldering myeloma,” an early phase of this cancer condition. [...]

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Tags: Dr Asher Chanan-Khan, Mayo Clinic in Florida, multiple myeloma

September 2nd, 2014 · Leave a Comment

A Golden Dream

By Hoyt Finnamore

Dave and Joan Hittner pose with a historic ambulance in the Matthews Grand Lobby of the Mayo Building in Rochester.
After being diagnosed with cancer, Joan Hittner, along with her husband, David, created an organization to raise money to find a cure. Today, David and daughter Christine continue the work.

In 2011, Joan and David Hittner opened a letter from the Mayo Clinic Department of Development. Inside was a request: Would they consider donating $25 to support cancer research?

The Hittners quickly agreed that $25 wasn’t nearly enough.

“After what we’d just been through, that seemed a minuscule amount,” says David. “We started talking about what more we could do.”

The couple, from the Winona, Minnesota, area, had recently returned from Mayo Clinic in Rochester, where Joan had undergone surgery to remove tumors that had encompassed her pancreas and invaded her intestines.

Joan's battle with cancer had started six years earlier. She’d gone to her doctor with what she thought was a gallbladder problem. Instead, Joan found out she had carcinoid cancer, and she was told surgery was her only treatment option. “The cancer was incurable,” says David, and “chemo and radiation wouldn’t work.” [...]

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Tags: cancer, CANCER RESEARCH, Carcinoid Tumor, Development

August 25th, 2014 · Leave a Comment

Physician Experiences the Mayo “Patient Experience” After Double Lung Transplant

By Paul Scotti

Joseph J. Tepas III, M.D., a 68-year-old pediatric surgeon in Jacksonville, Florida, who had idiopathic pulmonary fibrosis and later a lung transplant at Mayo Clinic in Florida.

When a doctor suddenly becomes the patient with a life-threatening illness, Mayo Clinic’s commitment to high-quality medical care that puts the needs of the patient first takes on fresh perspective, especially as it relates to the principle of compassionate care, which is a hallmark of Mayo Clinic.

Such was the case when Joseph J. Tepas III, M.D., a 68-year-old pediatric surgeon in Jacksonville, Florida, learned that the wheezing and shortness of breath he was experiencing turned out to be idiopathic pulmonary fibrosis, a potentially life-threatening disease that occurs from unexplained scarring of the lung tissue.

In addition to doing pediatric surgery, Dr. Tepas is a practicing trauma surgeon and surgical intensivist. He is the medical director of the region’s only pediatric trauma unit, and, as a retired captain in the Navy Reserve, appreciates the critical importance of maintaining a personal commitment to health and fitness. Dr. Tepas had always lived a healthy lifestyle and, other than some occasional allergy symptoms, never had any significant health issues. But lying dormant in his otherwise healthy body was a disease that was quietly scarring and shutting his lungs down.

[...]

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Tags: Katie Caples, Katie Ride for Life, lung transplant, MayoClinicFL, Pulmonary Fibrosis

August 15th, 2014 · 9 Comments

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

By iggeez

Karen Gibson at Mayo Clinic with her husband. I want to share my story to possibly help another person and to hopefully help others who are still facing their own health unknowns.

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 – 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. 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.  [...]

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Tags: lupus, Myasthenia Gravis, Patient Stories

August 14th, 2014 · Leave a Comment

A Kidney Between Friends

By Hoyt Finnamore

Todd Goldrick, transplant patient, stops for a photo with his donor, Marty Yeager. Todd Goldrick was living the dream. Good job. Loving wife. Two young, healthy kids. Weekends spent playing golf, softball, kayaking, hiking, running or just hanging around home with the family. But that changed suddenly in 2010, when he and his wife simply tried to buy some life insurance. He was just 28.

"Mine came back straight out denied," Todd says. "They told me the reasons. There was a whole long list -- high cholesterol, high blood pressure, and a few other things that I don't remember exactly."

Before that day, Todd says he'd been to see his doctor in the Minneapolis–Saint Paul area "maybe every two years," so the policy denial came of left field. In fact, he says it scared him into doing nothing about it, at least initially. "I was kind of naïve and a little scared to go back to the doctor," he says. "So I didn't do anything."

