Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Oct 24, 2009 · Mayo Clinic and WomenHeart educate women with heart disease

Last week, 69 women from across the country gathered in Rochester, Minn.,  for the 8th annual Science & Leadership Symposium, a joint effort between Mayo Clinic’s Women’s Heart Clinic and WomenHeart: The National Coalition for Women with Heart Disease.

The women — ages 23 to 76 — spent five days learning about heart disease, receiving support from other women and medical providers, and developing skills to become advocates back in their communities. The goal is to raise awareness of heart disease in women. Heart disease is the No. 1 killer of women in the United States.  Learn more about the symposium.

It’s amazing to watch the women connect and recognize the power they have to help others. In fact, more than 450 women have graduated from the symposium over the past several years and 45 percent of them have been credited with saving someone’s life.

In the video below, symposium leaders share thoughts on the symposium.

Communications Consultant, Traci Klein, at Mayo Clinic in Rochester submitted this post.

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Oct 24, 2009 · Powerful voices: Women's heart disease survivors

Participants at the 8th annual Science & Leadership Symposium — a joint effort by Mayo Clinic’s Women’s Heart Clinic and WomenHeart: The National Coalition for Women with Heart Disease — gained insight into their disease Oct. 10 through 14 in Rochester, Minn. They also met and networked with their new heart sisters from across the country, and made plans to go back into their communities and raise awareness of heart disease in women.

Here are some of their stories:
* A 24-year-old who received a heart transplant at 15
* A 42-year-old who says the symposium “heals your soul”
* Another 42-year-old who wants women to take care of themselves first so they are well enough to take care of others
* A 51-year-old whose heart disease is still somewhat of a mystery
* And a 48-year-old who wants to encourage young women to take care of themselves now.

This post was submitted by Mayo Clinic Rochester communications consultant, Traci Klein.

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Oct 12, 2009 · Michigan man's care highlights Mayo's culture, expertise

Just days after being told he had a tumor inside his heart, Ron Reffitt Jr., of Elk Rapids, Mich., was on a medical airplane headed to Mayo Clinic in Rochester, Minn. Gazing down at Lake Michigan on that beautiful sunny day in January 2009, he wondered: Is this the last time I’ll see this?

His symptoms began on New Year’s Day in 2009 — the day after his 42nd birthday. Reffitt woke with a cramp in his neck. The pain worsened as he walked to the kitchen, where he passed out. He roused and passed out again.

At the local hospital, tests revealed fluid around his heart. Then came the real blow: he had a tumor in the right atrium of his heart. Reffitt, who works in his family’s construction business in Traverse City, Mich., was told he didn’t have long to live.


Ron Reffitt's home in Michigan

His physician suggested that Reffitt’s best chance for treatment would be at a health care center with more experience in treating rare conditions. In fact, his doctor had already contacted Hartzell Schaff, M.D., a Mayo Clinic cardiovascular surgeon. The next day, Reffitt headed to Mayo Clinic.

Within an hour of Reffitt’s arrival, he met Dr. Schaff, who told him that more tests were needed to understand what was happening. If, indeed, there was a tumor in his heart, Reffitt asked Dr. Schaff, how long did he have to live?

“I remember him clasping his hands and saying, ‘If it is what we think, and we cannot help, you only have months,’” says Reffitt.
Reffitt then asked if Mayo could help. “I want you to remember one thing. You are not here because we cannot help you but because we can and are going to help you,” he says Dr. Schaff replied. “We can add years to your life.”
The diagnosis, when confirmed, was unusual. Reffitt had a cardiac angiosarcoma, a malignant tumor that begins in the lining of the vessels. Vuyisile Nkomo, M.D., a Mayo Clinic cardiologist who cared for Reffitt, explains that tumors of the heart are rare and usually benign. A cancerous tumor is even more unusual.

The cancer had not spread. Even so, Dr. Schaff didn’t think he could safely remove the entire tumor; he hoped to remove enough so chemotherapy and radiation would stop the cancer. “We knew it would be a technically complicated surgery,” Dr. Schaff says, who has performed surgery on just four patients with the same cancer in his 29-year career. “But he is young and very vital and wanted to go forward.”

Ron Reffitt Jr and his family in Michigan.

In surgery three days later, Dr. Schaff removed the entire outside wall of the right atrium, including most of the tumor. A piece of bovine pericardium was used to create a new right atrium.

The next morning, Dr. Schaff visited Reffitt in the ICU. “He had a big smile on his face,” says Reffitt. Dr. Schaff and his team had removed 98 to 99 percent of the tumor. He gave Reffitt a hopeful prognosis. “You have a strong heart, and I think you are going to do well,” said Dr. Schaff.

These were wonderful words for the father of three. Reffitt went home to Michigan where he began chemotherapy in March. He returned to Mayo Clinic in May for more chemotherapy as well as radiation treatments, which continued through June.

When he could, Reffitt explored the area by car and bike and got in some fishing. Most of the time, his family was not with him in Rochester, so he had time to reflect. “Life is good,” he says. “In the beginning of all of this, I felt the end may be near. My main concern was my kids.”

On a return visit to Mayo Clinic in July, Reffitt learned that, for now, the cancer was gone. Reffitt and his children, ages 23, 21 and 17, couldn’t be more pleased.

