Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Unfortunately, we cannot provide second opinions or make specific treatment recommendations through this correspondence. Here is the link to Mayo Clinic's International Services: http://www.mayoclinic.org/international/. If you would like to be evaluated here, they will be able to advise you on how to proceed.

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Dr. Pardi responded as follows: "At Mayo, SM is generally treated by a gastroenterologist. In our division, there is a team of doctors in the General GI clinic who sees these patients. Collectively, we have seen over 200 patients with this diagnosis. The frequency of follow up varies greatly based on the details of an individual case and the ability of local doctors to provide some of the follow up needed after consultation at Mayo."

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We will make an inquiry in to your questions and if we can address it through this medium, we will do our best to follow up. Thank you.

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While we cannot make specific treatment recommendations through this correspondence, here is some general information that may be helpful: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/treatment/con-20037148. If you would like to seek help from Mayo Clinic, please call our appointment office at: 507-538-3270. Thank you.

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Mar 7, 2014 by mayoclinic · 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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bjac278758

bjac278758 responded Mar 11, 2014 · View

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.

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Feb 27, 2014 by mayoclinic · 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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Feb 24, 2014 by mayoclinic · 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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Feb 21, 2014 by mayoclinic · 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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Feb 14, 2014 by mayoclinic · 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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Jan 30, 2014 by mayoclinic · 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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Jan 17, 2014 by mayoclinic · 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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Jan 15, 2014 by mayoclinic · View  

From the Alaskan Woods to Top of the Transplant List

Dennis Chavez with his children, Perry, Sparrow, Zach and Destiny.

Dennis Chavez with his children, Perry and Sparrow, left, and Zach and Destiny, right, following lung transplant surgery.

The first sign something was wrong came when Dennis Chavez was out hunting caribou with his wife, Maria. The Wasilla, Alaska, native suddenly found that he couldn’t cover ground like he used to. He quickly became winded — much more quickly than he expected.

He ignored the signs for a while. But one day a few weeks later, he found he could barely make it up a flight of stairs. He was breathing hard. His face was gray. His wife and daughter knew something was wrong. They got him on a flight to Anchorage, where after a series of tests and a biopsy, his doctor determined that his heart was enlarged and his lungs were hardening. Then his lungs collapsed.

The diagnosis was Langerhans, a rare disease where, according to the National Institutes of Health, immune system cells build up in the body causing a range of problems, as well as pulmonary hypertension. He would need a double-lung transplant.

Chavez's doctor in Anchorage told him he was going to need to be seen at a larger medical center equipped to do transplants and handle a complex case like his. Chavez and his wife did some research and decided their first choice was Mayo Clinic. What they learned was reinforced by his doctor.

"My doctor said, 'Mayo Clinic is the best place in the world,'" Chavez says. "I wanted to go to the best place.

Getting to Mayo Clinic, it turned out, wasn't going to be so easy. [...]

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ahmaniellehall

ahmaniellehall responded Jan 20, 2014 · View

Hello, #MCCSM team! Great story.

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Jan 8, 2014 by mayoclinic · View  

Richard Rubenstein: Overcoming Rectal Cancer

Richard Rubinstein in his photography studioA routine colonoscopy in 2007 saved Richard Rubenstein’s life. Richard, a retired executive from Scottsdale, Ariz., had expected to receive a clean bill of health, especially since he had no alarming symptoms or any family history of colorectal malignancies. Instead he received shocking news – he had stage 3 rectal cancer.

Richard decided to pursue his treatment at Mayo Clinic in Arizona. Specialists recommended radiation treatment and chemotherapy prior to surgery, with the hopes of reducing his four-centimeter tumor. The treatment proved successful and surgeons removed a significantly smaller mass. More chemotherapy followed and ultimately he had a final surgery to reverse his ileostomy. [...]

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Jan 7, 2014 by mayoclinic · View  

Ginette's Top Tips for Breast Cancer Patients and Those Who Love Them

Ginette Weiner

Ginette Weiner began her fight against breast cancer in 2008, and underwent surgery, chemotherapy and radiation therapy. She is a patient at Mayo Clinic in Arizona and under the ongoing care of Donald Northfelt, M.D. She brings a fresh, honest and engaging perspective to patients and their loved ones with the following advice for breast cancer patients and their families.

Advice for Loved Ones

1.  Do not tell us cancer or things like it "happen for a reason." A well-meaning family member said this to me shortly after I was first diagnosed. It literally took my breath away, and left me feeling cold and numb. We feel as if we're already being somehow "punished" by the universe as it is. Telling us there is a "reason" we have cancer is not helpful. (Did I get cancer because I'm a bad person?) I don't believe my cancer happened for a "reason." It just happened. Better to say things like, "I'm sorry this happened to you," or "It must feel so unfair, I'm sorry." And leave it at that.

2.  Create a safe atmosphere (non-judgmental, non-critical), for us to be allowed and encouraged to vent, rage and share the wide range of feelings we have, some of which may be seen as childish, fearful or irrational. Practice becoming a good listener. Allow for silence. You can silently be there for us sometimes, unconditionally accepting of us. Men often feel they have to help, to "fix it." You don't have to fix it. Being quietly there and letting us know you're there for us for the long haul, regardless of whether we're sad or angry, these things are helpful. [...]

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Dec 20, 2013 by mayoclinic · View  

Living Life to the Fullest After Epilepsy Surgery

Jill Staloch before and after

Jill Staloch with her daughter -- left, in the hospital in May 2012, before her first surgery, and right, in July 2013.

My name is Jill Staloch, and I had my first seizure when I was a freshman in college. Epilepsy never impacted my life, besides having to take medications and having a yearly appointment with my doctor. It wasn’t until 2010 that my life changed because of seizures. I had been seizure free for at least 10 years, but during my pregnancy, I started to have multiple seizures weekly.

