Written by Bethany Henthorn
Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS – omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. After Mallory’s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System – Red Cedar in Menomonie.
We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth. This monitoring involved several tests, ultrasounds and appointments. Mallory was born at 38 weeks' gestation at Mayo Clinic Hospital, Methodist Campus, on Oct. 19, 2014.
The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. It was explained that Mallory’s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect.
Mallory spent her first 83 days at Mayo Clinic. Most days were in the Neonatal Intensive Care Unit, but the last few weeks were on the general pediatric floor.
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Andrea Liptac describes her journey to Mayo Clinic as a "winding road."
She first learned about Mayo in the early 1990s, when she was living in Montana with her family. At that time, her mother, Kelli Liptac, was diagnosed with idiopathic dilated cardiomyopathy and congestive heart failure, and was referred to a specialist at Mayo Clinic's Rochester campus. Her chronic conditions would warrant multiple trips to Rochester over the years. She would ultimately land on the heart transplant list.
As Andrea approached college graduation in 2004 and began to consider where to apply her education as a laboratory technologist, she recalled her mother's visits to Rochester.
"My mom's treatment at Mayo Clinic indirectly influenced my decision to work here," Andrea recalls. She applied to work as a laboratory technician in the Protein Immunology Laboratory at Mayo and has remained in that role ever since.
Unfortunately, Andrea's Mayo Clinic experience went beyond her employment. She would learn she and her mother shared more in common than she knew, leading her on a a surprising and difficult journey she says gave her a different perspective on Mayo Clinic and a new understanding of the patient experience.
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My head pounded incessantly. With every sip of water, I felt like I was swallowing razor blades. I coughed and wheezed so hard that my stomach muscles ached. But as sick as I was, this would be one of my healthiest days, because a visit with a vigilant nurse practitioner at Mayo Clinic may have saved my life.
After feeling really crummy for several days last spring, lying in bed "drinking plenty of fluids," and hoping whatever was ailing me would pass, I decided that I had waited long enough. I visited Mayo Clinic Express Care at one of the Hy-Vee Grocery stores in Rochester, Minnesota. That's where Dawn Kaderabek, a Mayo Clinic nurse practitioner, diagnosed me with Influenza B. She also noticed something unusual.
While listening to my heart, she heard a whooshing sound and asked if I had ever been told about a murmur. I said no, I hadn't. She told me that murmurs are not always dangerous but recommended that I get this checked out sooner rather than later.
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Heads turned when Aries Merritt walked into the lobby at Mayo Clinic Hospital in Phoenix at 5 a.m. on Sept. 1, with family and TV cameras in tow. Just four days earlier, he won a bronze medal in the 110-meter hurdles at the 2015 World Championships in Beijing. But, on this day, facing one of his biggest hurdles, he was about to undergo a lifesaving kidney transplant.
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A second opinion at Mayo Clinic helped Harold Magy return to the active schedule he loves
For years, Harold Magy was familiar with the inner workings of Mayo Clinic. As a mechanical engineer for more than two decades with a company that frequently worked with Mayo, he knew the ins and outs of many of the clinic’s complex mechanical systems in Rochester, Minnesota. But during that time, he was never a patient at Mayo, and he never thought he would be.
"I have had heart problems for a long time," says Harold. "I always took care of it with my local doctors. I didn't think about going anywhere else."
That changed in the summer of 2013. Harold's health had slowly deteriorated to a point that he had very little energy and spent most of his time at home. His wife, Judy, ultimately insisted he seek another opinion about the best treatment for his heart condition. Today, Harold is extremely grateful for his wife's persistence. Thanks to a revamped treatment plan developed by his physicians at Mayo Clinic, now at age 88, Harold has returned to working and teaching on a regular basis.
"Since I went to Mayo Clinic, I've gotten better and better," he says. "I feel mentally sharp, and I'm back to doing what I love."
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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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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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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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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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Sometimes even doing everything right to live a healthy lifestyle isn’t enough to ward off a serious illness.
Such was the case of 67-year-old Donald Glynn of Jacksonville, Fla., an avid runner who has participated in countless marathons, half marathons and 5K races over the last 30 years. He also watched his diet, weight and blood pressure, and did most of the things you’d expect of someone who led a healthy lifestyle. But Donald, who worked as a surgical assistant at Mayo Clinic in both Rochester and Florida before his retirement, neglected one thing — regular checkups. Given his family’s history of heart disease (his mother, grandmother and grandfather all had it), that turned out to be a serious mistake.
After experiencing an irregular heart rate earlier this year, Donald was shocked to learn that his arteries were severely blocked and that he’d need a heart transplant. His condition was serious enough that while waiting for a new heart, he’d need to have a left ventricular assist device (LVAD) implanted to help his damaged heart function properly.
“Needless to say, given my lifestyle and being a runner for so many years, I was stunned to hear about the condition of my heart,” he says. “I thought I was doing everything right, but given my family history, it apparently wasn’t enough.”
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Written by Eunice Nishimura
My journey started innocently enough as a neck strain I received while playing with my daughter’s golden retriever in October 2010. As the year ended, the discomfort had increased, and I sought out my physician in January 2011. He set up appointments for MRI and MRA exams. Once done, I quickly ended up at a level I Trauma Center, where I was diagnosed with a tumor on my C3 spine. The full diagnosis was stage IV non-small cell lung cancer with spine and lymph node metastases. The lung tumor was inoperable due to its proximity to the pulmonary aorta. Within 48 hours, the lymph node was removed, and I began radiation on the spine tumor, which lasted 3 weeks.
During that period, a cousin in Southern California suggested I contact Mayo Clinic in Arizona for a second opinion and gave me the name of Dr. Helen Ross. I had my consultation with Dr. Ross on Feb. 7.
From our first meeting with Dr. Ross, both my husband and I developed a trust and respect for her that continues to this day. Dr. Ross presents a forthright, open and considered respect for me not only as a patient but also an individual. She does not sugarcoat her evaluations. She always questions what has been done in the past and then takes it one step further.
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JoAnna Goebel refused to let diabetes stop her from welcoming a healthy baby into the world
When soon-to-be moms find out they are pregnant, many are eager to share the happy news with loved ones. When JoAnna Goebel learned she was expecting, she got on the phone, too. One of her calls wasn't to a family member or friend, though, but rather to the Diabetes Technology Clinic at Mayo Clinic in Rochester.
"I knew I needed to connect with them right away," says JoAnna. "I found out I was pregnant on March 4, and I called them on March 4."
Diagnosed with type 1 diabetes when she was 19, JoAnna realized that pregnancy posed unique health challenges for her and her baby. She was focused on overcoming those challenges. And with the help of her Mayo Clinic obstetricians and staff in the Division of Endocrinology, she was able to do just that. On Oct. 24, 2013, JoAnna delivered a healthy six-and-a-half-pound baby girl, Isabella, just two weeks shy of her due date.
"I understood that being diabetic and having a baby would put me in a high-risk category," JoAnna says. "But it's not like it was back in the 80s. People often think of the movie 'Steel Magnolias.' That's not the way it is anymore. I was bound and determined to stay healthy throughout my pregnancy. The wonderful care I received at Mayo Clinic helped make that happen."
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