Six months later, he got a sinus infection that wouldn't go away, and eventually he went to urgent care, where some flags were raised unrelated to his sinuses. "They took my blood pressure, and it was 200 over 120," he says. "At that point, they told me I needed to go to the ER."  [...]

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Tags: Alport syndrome, kidney disease, kidney transplant, Living Donor Transplant

August 13th, 2014 · Leave a Comment

Leukemia Survivor Volunteers in a Unique Way to Help Fellow Bone Marrow Transplant Recipients

By Paul Scotti

Charlie Willwerth, a 61 year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Fla. is taking the necessary steps to help bring life-saving stems cells to others in need of a bone marrow transplant. Some people who overcome a life-threatening illness feel motivated to give something back to those who helped make their recovery possible. Charlie Willwerth, a 61-year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Florida, is taking steps to help bring life-saving stems cells to others in need of a bone marrow transplant.

Two years out from his bone marrow transplant, and with his leukemia in remission, Charlie recently completed courier training with Be The Match, the world’s largest bone marrow registry, to become a volunteer stem cell courier. His new “job” -- transporting life-saving stem cells from a donor’s location to a matching recipient -- can take him anywhere in the world.

“This is the most direct way I can help others who have helped me get a second chance at life,” says Charlie. “If it wasn’t for my donor, I might not be here today to have the opportunity to help others with needs similar to mine.” [...]

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Tags: Bone Marrow Donor, bone marrow transplant, Dr James Foran, Leukemia, Mayo Clinic in Florida

August 4th, 2014 · 3 Comments

In a moment … a poem, and a vision of hope

By Hoyt Finnamore

Photo of hands playing piano. Sometimes the only way to respond to a thing of beauty is to pour your thoughts out onto the page. And that’s what Mayo Clinic patient Jerry O’Donnell, of Waterloo, Iowa, did after being moved, perhaps even changed, by experiencing the beauty of music in the atrium of the Gonda Building on Mayo’s Rochester campus.

Over the past year, Jerry has been a regular visitor to Mayo Clinic, after being diagnosed with a rare form of abdominal cancer located in the duodenum. It was a difficult diagnosis. “Over a short period of time, the reality of my health became more weight bearing,” he says. “Even while at Mayo, peaceful moments were difficult.”

When something like that happens, he says, your values change and things take on a new significance. Jerry found healing moments while listening to the piano in the atrium in the Gonda Building. “The piano became a refuge,” he says. “Music brought hope and connection. A larger family emerged before me as did a humbler sense of self with more gratitude for just being alive today surrounded by the treasures of my life, my family. Music like ‘It’s A Wonderful World,’ ‘Amazing Grace,’ and even ‘The Wheels on the Bus’ can change us.” [...]

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Tags: cancer, Gonda Building, piano

July 28th, 2014 · 1 Comment

A New Approach to a Difficult Cancer Diagnosis

By Hoyt Finnamore

Tom Peroulas returns to coaching after surgery for a rare cancer.

At age 39, Tom Peroulas was active and fit. Coaching and playing rugby, biking to work in downtown Chicago, and exercising daily kept him in good shape. So when he started noticing pain in his leg, groin and hip, he thought it was probably related to activity. He tried stretching and yoga. He rested it. He worked with a physical therapist. Nothing helped.

After several months of persistent pain, Tom turned to his doctor, who referred him to a specialist in orthopedics. By the time he turned 40, in April 2013, tests revealed the startling reason for his discomfort: an uncommon kind of cancer called chondrosarcoma that begins in the cartilage around bones. The cancer was affecting Tom's hip socket, or acetabulum. But although the source of the pain had become clear, the best way to deal with it had not.

Faced with a wide range of surgical options, Tom dove into researching his choices. After an exhaustive search that had him talking with physicians as far away as Canada and Europe, he decided to go to Mayo Clinic. Using a unique technique for hip reconstruction, the orthopedic surgery Tom had at Mayo allowed him to return to his life with the cancer removed and chances good that he won't need another reconstruction in the future.  [...]

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Tags: cancer, Dr David Lewallen, Dr Franklin Sim, Orthopedic Surgery, Chondrosarcoma

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