Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Jul 23, 2013 · Mickala the miracle: A survivor and an inspiration

Mickala Morinville

“We knew if she made it to Mayo Clinic, she would make it,” says Judy Morinville of the September day Mayo MedAir airlifted her teenage daughter to Mayo Clinic. Mickala Morinville did make it, and her journey serves as a reminder of the miracles that can happen when you combine Mayo expertise with a higher power and a determined patient.

Mickala was in a dire situation. Her lungs were destroyed, likely by a virus, and Mickala struggled to get enough oxygen. Even getting her to Mayo was a challenge. An extracorporeal membrane oxygenation (ECMO) machine was oxygenating Mickala’s blood. Because of the complexity of transporting these patients, most cannot move to another facility. Thankfully, Mayo MedAir has expertise that made her trip to Mayo possible.

As her parents made the stressful drive from their home in northern Minnesota to Rochester, Roxanne Pike, M.D., Anesthesiology, and Rakesh Suri, M.D., D.Phil., Cardiovascular Surgery, were busy in the operating room trying to save their daughter’s life. They stabilized Mickala and placed her in the care of the staff on the intensive care unit.

Still, Mickala struggled. Even with an ECMO machine helping oxygenate Mickala’s blood, she was not getting enough oxygen to recover. Her health continued to deteriorate, and Mickala eventually landed on the heart, lung and kidney transplant lists.

“Things were looking very desperate. She had renal failure and was on dialysis. Her heart wasn’t functioning properly. And she had severe lung injury without recovery after six weeks,” says Gregory Schears, M.D., Anesthesiology, who lead Mickala’s care team and is the medical director of the ECMO service. “Honestly, if you would’ve had that situation a couple of years ago, we would have withdrawn support.”

But, the team wanted to fight for the young patient with so much in front of her. Mickala’s team gathered to discuss the options. Eventually, they decided to move the tube connecting her heart to the ECMO machine directly into her chest. It was risky move, but one Mickala’s family and care team were willing to try. “If anyone could do it, we knew she could,” says Dr. Schears. “And something just said we should really go to the wall.”

“Scott and I sat downstairs and waited for that surgery to take place, not knowing what the outcome was going to be,” says Judy. “Dr. Suri came and talked to us before the surgery and he just basically said I’m going to do my best but ultimately it’s out of my hands. Its up to a higher being than we are.”

In retrospect, these tense moments were the start of Mickala’s fight back.

As Judy and Scott, Mickala’s dad, sat anxiously waiting, Scott had a feeling that everything would be okay. “We were just sitting there and Scott said, ‘I just felt something come over me. She’s going to be okay. I can just feel it, she’s going to be okay,’” recalls Judy.

Repositioning the tube allowed Mickala to finally get enough oxygen. “It was the best thing that could happen,” says Dr. Schears. “Over the ensuing weeks, we saw recovery of her heart, recovery of her kidneys. And improvement of her lungs.”

After 116 days, Mickala was finally strong enough to leave the ECMO machine. She moved to a rehabilitation unit in February, and finally in April, she was ready to go home a record holder ­– 116 days is the longest anyone in the country has been on ECMO and left the hospital. “This prolonged duration of ECMO support was possible because of the amazingly talented people we have involved in her care,” said Dr. Schears.

However, that record is a small part of the legacy she leaves with her care team and fellow patients. “She’s a go getter. She’s got a lot of energy and a great attitude,” says Dr. Schears. “Once she became mobile, she would visit other patients. She helped spread some of her energy to other people.”

Her departure came complete with heartfelt goodbyes, threats to crash her upcoming prom, balloons in Mickala’s favorite colors and recounts of her long journey, making it clear that Dr. Schears sentiment was shared by an entire care team that Judy estimates numbers in the hundreds.

She drove away from the hospital giving her care team the classic Mickala thumbs up and a sense of gratitude for her care team. “I owe a lot of this to the team here. If one person was missing, it just wouldn’t be complete from the therapists to the doctors to the nurses who saved my life,” says Mickala. “I can’t even express or thank them enough for all they’ve done, not just cared for me, but been my friend through this really long journey. That definitely kept me going.”

