Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Jul 3, 2012 · Military Man Celebrates Independence...from Stroke

Sean Bretz and Dr. Rahib TawkAt 23, Sean Bretz was the picture of health. As a member of the U.S. Coast Guard Sector Jacksonville, you’d expect nothing less. But then last June 5, the machinery technician woke up with what he described as “an excruciating headache.” Attributing it to a  late night out with friends, Bretz didn’t think much of it and headed to the kitchen, hoping food might help. Instead he collapsed.

[More photos at Flickr.com/MayoClinic]

Friends thought he’d had a seizure. They called 911 and Bretz was transported to Mayo Clinic where doctors determined a giant aneurysm had burst in his brain, causing a massive stroke. Prognosis was grim.

“I was in shock to say the least,” recalls his mom Noel, when hearing her young son had a stroke. “The staff were excellent though and very informative despite the fact that there was an unknown outcome.”

Despite surgery to stop the bleeding, Bretz had significant brain swelling and was kept in a medically-induced coma. Surgeons had to remove a portion of his skull in attempt to relieve the swelling. When he awoke he’d lost his ability to walk, talk, and even swallow. At one point Bretz could only move his left thumb.

Doctors found that the aneurysm in his brain was still growing so additional surgery was needed. Surgeons implanted a new FDA-approved stent in his brain to help divert the flow of blood and force the aneurysm to dissolve. But recovery was an uphill battle. Daily, there were issues and set-backs – which Noel described as “a minute by minute emotional roller coaster.

Family, friends and colleagues rallied around him. USCG Sector Jacksonville commanding officer Captain Andy Blomme encouraged his troops to visit Bretz and show support for their fellow “Coastie.” Bretz never failed to have a steady stream of visitors.

Sean Bretz and his Mayo Clinic stroke team

And slowly, he improved. “Sean is stubborn,” says Noel. Within two months, Bretz was making remarkable progress – he was able to salute Capt. Blomme with his left hand. And by the fall, he was able to walk – albeit slowly and a few steps. He continued his arduous recovery and rehabilitation near Savannah, Ga., with the help of his mother and ongoing military support.

Almost a year to the day of his stroke, Bretz returned to Jacksonville to attend the change of command ceremony at U.S. Naval Station Mayport. He walked into the crowd, unaided, in full uniform– something that did not go unnoticed.

In his farewell address to the troops, Capt. Blomme paid homage to Bretz, recognizing him for his attitude and as a true example of fighting spirit. “He worked and strained and persevered, had fire, determination and drive…”

Gift to Dr. Rabih Tawk

Capt. Blomme recalled visiting Sean and says “one of the happiest moments was to see a thumbs up sign from someone we were so close to losing.”

Today, Bretz continues with therapy but has made a “fascinating recovery,” says internventional neurosurgeon Rabih Tawk, M.D., a member of Mayo Clinic’s stroke team. “He’s done remarkably well considering where he was. Sean’s is a story that is about good luck and using every treatment and technology available in 2012, which worked for him,” Dr. Tawk says.

Though he still has some deficits and will need additional surgery, Bretz celebrates his independence daily. “For the most part, I am able to do everything for myself with the exception of run and drive.” He hopes to soon be back behind the wheel of his pickup and eventually back at work, the latter of which sometimes surprises him.

Enlisting voluntarily at 20, Bretz says he figured he’d do his four years and go back to school.  “Then everything started coming into place for me,” he says. And now, after his health scare, he’s even more dedicated. “I got to see a different side of the Coast Guard. It’s changed my mind and made me want to stay in.”

And in the eyes of his fellow guardsmen, Bretz certainly lives up to the last line of the Coast Guard creed:  “With God’s help, I shall endeavor to be one of His noblest Works…”

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Sep 2, 2011 · Mayo Clinic Patient, Neurologist Featured on MDA Telethon

Every Labor Day weekend, it’s the same: The Muscular Dystrophy Association (MDA) hosts its annual telethon to raise awareness of and funds for neuromuscular disease. This year, the multi-hour television broadcast, which airs Sunday, Sept. 4 on CW17, includes celebrities such as Celine Dion, Jennifer Lopez, Lady Antebellum, Richie Sambora and Jordan Sparks, who will perform, answer phones and receive gigantic, novelty-sized checks.

