Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

August 15th, 2014 · Leave a Comment

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

July 16th, 2014 · Leave a Comment

Air Ambulance Ride Confirms Family’s Gratitude for Mayo Clinic

By Hoyt Finnamore

Brandon and Becky Mauck, with their children. Growing up in South Dakota, Brandon Mauck had heard stories about the famous medical institution surrounded by cornfields in Rochester, Minnesota. Mayo Clinic's reputation inspired him to become part of the Mayo organization, and for the past four years, he has been working in the Department of Nursing at Mayo Clinic in Arizona. What he perhaps wasn't expecting is how strongly his beliefs about the organization would be confirmed through his personal experience and that of his young family.

Recently, Brandon wrote to Mayo Clinic's president and CEO, John Noseworthy, M.D., to recount a personal story that confirmed his pride in Mayo. “I must say that I never imagined that I would be so well cared for by my employer," he writes. "I feel it is vitally important to say ‘thank you’ and make sure you all know how grateful I am.”

It all started in late 2013, at a family gathering in North Dakota in 2013. Brandon had traveled there with his wife, Becky, and two daughters, Annastyn, then 3, and Maci, then 2. Just a few hours after their arrival for the festivities, Becky, who was 29 weeks pregnant, went into premature labor.

“Being in rural North Dakota and three hours away from trusted medical care was quite distressing,” Brandon says. [...]

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Tags: Dr. John Noseworthy, Mayo MedAir, NICU, Nursing, Premature Labor

June 30th, 2014 · 1 Comment

Nicole’s Journey From Nurse to Transplant Patient and Back

By Hoyt Finnamore

Mayo Clinic nurse and transplant patient Nicole Jahns. When Nicole Jahns was just five months old, her parents – and her doctors – knew something was wrong. She wasn't gaining weight like a five-month-old should, and she wasn't, as her doctors put it, "thriving." They soon discovered why. Nicole had cystic fibrosis, an inherited disorder that affects the cells that produce mucus, sweat and digestive juices causing them to become thick and sticky rather than thin and slippery, as they should be. It's a life-threatening condition that can cause severe damage to a person's digestive system and lungs.

Though it's been challenging at times, Nicole has never allowed her condition to stop her from living her life, and she dedicated herself to caring for others as a nurse at Mayo Clinic in Rochester. In late 2012, Nicole’s life was interrupted for six months while she waited for a double lung transplant. That transplant finally came in early May 2013, but getting there wasn't easy.

For starters, in a story in a local newspaper, one of Nicole's pulmonary physicians at Mayo Clinic, Mark Wylam, M.D., said that to simply stay on the transplant list, Nicole couldn't leave the hospital during her six-month wait for a transplant. Not even to simply have lunch or a cup of coffee with family or friends. [...]

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Tags: Cystic Fibrosis, Dr Mark Wylam, lung transplant, Nursing, Patient Stories, transplant

June 26th, 2014 · Leave a Comment

College Student Overcomes Anti-NMDA Receptor Encephalitis

By Susana Shephard

In her early 20s, Erin Ayub has big plans. As a college student in El Paso, Texas, she is also a musician and aspiring writer. She had to put her plans on hold for a bit while in a medically induced coma at Mayo Clinic in Arizona due to a rare illness — anti-NMDA receptor encephalitis.

Now on the road to recovery, Erin and her mom share her story in this video.

Tags: Arizona, encephalitis, Erin Ayub, Mayo Clinic, Neurology & Neurosurgery, patient story

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