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Jul 23, 2013 · For patient in Honolulu, Mayo Clinic is just one click away

Traci Downs with her husband, Hunter, and son, Aidan

Living in Hawaii definitely has its benefits — the beautiful scenery, the tropical weather, the ocean. But, what if you are living with a chronic condition and there aren’t any specialists on the island? For Traci Downs, the answer was Mayo Clinic and Patient Online Services, a tool that enables patients to connect with Mayo Clinic anytime, anywhere.

Downs is a neuroscientist and the chief operating officer of a technology company that she and her husband started. She became a Mayo patient in 2003, when she was diagnosed with primary sclerosing cholangitis — a chronic inflammatory disease of the bile ducts that can lead to liver damage. Being more than 4,000 miles and four time zones away from Mayo Clinic has been a challenge for Downs — not only because she has to travel back and forth for appointments, but also because of the amount of time it takes to get tests done and see the lab results. But now, thanks to Patient Online Services, she can get immediate access to her lab results, message her care team and make informed decisions regarding her care.

In the past, when Downs needed to have blood work done, she’d go to the local hospital in Hawaii, and her samples would be sent to Mayo for processing and analysis. Then she’d have to wait for another week to get the results. “Now I can go online and find out what’s happened,” she says. “I can make decisions faster and the docs can make decisions faster, which is very important when there’s a blockage in your liver.” She also uses the secure messaging feature when she needs to contact her care team. “I don’t have to call someone and play phone tag for days because they’re busy,” she says. “If my care coordinator is busy, someone else will get back to me.”

After her appointments, she can log in to review her doctor’s clinical notes and remind herself of everything they talked about. The notes are also helpful for coordinating with her local doctors. “Organizing medical records is a pain,” says Downs. “Now it’s all there in one place. And if I have to go to some other doctor and he wants to know my labs from two years ago, I can go online and pull it up for him. It’s really amazing, I’m so excited about this.”

“It’s essential to be proactive about your own health care,” says Downs. “I think Mayo is the best medical center in the world. I love the doctors here and the atmosphere, and quality of care. But, you still need to be involved in your own health care and be an advocate for it.”

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Using Patient Online Services

If you aren’t using Patient Online Services yet, click here to create your account. For on-the-go access, download the Mayo Clinic Patient app.

 

May 31, 2013 · Born Deaf and My Miracle of Sound

Lexi GrafeI was born profoundly deaf due to auditory neuropathy and did not hear a single sound until I received a cochlear implant when I was 4 ½ years old. My parents said that I was always a happy, sweet child and I was born with a smile on my face and a twinkle in my eye. Throughout my life, I’ve had to deal with many obstacles due to my deafness that most people don’t have to deal with. However, my cochlear implant, this miracle of sound, gives me an appreciation of sound and richness to life that others may take for granted. Through it all, I’ve held onto my belief that you shouldn’t just live life, but love it!

Many people have told me that I have limitations, but I’ve always taken those statements as challenges. I am currently attending the University of Denver, which is a gorgeous university only an hour away from the mountains. My cochlear implant has also allowed me to be a role model in my community. As a Peer Educator with HYPE, I travel throughout the campus and talk to students about issues that are prevalent at their age, such as body image, STI’s, contraception, alcohol awareness and values and decision-making. I’m also holding a chair position in Delta Zeta, which is a sorority on campus, and our philanthropy is the House Ear Foundation for the hearing and speech impaired.

I also wrote a curriculum on bullying; and with the help of others, taught the class locally and throughout Minnesota. In 2012, I was awarded the Service to Mankind Award from the Sertoma 1200 Club in Rochester, Minnesota. I was also addtionally later awarded the Service to Mankind Award at the District level. This is the highest recognition given by Sertoma to non-Sertomans. In 2013, I was blessed enough to be the recipient of the prestigious Cochlear Graeme Clark Scholarship Award. I am additionally going to be an intern in Denver for Cochlear America during the summer, which is an opportunity I am very excited to have!

Some people, upon hearing that I was born deaf, feel badly for me. I have no qualms in saying that if I wasn’t deaf, I would not be the person I am today. I am stronger and more confident than I would ever be if I had been born hearing. I believe that a person’s true character can be seen in how they respond to adversity. I will continue to rise to any challenges I face in the future. I have never let my disability define me and I try to set an example that there are no limitations to what I can achieve. I’m proud to be a Cochlear recipient.