During this time, I was worried about my baby’s health, I could no longer drive or be left alone, I was having difficulties doing tasks at work, and I eventually had to be on bed rest. Even after delivering a healthy baby girl, I continued to have seizures. I still was unable to drive and couldn’t be alone with my daughter, and my family worried about me. Epilepsy had taken control of my life. My husband researched different ways we could get help. He said we needed to go to the Mayo. I was resistant but knew something different had to be done.  [...]

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Dec 19, 2013 by mayoclinic · View  

Living Donors Help Family Members Battle Kidney Disease

Adam Gray (left), kidney donor, shares a fist bump with his cousin and kidney transplant recipient Trey Sullivan.

Adam Gray (left), kidney donor, shares a fist bump with his cousin and kidney transplant recipient Trey Sullivan.

Written by Jane Sullivan Horne

When I received a kidney from my brother David 10 years ago at Mayo Clinic in Florida, little did I know that someday my only son would have to undergo the same life-saving procedure after suffering from the same rare kidney disease that has plagued my family for several generations. Nor could I imagine that my brother’s son, Adam, would also give the same life-saving gift to my son, Trey, just 10 years later.

Several of my family members have suffered from a rare genetic kidney disorder called FSGS (Focal Segmental Glomerulosclerosis), which causes scarring of the kidney and the eventual loss of function. According to the National Institutes of Health, which is studying our family’s history with this disease, mine is one of only 20 families in U.S. with this genetic pattern afflicting several generations of relatives.  My father died of end stage renal disease when I was only 11 months old. My father's mother, and two of his brothers, also died of the disease. And the only exposure we’d had to transplants was in 1970 when our mother gave our brother, James, one of her kidneys. I eventually was diagnosed with FSGS and now my 26-year-old son, Trey, has it.  While there is no cure for FSGS, a kidney transplant can give the patient a high quality of life for many years. I am truly an example of that now, more than 10 years after my transplant surgery.

[...]

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Dec 12, 2013 by mayoclinic · View  

Boo Maddox takes on H1N1, dialysis, and complications on his way to a successful kidney transplant

Boo Maddox

A year ago, the Robert Maddox family from Boyce, La., would never have imagined attending the 50th Anniversary of Kidney Transplantation celebration event at Mayo Clinic this month. A year ago, their 9-year-old son Robert, who goes by the nickname "Boo," was struggling to survive, and a transplant seemed impossible.

After a devastating bout of H1N1 (swine flu) in 2009 when he was just 5 years old, Boo spent nearly 500 days in Children’s Hospital of New Orleans. After multiple surgeries, numerous transfusions, and months of uncertainty, he recovered and survived despite the odds. But he was left with renal failure, dangerously high pulmonary pressure, and susceptibility for recurring infections. Doctors told the family that he would never be a candidate for a transplant, and was destined for a life of dialysis and complications from the high pressure and infections.

Determined to find hope, Robert and Renee Maddox brought their son to Mayo Clinic last winter and met with the kidney transplant team. [...]

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Dec 3, 2013 by mayoclinic · View  

Child’s play — at long last

Deshawn Corbin

After heart surgery, Deshawn Corbin can run, jump and swim like a kid ... for the first time

Deshawn Corbin is just 15 years old. But he’s already experienced more life than most people many times his age.

Deshawn was born with complex congenital heart disease that affected the way blood traveled through his body and kept him from getting enough oxygen. His teenage mother, who’d had no prenatal care, realized she would be unable to care for a child with such special needs and gave him up for adoption. On the day he was born, Deshawn became a ward of the state and had his first open heart surgery. [...]

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Nov 25, 2013 by mayoclinic · View  

Identical Twins Share Genetic Makeup, and a Kidney

When Ernesto Boleaga learned that he needed a kidney transplant, the perfect donor, his identical twin brother, Jose Luis, was ready and willing to help. And because the Boleagas have the same genetic make-up, Ernesto’s body accepted Jose Luis’ kidney as its own.

For most patients, however, an identical twin donor isn’t an option, and they need to take medication to suppress their immune system so the body doesn't reject their new kidney. Doctors at Mayo Clinic want to change that.

The video below shows the Boleaga’s story and how Mayo Clinic physicians are researching ways to grow organs from a patient’s own stem cells. It's called regenerative medicine, and it offers hope for a solution to organ rejection.

http://www.youtube.com/watch?v=vAtPL0_EUiY

[...]

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Nov 20, 2013 by mayoclinic · View  

The Decision to Save a Stranger’s Life

A patient in need of transplant touches Dr. Phil Fischer's heart and prompts him to explore living donation. As a result, a patient in need of a kidney lives on, enjoying her grandchildren, golfing and dancing.  

The shortage of deceased donor organs has reached a crisis, with almost 120,000 people in need of a lifesaving organ nationwide. More than 3,000 of those people are Mayo Clinic patients. But for kidney, liver and bone marrow transplant patients, living donors can help shorten the wait time.

A recent survey found that nearly half of Americans would consider donating to a complete stranger — a statistic that has more than doubled in the past decade. It is becoming increasingly common for people to donate to family, friends and even strangers, so one of the 120,000 people on the wait list can receive the gift of renewed life.

One such donor is Phil Fischer, M.D., a pediatric and adolescent medicine physician at Mayo Clinic Children’s Center. In this video interview, Dr. Fischer tells how a patient in need of a kidney transplant touched his heart and prompted him to explore anonymous living donation, sometimes referred to as good Samaritan, non-directed or altruistic donation. Dr. Fischer’s selfless act of donation enabled a woman in need of a kidney to live a full life, enjoying her grandchildren and dancing.  [...]

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