Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

mayoclinic (@mayoclinic)

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mayoclinic (@mayoclinic) published a blog post Wed, Apr 2 9:13am · View  

The Team Behind Team Lola

Lola points to her scar from heart surgery

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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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mayoclinic (@mayoclinic) published a blog post Tue, Mar 11 9:22am · View  

Knocking “Care Coordination” Out of the Park

Barry BloomWritten by Barry M. Bloom

When I arrived at Mayo Clinic in Scottsdale, Ariz., that September day almost five years ago, my care for colon cancer was fractured and really a mess. I had suffered through a second bout of the disease, when the cancer jumped from the colon to the lung. After surgery to bisect the upper lobe of the left lung, I had just embarked on a six-month program of chemotherapy.

A local hospital had bungled the pathology from the original colon surgery in February 2008, discovered only when I went to a facility in Texas for a second opinion. As it turned out, at the time of the original colon resection, a trace of cancer was evident in a lymph node, doctors there discovered. Had my oncologist at the time possessed that information, he would have immediately placed me on a course of chemo. He didn't, and suddenly I had become a Stage IV cancer patient for the worst of reasons: medical error.

Just as bad, the surgeon who performed the original colon surgery did such a poor job sewing up my abdomen that it created an incision hernia. When she fixed the hernia, she told me she had inserted some mesh to pull the area together. That turned out to be false. The hernia surgery had to performed again. This time she demurred and sent me to another surgeon, who did the job properly.

No apology from the doctor or the local hospital has ever been forthcoming.

In the late summer of 2009, the second opinion confirming the spot on my lung, the biopsy, the surgery itself, and my first chemo sessions were reminded me of the times I was given flu shots in the pharmacy of a Safeway. My anxiety was at an untenable level, and as now the CEO of my own health care, I had learned an important lesson: the more doctors, clinics and hospitals involved without access to the same computer records, the greater chance for something to go wrong.

That's when Mayo Clinic became involved.

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bdjackson (@bjac278758) responded:

What a blessing for you. Continued good health to you. Northwestern Hospital has proven yo show the same care thus far. I am receiving CHEMO for colon cancer and six more treatments to go. I will receive results of my first CAT scan after first six rounds of CHEMO on Thursday. Praying it will show negative.

Posted Tue, Mar 11 at 9:22am CDT · View
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mayoclinic (@mayoclinic) published a blog post Fri, Mar 7 11:43am · View  

Game On! … in Ruth’s battle with depression

Ruth Tibesar and her physicians

Ruth Tibesar with the physicians she calls her "two knights" who she says inspired her and helped her in her battle with depression.

For many years, those lucky enough to share a work space with Ruth Tibesar, a lab technician at Mayo Clinic in Rochester, had come to expect to hear at least one thing when they came to work every day: Laughter. Because that's just the kind of person Ruth Tibesar is -- she enjoys making those around her smile. But a little more than two years ago, that laughter disappeared soon after Ruth's mother passed away. Soon after that, Ruth suffered a mild stroke while at work, and it was while she was in the hospital recovering that she says she began to feel herself change into a person she and those around her no longer knew.

"I was angry," Ruth says. "I wasn't talking to anyone. Something had changed. But then I just went on like nothing was wrong."

Once she left the hospital, however, Ruth began to realize something was, in fact, very wrong. "I started to withdraw from things and stopped talking altogether, which is odd for me," she says. "I began to isolate myself. That was a real trigger that something wasn't right." As were the sleepless nights. "Insomnia was another huge trigger for me," she says. "It gave me too much time to think."

Still, she didn't feel like she needed help. Instead, Ruth says she went on living this way until she reached a point where she eventually just "went numb" inside. "I got to a point where I felt nothing," she says. "I had no emotions. I just stopped caring. I felt like a piece of mud -- like nothing. There was no spunk. No drive for the next day."

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Bonni (@gemie1) responded:

What a powerful experience to share with others! There is not much I can say about your form of treatment, since I know very little about strokes, where it affected your brain or how much it contributed to your depression. What I can say is that you have a lot of inner strength and a will to survive and many times, life does feel like a game where we want to go across the finish [...]

Posted Fri, Mar 7 at 11:43am CDT · View
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mayoclinic (@mayoclinic) published a blog post Thu, Feb 27 4:36pm · View  

Diet restrictions inspire new career

Frances Shaw’s health and career mixed together in a muffin batter. With her perseverance and answers from Mayo Clinic, both her health and career as a baker and entrepreneur, are turning out golden.