The Mayo Clinic is the reason my family lived in Rochester and the reason I am where I am today. Throughout my countless years of appointments in a multitude of different departments I have become the woman I am today. No matter where you go in Mayo, you will find nothing but genuine compassion and long lasting bonds. Mayo Clinic has been an invaluable resource for my family and I.

Written by: Lexi Grafe

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May 22, 2013 · Mayo Clinic Young Volunteers - W.E. C.A.R.E.

Volunteering at Mayo Clinic is an awesome opportunity and our Mayo Clinic Young Volunteers here in Rochester, Minn., are proud to be part of this world-class institution. Team Leaders on our MCYV Council wanted to showcase some of the qualities of our volunteers, and W.E. C.A.R.E. is an acronym that represents these qualities. I completed this video project this spring hoping to demonstrate how volunteers make a difference at Mayo Clinic.

-Rushil Patel, MCYV Team Leader

May 13, 2013 · Girl Scout Dr. Sharonne Hayes Receives Award

Dr. Sharonne Hayes, a Mayo Clinic cardiologist, in April was named one of the Girl Scout River Valleys 2013 Women of Distinction.

When Dr. Hayes began working at Mayo Clinic, she became keenly aware that women in medicine, and particularly in cardiology, were still a minority. As she began her career in cardiology, she also saw the unique needs of women suffering from or at risk for cardiovascular disease, so in 1998 she founded Mayo Clinic’s Women’s Heart Clinic, one of the first in the country. The clinic provides sex-and gender-based cardiovascular care and women-focused research with a goal to improve clinical outcomes and advance the science. As a pioneer in the women’s health field, Dr. Hayes is a nationally recognized educator and advocate for women’s cardiovascular issues. She serves on the Board of Directors of WomenHeart: The National Coalition for Women with Heart Disease. In addition to her role as cardiologist, Dr. Hayes also became the first director of the Office of Diversity and Inclusion at Mayo Clinic in 2010.

Dr. Hayes has been a Girl Scout for as long as she can remember and credits her mother for her positive experience in scouting. She believes in the power of the Girl Scout sisterhood and knows all girls have the potential to be leaders who can make the world a better place through service.

Since 2009, Girl Scouts River Valleys has annually honored local role models whose professional accomplishments, leadership and community contributions inspire girls to reach their highest potential.

Apr 18, 2013 · Atlanta to Jacksonville: Short travel for answers from Mayo Clinic

Diane McIverDiane McIver’s first visit to Mayo Clinic mixed health care with pleasure – she and her now husband tagged their annual physical appointments with a trip to the golf course. At the time, they were just dating and enjoyed “a fabulous mini vacation combining our health care with an activity we both love!” exclaimed McIver. 

Their first visit was around 10 years ago at Mayo Clinic in Scottsdale but since they live in Atlanta, Mayo Clinic’s Jacksonville campus has been their main location. It only takes a one-hour flight for them to get answers from Mayo Clinic.

McIver and her husband have visited other facilities in Atlanta but enjoy the convenience, location and friendly staff at Mayo Clinic. “The people who work at Mayo Clinic are absolutely the friendliest, nicest, and most professional team I have ever been associated with,” says McIver. 

With their Mayo Clinic care team, the McIvers are typically able to get all of their necessary exams done during the day and walk away with their test results at the end of the day. Through Mayo Clinic’s Executive Health Program, Diane is able to have her appointments fully coordinated with different specialists. Mayo Clinic has a unique model of care that facilitates efficient diagnosis, treatment and follow-up care all under one roof.

“Our schedules are extremely busy in regards to our career…taking a one-hour flight to visit Jacksonville is the best time we could spend in regards to our health,” says Diane.  Our experience at Mayo Clinic takes health care to another level that all people should experience if possible.”

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Apr 5, 2013 · Suiting up for a celebration

Curtis and three people with his orange shirts on

“My sweet boy,” Deborah Morey said as she practically skipped across the room to join him in a group photograph. The boy is her son, 15-year-old Curtis Morey, who was diagnosed with medulloblastoma (a type of brain tumor) on Jan. 27, 2012. The skipping at his Mayo appointment last week was one of several signs that March 28, 2013, was a happier milestone in Curtis’ medical adventure.

