Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Sharing Mayo Clinic feed

Dave Shoultz (@daveshoultz) posted · Mon, Jul 21 11:50pm · View  

We visited with the doctor about noon today. The leukemia (MDS/MPN) I was diagnosed with 2 1/2 years ago has become active. They have not established a firm treatment recommendation yet but it sounds like I will be getting chemo treatments 5 days a month for 4-6 months. The hope is that my bone marrow will start again making white cells and that my neutrophils will increase over this time. Until that happens I will need to be very cautious about eating any uncooked food and I will be wearing a mask everywhere I go.
We will again visit with Mayo the 14th of July when they will firm up the treatment recommendations.

Lynne and I appreciate all your prayers, encouraging words, and the support we are receiving.
We took in a lot of information this morning and we still are trying to handle it. God Bless Dave

Dave

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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 4:33pm · View  

The Team Behind Team Lola

Lola points to her scar from heart surgery

Most 13-year-old girls wouldn't see having a scar down the middle of their chests as cool. Lola Montilla, however, is not your average 13-year-old girl. When she looks at the scar on her chest from the surgery she had at Mayo Clinic to repair the Ebstein’s anomaly heart defect she was born with, she says it serves as a reminder that what doesn't kill us does indeed make us stronger.

"I really, really like my scar," Lola says, from her home in Puerto Rico. "Every time I look at it, it makes me think, 'Wow, I really did go through this, and I'm now back here at home.'"

Her mom, Mari Serrano-Montilla, says she and her husband learned that Lola would be born with Ebstein’s anomaly -- a rare heart defect that causes blood to leak back through the tricuspid valve, forcing the heart to work much harder than normal -- late in her pregnancy. "Our doctors here in Puerto Rico said she might need surgery, but it was a matter of just seeing how much progress she made," she says.

Outside of not being able to participate in competitive sports in school or go on any of "the cool rides" when her family visited Disney World, Lola lived the first 12 years of her life without much complication or difficulty. But then, just before her 13th birthday, things began to change. [...]

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Lady Di (@ladydi_49) responded:

Sooooo happy for you and your family Lola. I have 2+ tricuspid regurgitation and trace mitral and pulmonic valve regurgitation. I have palpitations and on occasion my heart races. So far my cardiologist doesn't recommend surgery but as a nurse I'm thinking it will get worse over time. And you know what they say, nurses and doctors make the worse patients! Reading your story has helped me to not be afraid if I have to [...]

Posted Mon, Jul 7 at 4:33pm CDT · View
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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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