In the middle of it all, we’ll hear Aaron Bates, a 31 year old attorney from Orlando. Why is this important? Because Bates is a Mayo Clinic patient and one of only a handful of MDA patients selected to appear on the telethon.

Born with a form of muscular dystrophy called spinal muscular atrophy, Aaron first came to Mayo Clinic in 2000 where he was seen by neurologist Kathleen Kennelly, M.D. “I couldn’t choose a better place to be treated,” he says of “the top tier facility,” which is recognized as one of a few Muscular Dystrophy Association clinics in the state.

Thanks to the efforts of Dr. Kennelly and the rest of the Mayo staff, Bates has been able to live an active life, unlike many affected by muscular disorders. Among his accomplishments, being an advocate for those with disabilities, including serving on the MDA’s national task force for public awareness.
Closer to home, Bates, whose younger sister is affected by SMA, has also been instrumental in legislation vital to the rights of disabled people in the state of Florida.

Obtaining his law degree in less time than some take to complete their undergraduate education, Aaron became one of the youngest graduates ever from Florida State University’s School of Law. Job offers rolled in. Except before the ink had dried on his diploma, Aaron lost government funding for his personal care attendant, an individual employed to assist him with many of his essential daily tasks. At the time, state law mandated that funding for the attendant cease upon completion of law school.

“The system in place was ludicrous. I had multiple job offers but was unable to accept them because I could no longer afford an attendant,” Bates recalls.

Aaron didn’t have a job, but he did get to work. Aaron fought for his own livelihood as well as for the rights of the disabled in his home state. Finally, after an exhausting three year battle, The Florida Personal Care Attendant Program was born. The law awards funding for the employment of a personal care attendant to those disabled individuals who’ve achieved and maintained employment in the state of Florida. With the new legislation in place, Aaron hung out his shingle in Orlando with a friend. The law firm of Bates Mokwa PLLC handles general litigation and specializes in commercial and personal injury cases.

“He’s truly an amazing young man,” says Dr. Kennelly of his advocacy work. She is proud to have him as a patient and believes his efforts have – and will continue to – help a lot of other people.

Bates continues to step up to the plate and his passion is part of what garnered the attention of the national MDA. In late September, Bates will travel to Washington, DC to represent the organization at a national summit, which he hopes will help stimulate change on a grander scale, just as it did in Florida.

In the meantime, tune in on Sunday, Sept. 4, somewhere between Lady Antebellum and Darius Rucker performances, and listen firsthand to this Mayo Clinic patient will tell his story, hoping to spur change. Certainly, many viewers will change the channel. But Aaron’s hope is that some will listen. And some will even send checks. And when it’s over, Aaron Bates will continue to work and advocate. It’s what he’s always done.

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Aug 26, 2011 · Tasty Tips For a Hurricane or Other Disaster

I woke up to a sound I had been dreading – rain. And lots of it, hitting the window of my bedroom. With the steady downpour of water and swaying trees, it was clear that Hurricane Irene had officially arrived in Jacksonville, Fla. What a day to start my internship at Mayo Clinic!

I hurried my customary morning routine as I knew I had to leave earlier than planned to compensate for potentially hazardous driving conditions. And although I arrived on time – albeit a little wet – little did I expect that my first task as an intern in the Public Affairs Department would be appropriately related to the hurricane and disaster preparedness.

Within the first hour on the job I found myself side stepping massive boxes of cooking oil, cereal, tomato sauce and more, as we visited the pantry at Mayo Clinic to talk to Ron Stone, the assistant director of nutrition, who shared tips about how to make nutritious and tasteful meals out of canned goods. He also shared recipes created by Mayo’s dietetic interns that had my mouth watering. Who would have thought you could create quesadillas or chocolate peanut butter pie without electricity?

Despite being from Pennsylvania, where I’ve lived through more than one natural disaster, I was almost looking forward to our next power outage. Some tips I learned are below.

First, while it may seem obvious, it is important to eat the food from your fridge first, the freezer next, and after that move on to foods you may have stocked in your pantry. Do not discard frozen and refrigerated foods right when the power goes out. I was surprised to learn that foods from a well-stocked freezer will last up to 48 hours!