Throughout his experience, Reffitt marveled at the level of care he received. “It’s a team effort at Mayo. The heart team did as much as they could and then some, and then the cancer team took over and did the same,” he says. “You can have the best care in the world but you also need positive reinforcement from your caregivers.”

At Mayo Clinic, he received both, a factor he believes aided his recovery. “I was very lucky, very fortunate that things have gone as well as they have for me,” he says.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
When Consumer Checkbook, a nonprofit research organization, surveyed doctors this year about the best place to send patients whose cases were “difficult,” Mayo Clinic ranked No. 1 in the “mysterious illness” category.

“Patients like Ron Reffitt Jr., with a very rare malignant heart tumor, fit this description,” says Vuyisilie Nkomo, M.D., a Mayo Clinic cardiologist and Reffitt’s physician. Dr. Nkomo says that Mayo Clinic’s expertise with unexplained or difficult-to-diagnose health concerns is based on three factors:

Number of patients seen: Mayo Clinic treats more than 526,000 patients every year. Because of that high volume, providers treat a number of patients who have rare and unusual conditions.

Breadth of expertise: Mayo Clinic staff includes 3,646 physicians and scientists — representing nearly every medical specialty.

Teamwork: It’s the Mayo Clinic hallmark. “As colleagues, we often put our heads together to discuss a patient’s situation. That teamwork helps us reach a conclusion on the tests a patient needs and ultimately a diagnosis, and then a treatment plan,” says Dr. Nkomo.

This story was submitted by Traci Klein, a communications consultant in Public Affairs at Mayo Clinic in Rochester.

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May 9, 2009 · A Prom Promise Kept

Dr. Michael Ackerman and Stefani

Dr. Michael Ackerman and Stefani

As an 8-year-old girl from Michigan was headed into surgery for a heart transplant, she asked Mike Ackerman — a pediatric cardiology fellow at Mayo who was part of her care team — if she was going to live. Dr. Ackerman said, “Of course you’re going to live, and I’m going to dance with you at your prom.”  Ten years later — on April 25, 2009 — Dr. Ackerman flew to Michigan to surprise Stefani Pentiuk at her senior prom to fulfill a promise made years ago.

I work at Mayo Clinic in our Public Affairs Department. Specifically, I work on our media team, helping reporters connect with physicians for interviews. I have had the pleasure of helping share Stefani’s story.Update June 5, 2005: Dr. Ackerman, Stefani and her parents were featured live in the studio with Harry Smith on the CBS Early Show this morning. See the segment.

I’ve known Dr. Ackerman for about three years, working with him on news releases for his research published in scientific journals and on patient stories with the media. What has struck me about Dr. Ackerman is how beautifully he connects with his patients and their family members. His interest in helping them and getting to know them is incredibly genuine — and his memory of his patients, their specific circumstances and personal stories is amazing. So when he told me about Stefani and that he was traveling to Michigan to surprise her at her prom, I was not surprised.

On the Monday after prom, I talked to Stefani by phone. She told me that when she turned around and saw Dr. Ackerman at her prom, she immediately recognized him. “I would know him anywhere,” she said. And then she cried — which Stefani doesn’t do often. “I was so filled with emotion.”  After sharing a hug, Stefani’s principal announced that a song would be played for Stefani and her friend. Rascal Flatts’ “Bless the Broken Road” began playing.  Not long after the dance, Stefani’s dad, Perry, drove Mike five hours to Detroit to catch a plane to Florida, where he was speaking the next day. The group he was speaking to even rescheduled the time of Dr. Ackerman’s talk, enabling him to be at the prom the night before. Everyone but Stefani seemed to be in on this surprise — and helping to make it work.  But there’s more. Even before Dr. Ackerman entered little Stefani’s life, Mayo cardiologist Martha Grogan did. She has vacationed in Stefani’s town since she was a young girl herself. In 1999, friends told Dr. Grogan about this young girl who was diagnosed with dilated cardiomyopathy and may need a heart transplant. The friend encouraged her to call the Pentiuks. So on a day when Stefani’s mom, Heidi, was very worried about Stefani’s health, the phone rang, Dr. Grogan on the other line offering her help as a cardiologist. Eventually, she helped the Pentiuks, including older sister Anna, bring Stefani to Mayo. “I don’t feel like I was doing anything special,” Dr. Grogan said. “I just wanted to see if I could help.”  Both Dr. Ackerman and Dr. Grogan say they didn’t do anything special. Many beg to disagree. But part of the reason they say that, I think, is because of who they are personally but also because many people at Mayo — whether physicians, nurses or staff members at the front desk — go above and beyond. It’s part of the culture. This prom promise story is obviously a one-in-a-million story, but it’s also a reflection of what we are empowered to do here in our daily work at Mayo — to make a difference in a person’s life.  And it’s a keen reminder to all of us that there is power in words when a person is ill and needs to hear a caring, genuine and hopeful message.  To see more about Stefani’s story, see these features on WCCO-TV and KTTC-TV .  If you would like to share this story with friends, use the sharing toolbar below to post to Facebook or other sites, or simply copy and paste this URL into an email: http://bit.ly/Pwvpjn

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