UVA Health System Blog

Stories about the patients, staff and services of UVA

 

Podcast Tuesday: Understanding Muscular Dystrophy [AUDIO]

On October 14, 2014 | At 9:36 am

Filed under : Neurosciences,Podcast Tuesday | By
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Back on Her Feet: This Patient Doesn’t Let Cerebral Palsy Stop Her

On October 13, 2014 | At 9:08 am

When Mary Nay turned 70, she celebrated by walking a mile at her gym. The next year, she turned 71 and walked two and a half miles.

Her commitment to fitness would be impressive no matter what, but Mary has cerebral palsy and walks with two canes. She has muscular issues in her legs, hips and knees that make walking challenging. She also has trouble hearing.

Mary Nay, a Virginia author who has cerebral palsy

Author Mary Nay, who wrote “Hardly Handicapped” about her life with cerebral palsy.

But besides exercise, she fills her days working at Walmart, spending time with her husband, children and grandchildren, and promoting the book she wrote last spring, “Hardly Handicapped: Walking Through Life with Cerebral Palsy.”

“She could come up with a whole list of excuses if she tried,” says Bentley Calhoun, MD, who sees Mary at UVA’s primary care clinic at Forest Lakes and walked the last lap with her on her 71st birthday. “But unlike most, she has managed to turn excuses into motivation.”

A Cerebral Palsy Diagnosis

Mary’s parents first realized something was off when she didn’t sit up or crawl. The family lived in Farmville, and taking Mary to the doctor meant driving to Richmond or a specialist in Maryland. It took many doctors’ visits to get a diagnosis of cerebral palsy, which meant her muscles didn’t communicate well with her brain.

Eventually Mary started walking. Doctors put her legs in braces and assigned her exercises to build the muscles in her legs and discourage her from walking on tiptoe.

Mary mostly stayed at home with her parents and older sister. She wore the braces until age four or five, but even after they came off, she was well aware that she couldn’t run or play hopscotch like the other girls could.

Starting school was scary. “I walked in the door, and I saw all these kids looking at me,” she recalls. “I didn’t like that, and I didn’t know how to deal with it, because I had never been in public that much. So I cried and cried and cried and didn’t want my mom to leave. The teacher let my mom stay one week, but finally I had to let go.”

After that rough week, Mary flourished. She became good friends with a pair of twins, Joan and Martha. She couldn’t play sports, so she kept the score. In high school, she was allowed more time than most students to change classes, due to what she calls her “clumsy walk.”

Mary recalls she felt bad when she noticed her classmates were starting to date and nobody asked her out. “I knew: ‘Forget it Mary, that’s not going to happen.’” But that changed too — she dated one boy in 11th grade and attended senior prom with another.

That same year, her classmates announced they wouldn’t go on their senior class trip to New York City if Mary couldn’t go. The school’s sports coach came along and helped her get around, and she got to go to the top of the Empire State Building.

Finally, at graduation, Mary’s parents wanted to walk across the stage with her. The girl who had clung to her mom on her first day of school was horrified by that idea. “I said, ‘If you don’t let me walk by myself, I’m not graduating.’” So she walked alone.

Declining Mobility

After graduation, Mary attended Woodrow Wilson Rehabilitation Center, which provides vocational training for people with disabilities. She then moved to Charlottesville, 60 miles from her hometown, to look for a job. She ended up at Comdial, a telecommunications company, where she worked in many departments for over 31 years. She also had a part-time job for 23 years at political polling firm Cooper & Secrest, where she eventually became a supervisor.

At Comdial, Mary’s mobility began deteriorating. Early in her career there, she struggled to quickly walk down the long hallways, so she got a mobility scooter to help her. But “my mobility went down fast and big time,” she says. She became overdependent on it, and her leg muscles weakened, until she had trouble walking and keeping her balance.

“Today, I wish that I could not have used the scooter, but the past is in the past,” she says.

Calhoun, Mary’s longtime physician, felt she could do better. In 2011, after almost 30 years of scooter overdependence, he referred her to an exercise rehabilitation program through a nearby gym. She began using exercise machines to strengthen the muscles in her legs, and the gym became her second home. “My whole energy level changed,” she says.

Between Dr. Calhoun’s support and care and the exercise program, things started to turn around for Mary. When she drove, she used to use her hand to lift her leg back and forth between the gas and break pedals. As she exercised, she discovered she could move it without the help of her hand.

And finally, she began walking longer distances again, which led to walking a mile around the gym’s track on her 70th birthday.

Author Mary Nay working at WalMart

Mary sits on a stool when working at her WalMart register.

“As her level of health improved, so did her audience,” Calhoun says. “Mary Nay, who has spent much of her adult life relying on assistance for mobility, was walking. And not just walking, but walking an entire mile around the track. You should have seen it. It was like a little mini circus there at the club. Family members, club members, health care providers and curious onlookers all cheering for Mary as she crossed the finish line.”