Second, make sure you have a manual can opener. Although it seems obvious, it is easy to forget that your electric can opener will not work.

Finally, stock up on some tasty condiments and seasonings. Certain condiments like mustard, ketchup and relish are good for days with no refrigeration. And these will help you spice up the usually bland pre-packaged foods.

Oh and one last note – grab some powdered milk. Even if you’ve forgotten the hand cranked can opener, you can always just add water and have the breakfast of champions anytime of day.

By Autumn Roth, intern

Jul 11, 2010 · Waiting... for a second chance at life

This post was written by Trevor Bougill, an intern at Mayo Clinic’s campus in Florida.

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Over the past few weeks, the media has been full of reports about renowned musician Gregg Allman of the Southern Rock group, The Allman Brothers Band, who received a life-saving liver transplant at Mayo Clinic. While I’m not a musician – or for that fact, musically inclined in any capacity – I now share something in common with the rock and roll legend: A second chance at life thanks to an organ donation.

It was March 21, 2009 that I learned I had bile duct cancer, or cholangiocarcinoma, a disease that would ultimately necessitate my being placed on the waiting list for a new liver.

As I read about Allman’s surgery, I thought back to my experiences at Mayo Clinic and the uncertainty surrounding organ transplantation. I know first-hand how excruciatingly difficult it is to give up control and just wait and hope for the call to come that an organ is available. It becomes all you think about.

I was placed on the waiting list in June 2009 and every week – week after week – I tried to ignore the emotional angst and remind myself of the solemn assurance that it would happen when it was supposed to.

It was a Tuesday. December first to be specific, early in the afternoon when the phone rang. It was a dreary day, characteristic of the past nine months I had spent cooped up at the Inn at Mayo, waiting. Torrents of despair washed over my mind. I answered the phone with a reticent, frustrated tone.

“Trevor?” Her voice was measured and fastidious. “We think we have a liver for you…”

How hearing those eight words can change your life. The doubt, uncertainty, and despair eradicated. My life was no longer put on hold anymore. My world that I had shutoff from reality reopened.

I had already packed my bag of necessities in advance: New toothbrush, pajamas, blood pressure cuff, a couple books. I was ready to go.

My mother and I arrived at the ER at 4:30 pm. A tech strapped a medical bracelet imprinted with “liver transplant” on my wrist. We were directed to the third floor of Mayo’s hospital, the transplant unit. The nurses escorted us to room 319, my temporary residence for the next week.

I remember looking in the mirror of the bathroom and seeing the whites of my eyes. There was no yellow tint, no evidence of the jaundice that had plagued me for months earlier. Upon first glance, you could not tell I was sick. Although my cheekbones were a little pronounced, I had tried to maintain a healthy weight. I was fortunate enough to still have a full head of hair – the chemo I’d undergone had not ridden me of that.

I lay on the bed in a slightly upright position. A nurse entered the room and gave us a “soft time” of 11 p.m, an estimate of when the surgery would take place. Seven hours, I thought. But then, at that point, what was another seven hours?

The day wore on and finally, she came back. Midnight. It was definite. The surgery was going to happen.

While waiting for the surgery, I was accompanied by Joey and Maggie Shook. Maggie had received a liver transplant two months earlier and Joey was her consummate caregiver. Another liver transplant recipient, Andy Marks joined us. Throughout the arduous wait, Andy had proven to be a constant source of inspiration. He had suffered from the same cancer I had. Both Maggie and Andy were proof that life would continue after this ordeal.

At 10 pm, a short, dark-haired man with thin spectacles appeared. He was dressed in a long white coat that was almost too big for him. I recognized him immediately; it was Dr. Justin Nguyen, the transplant surgeon who would be performing my surgery. His voice was soft and deliberate; slow. He chose his words carefully. He talked about the procedure and asked us if we had any questions. The sagacious man reassured us that everything was going to be fine.

I heard a helicopter hovering above. It was the same noise that I had heard above my hotel room at night for the past eight months. An organ was arriving. Someone’s life was about the change.

I thought I had prepared myself as best as I could for the moment. Anxiety filled my insides. The kind of anxiety one experiences before a big test, except a million times amplified. Life and death anxiety.