Frannie Shaw with a package of her muffins.

Frances Shaw didn’t set out to be a baker. Her career essentially found her as she tried to find ways to manage her health and dietary restrictions, while still enjoying food.

In her senior year of college, while studying film, Shaw, now 25, suddenly found herself dealing with ongoing stomach and pain symptoms that had worsened dramatically. “I was really, really tired,” she says. And that wasn’t all. “I had bone pain and was instantly bedridden.”

Finding out what was wrong was not as instant, however. In fact, it was an odyssey that dragged out for seven years. “I saw every kind of doctor,” she says. Eventually, Shaw learned she had Celiac disease and an intolerance of dairy products.

After her diagnosis, Shaw eliminated gluten and dairy from her diet. “I did notice a big difference in how I felt,” she says. “But I was so hungry. It was hard to find the combination of gluten-free, dairy-free that tasted good.”

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mayoclinic (@mayoclinic) published a blog post Mon, Feb 24 4:14pm · View  

Trust Your ‘Gut’ When Experiencing Possible Signs of Colorectal Cancer

Grace De La Rosa, with guitar.

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Most people think that colorectal cancer is just an old man's disease, perhaps because current medical guidelines recommend regular screening begin at the age of 50. Truth is, this disease doesn't discriminate in age, gender or race.

Grace De La Rosa was 38 when she was diagnosed with Stage 3 Colon Cancer in 2005.  She has no family history of any type of cancer. She's married to a veteran Navy pilot and is a mother of two children, who were 14 and 3 at the time. She was a swimwear model, fitness instructor and fitness competitor. She worked out religiously and ate healthy foods. So that's when De La Rosa was shocked to hear the words, "You have cancer."

She had surgery to remove the golf ball-sized tumor from her colon and received chemotherapy for three consecutive days, every other week, for six months.

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mayoclinic (@mayoclinic) published a blog post Fri, Feb 21 11:04am · View  

Her Relay: Overcoming a Childhood Tumor to Being An Advocate for Life

Written by Erin Mobley, Adult BMT Data Specialist at Mayo Clinic in Florida

Erin Mobley at the age of 7 in 1993.

Erin Mobley at the age of 7 in 1993 on News Year's Eve (left) and Easter Sunday (right).

I wanted to go skiing for my seventh birthday, but instead I celebrated in the hospital with family and friends, and a pediatric oncologist. 

Two months earlier, in September 1993, on my first day of first grade, I had gotten sick and had a large amount of blood in my urine. I remember my mom picking me up early from school and taking me to the pediatrician, who promptly sent us to the hospital. Scans revealed a tumor about the size golf ball in my bladder. Using the latest technology available, doctors biopsied the tumor and determined it to be rhabdomyosarcoma, a soft-tissue sarcoma.

I had surgery the next day and soon began chemotherapy as an inpatient, using a treatment protocol established by what is now the Children’s Oncology Group (COG), an international organization devoted to childhood and adolescent cancer research. The chemotherapy treatment regimen required me to spend every other week in the hospital.

My wish to ski came true in March 1994 thanks to Dreams Come True, a local organization that helps children fighting life-threatening diseases fulfill their dreams. My family and I traveled to Winter Park, Co., where we skied, rode snowmobiles, went tubing and built snowmen! The real joy for me was being able to take a break from treatment and just be a kid. Of course, it gave my parents a vacation, too!

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mayoclinic (@mayoclinic) published a blog post Wed, Feb 19 8:07am · View  

Keeping a Positive Outlook Despite a Difficult Disease

Jayne BushmanFor her first 38 years, Jayne Bushman was a picture of health. But then one morning she woke up with an earache, something she says she'd never before experienced. Her first stop was to see her Family Medicine doctor at Mayo Clinic in Rochester who, unable to pinpoint the exact cause of her pain, sent her to Mayo's Department of Otorhinolaryngology. It was there that after a series of additional tests and examinations, Bushman learned she had much more than and ear infection. The diagnosis was Wegener's granulomatosis, a rare disorder that inflames the blood vessels and restricts blood flow to various internal organs.

The ear issues were simply one manifestation of the disease, which often affects the kidneys, lungs and upper respiratory tract. The restricted blood flow caused by the disease can damage these organs.