When the Moreys arrived for the appointment, Deborah was wearing a blaze-orange T-shirt with Curtis’ picture on the front and the word “Curtify” printed across the back. Perhaps more surprising, the clinical assistant who greeted them wore a matching T-shirt. Inside, Curtis’ doctor, Amulya Nageswara Rao, M.B.B.S., of the Mayo Clinic Children’s Center, was (you guessed it) also was wearing the same shirt. The emotion in the room was palpable, a mixture of relief and elation. And for good reason — last Thursday marked the beginning of Curtis’ last chemotherapy treatment.

Earlier that week, Deborah Morey had written a heartfelt letter to Dr. Rao. She began by saying, “Mayo simply saved our son’s life.” She went on to thank Dr. Rao for “listening to our concerns, fears and desires, and for your respectful nature, amazing professionalism and unsurpassed medical knowledge demonstrated this whole journey.” And while admitting she wished they’d have never had to meet, “Given the circumstances, there is no one I would have rather had as part of our journey,” Deborah wrote.

Along with the letter, she enclosed a T-shirt and relayed her wish that Dr. Rao wear it to commemorate the joyous occasion of his last chemotherapy session and to surprise Curtis.

As the photo shows, Dr. Rao and her staff were more than happy to oblige. “Being diagnosed with cancer and going through the treatment is like a triple marathon for our young patients and their families,” Dr. Rao says. “It has been an honor and a privilege to be a part of this exceptionally determined young man’s journey. The greatest gifts are cherished moments like these that we share with our patients and families.”

So what is “Curtify,” you ask? “It’s just a nickname my high school friends call me,” explained a beaming Curtis. Another possible interpretation may be captured in the close of Deborah Morey’s letter, where she writes, “We are forever indebted that Curtis was able to have the best care in the world and that he is still here with us and pressing forward one year later.”

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Apr 3, 2013 · Mayo’s caring attitude brings hope to patient

Jim and Louanne, with black walnut veneer logs cut on their farmJim Brooks was vacationing with his family in Spain when suddenly he couldn’t speak for 10 minutes and wound up in the hospital. Jim and his wife Louanne decided together they wanted to return to their Minnesota home and Mayo Clinic.

Jim was diagnosed in August 2012 at Mayo Clinic with glioblastoma, stage 4 brain cancer: he had a ticking time bomb in his head. “Our first appointment was a week after we saw our family physician, and a week after that, I had surgery.  I am thankful for the rapid and coordinated care at Mayo Clinic, and people going the extra step when they didn’t have to,” he said.  Jim received care from not only the surgeon and the doctors, but also many others who were involved with his treatment. “Our sense is that we’ve interacted with somewhere between 100-200 people directly, and indirectly 1,000 people that had a part in my care,” said Jim.

“You don’t know what lies around the next corner or what you’re going to face tomorrow. But when you experience the tremendous caring by everyone at Mayo you know you can handle that adversity,” said Louanne, “At Mayo, you receive not only top quality care, but also top quality caring.”

Jim’s surgery went remarkably well and his treatment continued. “Neurooncologist Dr. Uhm said it’s not a pretty picture but you’ve had the best surgery and it makes my job that much easier.  We are going to do our best to give you a high quality of life for as long as possible,” Jim recounts.  “My recent MRI showed no tumor, and I am doing great.”

There have been several steps along the way for Jim’s treatment and recovery, from surgery to clinical research trials to radiation and chemotherapy. He credits “the great people that I have relationships with throughout the Clinic; we all joke together and laugh.  It’s a major part of my care,” said Jim.

“No one should underestimate the importance of the caring attitude at Mayo Clinic; it takes just one person to shatter that sense of hope,” said Louanne. “Thank you to all those, from the doorman to the doctors and those behind the scenes, who make this atmosphere possible because it is very healing and hopeful.”

Jim and family and friends upon completion of his radiation on bell-ringing dayJim’s family and friends have been a great blessing throughout his journey. Many of them celebrated with him when he rang the bell October 3rd, 2012, marking the end of radiation.  He is back living an active life, working as a consulting forester and doing chores on the farm.

 

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