The moment had come. Eight months of waiting had culminated to this moment. As I got into a wheelchair, ready to be wheeled to surgery, it hit. I had always tried to distance myself from what the surgery would be like. I tried to remain stoic. But I broke down. Tears of joy (and fear) filled my face. My conscious shuttered. Andy, who had continued to wait with me, placed a hand of reassurance on my shoulder. My mom, by my side, gripped my hand. I gave it a strong squeeze. It was time.

People were everywhere in the operating room. Nurses, anesthesiologists, assistants, doctors. Enough to start a baseball team. I remember the cold. I was shivering. A nurse placed a blanket over my legs while a clear plastic mask covered my nose and mouth. The anesthesiologist told me to relax, to let sleep come. My mind was blank. The wait was over. I was here, on the table, ready.

I spent eleven days in the hospital recovering from the procedure. I dealt with some complications, a stent had to be inserted in my celiac artery due to insufficient blood flow. There is not much I remember about my stay.

When someone has a transplant, they experience a re-birth. Gregg is a week old and I am close to seven months. We are here because of our donors and their families. They saved our lives. How lucky we are. We are forever grateful for their selfless gift.

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Jul 9, 2010 · Modifying your stroke risk

This post was written by Kristin Davies, a registered nurse at Mayo Clinic’s Florida campus.

As a nurse who works with stroke patients and their families at Mayo Clinic’s campus in Florida, I am amazed by the control we can have over our bodies, despite their complexity. A stroke, in any form, can be a scary, debilitating prospect. However, basic awareness can offer a layer of protection that that many people are not aware of. While not all strokes can be prevented, maintaining a healthy diet, exercising, limiting alcohol use, smoking cessation, and managing your stress level are all self-directed ways of protecting yourself from a stroke. Also, being aware of how your body feels and acts lets you know when something is not normal.

Whenever I have a patient who says they called 911 as soon as they realized something wasn’t right with their body, I just want to give that patient a prize – and a hug! Even if the patient didn’t know he/she was having a stroke, having the instinct to call 911 instead of saying “It will pass,” probably made the difference between a full recovery and a life-long debilitating condition.

I always tell my patients that they are the front line to their own medical care; if they aren’t aware of their body, then even the best doctor in the world can’t help fix their health problems.

Jul 6, 2010 · Why I support cancer clinical research

This entry is written  by Brittney Head, 21, an intern at Mayo Clinic’s campus in Florida.

As a young woman in my early 20s, I have been consumed for the past few years with living in the moment and enjoying life to the fullest, without much thought to the future. But as a recent college graduate and a newly-married Air Force wife, I started thinking about the next chapter in my life (i.e., kids) – and with that came looking into my family health history.

My grandmother has hypothyroidism; my father has high blood pressure and I had an uncle with diabetes. (He passed away due to complications from the disease.) I know that these issues can be controlled and maintained with lifestyle changes or are treatable with the proper medications, but I knew it was important to stay on top of the risk factors.

In reviewing my family tree, I hadn’t thought about cancer until I heard an interview with George Kim, M.D., a medical oncologist at Mayo Clinic. As an intern in the Public Affairs Department at Mayo Clinic’s Florida campus, I sat in on the interview Dr. Kim gave. I listened as he talked about the numbers of people who die every year from cancer. And I was amazed when he spoke about the more than 200 clinical research trials currently available at Mayo Clinic for cancer patients. These studies address new and innovative treatments and therapies, giving people with cancer hope and a chance to contribute to the fight against cancer.  His video is below.

http://www.youtube.com/watch?v=7qYM8QSmAzo

As I listened to Dr. Kim speak, I thought about Jim – a man though not biologically related, who is like a grandfather to me. Jim was diagnosed with colon cancer in 2008. Thankfully, his cancer was surgically treated and has not returned; but others are not as lucky.

While many people may be skeptical of clinical studies, it is through these high quality patient-oriented research trials that Mayo Clinic may one day find the cure for cancer. Research offers patients hope – hope for today and for future generations. As I look to the next chapter in my life, I know that although cancer doesn’t run in my family, I may not be immune from it. But I’m glad to know there are doctors like Dr. Kim, working on research, trying to help win the fight against cancer.

