Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Hoyt Finnamore (@hoytfinnamore)

Mayo Clinic Department of Public Affairs. Editor, Sharing Mayo Clinic and In the Loop. 

Activity by Hoyt Finnamore

Hoyt Finnamore (@hoytfinnamore) posted · Thu, Aug 14 4:36pm · View  

A Kidney Between Friends

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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Hoyt Finnamore (@hoytfinnamore) posted · Sat, Aug 16 7:56am · View  

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

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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Paula Shaner (@paulashaner3) responded:

Jerry, That piano holds magical powers. My son loved/loves sitting there and "making" music. It's always been a highlight through his bone marrow transplant journey. He started at 14 mo old and is hitting the big notes at 5 yo. Love the magic music holds at Gonda.

Posted Wed, Aug 13 at 9:46pm CDT · View

bets (@bethcr) responded:

Jerry, I LOVE this poem! It says it all! But what really struck me was the line that says "walking along to find that appointment of hope" I remember that feeling so well! And "a cross section of our world walking together" How true that is. If everyone could experience the peace at the Mayo, maybe our worlds/country wouldn't be so divided. I've learned so much on my journey to find answers,but what I hold [...]

Posted Sat, Aug 16 at 7:56am CDT · View
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Hoyt Finnamore (@hoytfinnamore) posted · Tue, Jul 29 7:57pm · View  

A New Approach to a Difficult Cancer Diagnosis

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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Bonni (@gemie1) responded:

I am surprised that Dr. Lewallen pioneered a hip replacement made from tantalum. Did he work on the material or did he already use an existing product and found a new use for it? I will say that my experience with Dr. Lewallen was very negative. My case was complex and my care was not adequate. Without going into the details, I had to go and see an Orthopedic Surgeon at the Hospital For Special [...]

Posted Tue, Jul 29 at 7:57pm CDT · View
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Hoyt Finnamore (@hoytfinnamore) posted · Wed, Jul 16 5:06pm · View  

Air Ambulance Ride Confirms Family’s Gratitude for Mayo Clinic

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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Hoyt Finnamore (@hoytfinnamore) posted · Mon, Jul 7 4:19pm · View  

Nicole’s Journey From Nurse to Transplant Patient and Back

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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Lady Di (@ladydi_49) responded:

So happy for you Nicole. Your story caught my eye because I have a 32 year old son with CF. I was originally surfing the Mayo Clinic website to find out about minimally invasive heart valve repair/replacement stories and did happen upon one. I have 2+ tricuspid regurgitation, and trace mitral and pulmonic valve regurgitation. I have been a nurse for 25 years so I know things can worsen over time. I'm pretty sure this [...]

Posted Mon, Jul 7 at 4:19pm CDT · View
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Hoyt Finnamore (@hoytfinnamore) posted · Tue, Jun 24 9:09am · View  

Second Opinion Leads to a Second Chance at Sight

Mayo Clinic patient Audrey Dean.Audrey Dean has been a lifelong advocate for social justice. After a notable career in social work, she earned a law degree and became senior counsel for the Alberta Human Rights Commission in 1992. At age 75, she is still arguing cases — some before the Supreme Court of Canada. “It’s fortunate that the government of Alberta doesn’t have mandatory retirement,” she says wryly.

The Alberta government had no intention of ending Audrey's career. But in 2009, it looked as if failing eyesight might. The crusading lawyer, who had always had perfect vision, began having trouble reading and driving.

She consulted with a local ophthalmologist, who diagnosed cataracts and recommended surgery to remove them. But unconvinced of the diagnosis, Audrey sought a second opinion at Mayo Clinic in Arizona.

This wasn’t her first experience with Mayo Clinic. Years earlier, her husband had consulted physicians there after learning he had cancer. And she had been seen doctors at Mayo about her own hearing loss — the result of radiation therapy for non-Hodgkin’s lymphoma. When she began having eye problems, she felt Mayo Clinic was the obvious choice.  [...]

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Hoyt Finnamore (@hoytfinnamore) posted · Wed, Jun 11 4:00pm · View  

Near-death experience brings second chance, new calling

Nancy Capelle with emergency medical technician Mike Szumagala, whose quick actions helped save her life.

Nancy Capelle with emergency medical technician Mike Szumagala, whose quick actions helped save her life.

On May 14, 2011, Nancy Capelle, a wife and mother of two young daughters, clinically died at the age of 40. She suffered spontaneous coronary artery dissection (SCAD), a condition that blocks blood flow to the heart causing a heart attack, abnormalities in heart rhythm and sudden death. But thanks to the quick actions of a paramedic, she is alive today to tell her harrowing story of life and death.

What was so hard for Nancy to comprehend following her medical emergency, she says, was that in a blink of an eye and without warning, healthy young women can be stricken by SCAD and die. Yet it didn’t appear from her research into the condition that the medical community was actively researching the tragic phenomenon. Perhaps it was because it was considered so rare that support for such a study would be difficult to find, she thought, or that finding enough SCAD survivors would be even more problematic.

Then Nancy came across an article in the Aug. 30, 2011, edition of The Wall Street Journal titled, “When Patients Band Together -- Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On.” For Nancy, this article changed the dark face of SCAD dramatically, and she would find herself and many other young women just like her able to see daylight again. [...]

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Hoyt Finnamore (@hoytfinnamore) posted · Fri, May 30 4:59pm · View  

Untangling a complex medical challenge

Amy Supergan with family members in Sienna, Italy.Amy Supergan has battled a host of difficult and painful disorders. Now she's found a way back to enjoying her life and her family.

In the summer of 2013, Amy Supergan took a trip to Italy. That may not sound extraordinary, but there was a time when being able to travel and enjoy a vacation with her family seemed like an impossible goal.

Amy faces a range of challenging medical problems, but at the top of that list is pain so debilitating she was forced to quit her career and give up an active lifestyle. But through the care she has received at Mayo Clinic and her participation in an innovative clinical research trial, Amy has found a renewed ability to manage her pain, and enjoy friends and family when she is able.

"Although I may never ski again or be back at work, with the help of all of my doctors at Mayo, I am now able to live independently with some assistance," she says. "I have found happiness in being more relaxed and appreciating some of the smaller things in life. I don’t feel like I’m missing out on life as I did before." [...]

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