As Bushman listened to doctors explain her diagnosis, she says she felt "shocked." That only got worse after she went home and began using the Internet to research her disease. "The very first thing I did after my diagnosis is what a lot of people do, which is the very wrong thing," she says. "And I now tell any person I meet or talk to online who gets diagnosed with Wegener's disease to stay off the Internet. It'll do nothing but scare you. That's exactly what it did to me."

Still, Bushman says she only allowed herself to feel that way for a moment or two. "Initially, it was a huge shock," she says. "But I had three kids at home, I have a career … and I sure as heck wasn't going to let this get in the way of that. I've always tried to not live in my disease and to instead live with my disease.”

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mayoclinic (@mayoclinic) published a blog post Fri, Feb 14 2:48pm · View  

Transitional Care Team Helps Sandy Dyson Get Back on the Dance Floor

If Proud Mary is playing, Sandy Dyson wants to be dancing. But last spring, it looked like Dyson’s dancing days might be behind her. After knee replacement surgery, the 71-year-old Kennebec, S.D., resident was in so much pain that just walking seemed like punishment.

Sandy and Dick Dyson

Sandy and Dick Dyson are back on the dance floor after rehab helped Sandy regain mobility after knee replacement.

Thanks to a “wickedly good team” of rehabilitation specialists in the Mayo Transitional Care program at Mayo Clinic Health System in Waseca, however, she was back on the dance floor by winter.

The Transitional Care program provides a step between hospital and home for patients, who are supervised by physicians and receive daily care from nurses and therapists. A multidisciplinary team of providers sets up an individualized plan of care for each patient designed to get them back home as quickly as possible.

“Without their help I wouldn’t be where I am today,” says Dyson.

When she arrived in Waseca three days after having surgery at Mayo Clinic, Dyson was in “excruciating” pain.

She understood that the pain she was experiencing wasn’t unusual immediately after knee replacement surgery, but Dyson was not happy about it. And not shy about letting people know it. But that didn’t scare staff away. Dyson says someone checked on her every 30 minutes the first week she arrived, always meeting her tears and frustration with kindness and encouragement.

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mayoclinic (@mayoclinic) published a blog post Thu, Jan 30 11:34am · View  

For One Couple, Expert Neurology Care Makes All the Difference

Barbara and Jim Smith

Mayo Clinic patients Barbara and Jim Smith

In one brief statement, Barbara Smith can sum up the impact that the staff in the Department of Neurology at Mayo Clinic in Arizona had on her and her husband as they faced several difficult and frightening medical problems: "They are our life-changing heroes." 

For 40 years, seizures were just part of life for Barbara. Dealing with them since she was a teen, she always assumed they were caused by epilepsy. But in 2007, the seizures became more frequent and more severe. At the same time, Barbara began having other problems, too. She developed a stutter and often had headaches. Walking became more difficult, and she had unexplained weight loss.

Barbara went to several neurologists. No one could provide her with answers. In desperation on a Friday evening, Barbara's husband, Jim, called Mayo Clinic to see if they could get an appointment. "That phone call changed my life," says Barbara.

Within a week, the couple arrived at Mayo Clinic in Arizona, where Barbara underwent two weeks of evaluation, including five days of observation in the hospital's epilepsy monitoring unit. Part of that evaluation involved using unique imaging technology known as SISCOM, or subtraction ictal SPECT coregistered to MRI. Pioneered at Mayo Clinic, SISCOM is particularly useful in pinpointing areas of the brain where seizures occur.

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mayoclinic (@mayoclinic) published a blog post Fri, Jan 17 5:20pm · View  

Dr. David Fleischer: Treating Esophageal Cancer in Kenya

Dr. Fleischer at Tenwek HospitalEsophageal cancer is a challenging enough condition to treat at the best medical centers in the U.S. When the condition affects scores of people in a developing country in eastern Africa, the challenge is all the more demanding.

David Fleischer, M.D., a gastroenterologist at Mayo Clinic in Arizona, and his colleagues, working in collaboration with Mayo Clinic in Minnesota, the National Institutes of Health (NIH) and Tenwek Hospital in Bomet, Kenya, were focused on a noble charge: to work with physicians and staff at Tenwek to intervene early when patients exhibit symptoms that could lead to esophageal cancer.

Dr. Fleischer notes that in many patients with esophageal cancer, the disease is so advanced by the time they present to a physician that only palliative care is possible. In many medical centers such as Tenwek, where several new cases of esophageal cancer are seen each week, the standard of care has been to outfit patients with a tube (stent) in the throat to assist with their swallowing. However, “swallowing a tube is not a cure,” he affirms.

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