For more information about the clinical trials available at Mayo Clinic, please visit the Web.

Dec 17, 2009 · Happy Holidays, Happy Heart

Ah, the holidays a time when most people have added chaos in their lives. Between stressing over finances and the best gifts to buy, fighting traffic at the mall and packing the calendar with parties, it can be the complete opposite of comfort and joy. As a result, the holidays can take a toll on health problems, especially heart disease.

As an intern with Public Affairs, I recently helped organize an interview between one of Mayo Clinic’s Emergency Medicine physicians, Gretchen Lipke, M.D., and a local radio station. Dr. Lipke was sharing information about the rise in holiday-time heart attacks and stroke.

This is a time of year when people tend to stray from daily routines. They delay exercise and go off their diets. Those with health problems may shy away from seeing a doctor because they don’t want to disrupt the festivities. But sometimes, the problems can’t be ignored.

Dr. Lipke mentioned several studies that report more people suffer from heart attacks and strokes during the holidays than any other time throughout the year. The biggest spikes are seen on Christmas Day and New Year’s Day.

With all of the holiday parties and family gatherings, people tend to have more alcoholic beverages than normal. This can lead to “Holiday Heart”  a condition that may result in atrial fibrillation, an abnormal heart rhythm that can be spurred by binge drinking. Dr. Lipke told about a patient who was brought to Mayo Clinic’s Emergency Department with chest pain after drinking three glasses of wine at an office party.

After hearing Dr. Lipke speak of these issues, I began to think that I could unknowingly become a victim of holiday heart. Perhaps some lifestyle changes were necessary.

I have a family history of cardiovascular disease. My maternal grandfather died at age 47 from a heart attack. And I was diagnosed with a heart murmur a few years ago. Although I try to watch my diet and exercise regularly, I still indulge in a glass of wine (or two or three) on occasion. I admit to taking it easy with the dieting and exercising during the holidays, too.

After listening to Dr. Lipke, I know I need to remain conscious of my diet and cut back on the alcohol. I like Dr. Lipke, but I don’t want to ring in the New Year with her at the hospital.

For more on heart attack signs and symptoms of stroke, visit http://www.mayoclinic.org.

As Dr. Lipke advises, don’t hesitate to call 911 or get medical attention if you have chest pain, arm pain or trouble swallowing or seeing. It’s worth your life to interrupt the party.

The following was written by Cody DeSaulniers, an intern in the Public Affairs Department at Mayo Clinic’s Florida campus.

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Mar 3, 2009 · Olympic Runner Part of Mayo's Marathon History

Joan Benoit Samuelson was one of the 6,000 people who came to Jacksonville, Fla., on Feb. 15 to help find a cure for breast cancer. Samuelson, who won a gold medal at the Los Angeles Summer Olympics in 1984, the year that the women’s marathon was introduced, joined racers from every state and 15 countries – including Brazil, Puerto Rico and Kenya – to run in the second annual 26.2 with Donna – The National Marathon to Fight Breast Cancer.

Created by Donna Deegan, a three-time breast cancer survivor, local news anchor and Mayo Clinic patient, the event is the only national marathon dedicated exclusively to raising funds for breast cancer research and care. Seventy percent of the money is given to Mayo Clinic for research and the rest goes to The Donna Foundation, Deegan’s organization that helps women battling the disease. Last year, more than $800,000 was raised.

Samuelson, 51, began the race alongside Deegan and Edith Perez, M.D., oncologist and director of the Breast Center at Mayo Clinic’s Florida campus. She placed second in the half-marathon, crossing the finish line in 1:23:21.  “What a great event,” Samuelson says. “It’s very special and an inspiration to be with all of the other cancer survivors who are out there.”

More than 200 Mayo Clinic employees from all three of campuses participated in the marathon as well. Among them were Laurie Simon, Oluyinka Ajirotutu, Cayla Johnson and Michelle Mungo – all from the Florida campus. The women, who all trained together, say they were inspired by family members and friends who battled the disease but also by the thousands of other women who may benefit from the funds raised by the event.

Next year’s event is already scheduled for Feb. 21, 2010. Details are available on the marathon’s Web site.

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