Mary, in turn, credits Calhoun with referring her to the program and advocating for her so work and life are easier. After retiring from Comdial and Cooper & Secrest, she got a job at Walmart. Calhoun advocated for her, telling her managers she couldn’t lift much weight and needed a stool to sit on. “I would recommend him to the top of the mountain,” she says. “He is not only my doctor but my friend.”

Writing “Hardly Handicapped”

Mary’s book and reputation at her gym have turned her into a local celebrity. She was featured in The Daily Progress, and she’s had multiple book signings. At one, she had a reunion with her old friend and doctor, Peyton Taylor, MD, who she hadn’t seen in years.

“In June 2014, when The Daily Progress wrote a great story about me, he saw it and called to say he was proud of me,” she says. “Then, to my surprise, he came to my book signing. We had such a great reunion.”

Mary started writing because she hopes to inspire others with disabilities. “I hold no grudges that I am born handicapped,” she says. “I do believe God made me this way for public awareness, so people could see what you have to do to have a life. And you can have a life. I’ve got one. I’m married, I have three daughters, a job, I’ve done it.”

It’s been hard. People have made comments, but you have to decide what you want to do, whether you want to accept it or let it tear you down. And I chose to put a smile on my face and go for the gold.”

Where to find the book: Mary’s book is available at Barnes & Noble in Charlottesville. You can also purchase her book through Tate Publishing.

Filed under : Patient Stories,Primary Care | By
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Joe Thomas Takes Charge of T-cell Lymphoma Diagnosis and Encourages Others

On October 9, 2014 | At 10:42 am

Denial and acceptance: two feelings Joe Thomas felt when he discovered he had a rare form of blood cancer called T-cell lymphoma. The local radio talk show host and program director for WCHV had noticed early warning signs but neglected to take a closer look. “I didn’t want it to be cancer,” he says.

Joe Thomas discovered he had a rare form of blood cancer called T-cell lymphoma while visiting UVA for other symptoms.

Joe encourages others to take control of their health through his podcasts supporting UVA Health System and UVA Cancer Center’s Support Services.

A Charlottesville resident, Thomas visited the UVA emergency room for a blood clot in his right leg impeding his blood flow. At the time, he thought it was unrelated to any serious conditions. It wasn’t until Thomas’ doctors urged him to look into the cause of his condition that he was diagnosed with T-cell lymphoma.

A type of non-Hodgkin lymphoma, T-cell lymphomas are a rare form of lymph node cancer. While most non-Hodgkin lymphomas are of the B-cell variety, the T-cell lymphomas are typically more aggressive than their B-cell counterparts, though some patients have a very mild course. T-cell lymphoma has a wide range of symptoms, including:

  • Unexplained fevers or chills
  • Drenching night sweats
  • Unintended weight loss
  • Enlarged lymph nodes
  • Enlarged spleen or liver
  • Change in blood cell counts
  • Rash

T-Cell Lymphoma: An Unexpected Diagnosis

Thomas may have entered the emergency room looking to treat his blood clot, but he is more than happy UVA took the time to examine his overall health. The UVA team discovered a large mass in his lymph gland and immediately determined treatment options. “From that moment on, everyone has been stellar,” says Thomas.

To diagnose T-cell lymphoma, caregivers may test blood and do a bone marrow biopsy and spleen analysis. Thomas underwent a couple of biopsies, a CT scan and a PET scan for the final diagnosis. From the initial investigation of his condition until the last day of treatment, Thomas spent about seven months under UVA’s care, spearheaded by Craig Portell, MD.

He contributes his successful recovery to Portell’s straightforward and hands-on approach to care. Thomas felt comfortable throughout the process, knowing the decision for every test, procedure and treatment. “It is very comforting to be confident that you were getting the straight information,” he says.

Thomas’ Advice for Other Cancer Patients

His words of wisdom to others: “Diet feeds cancer,” he says. While reviewing the results of his PET scan, Thomas noticed that cancer cells eat refined sugar, enabling them to continue growing. Since then he and his wife, Elaine, have become vegans and carefully monitor the amount of sugar they ingest.

Thomas stresses the importance of a healthy diet while undergoing treatment and says this is the reason he had few side effects while undergoing chemotherapy. Preparing for treatment includes having the right foods to provide your body with the energy it needs. He never felt fatigued, nauseous or uncomfortable enough to miss a day of work.

Thomas urges others to take charge of their health full force. He feels a can-do attitude and a valuable support system contributed to his successful outcome. “It is doable; we can beat these cancers,” says Thomas.

He encourages others in similar situations to seek out UVA Cancer Center’s Support Services division to address their concerns and get the care they need. The division features dietitians, social workers, and chaplains who work between the patients and nurses and oncologists to make the process as helpful as possible.

Caring Beyond Cancer Radio Segments

Thomas is featuring UVA’s cancer support services on his WCHV radio show. Listen to the segments so far:

Read More About Blood Cancer

September was Blood Cancer Awareness Month, and we introduced two other patients:

Filed under : Cancer,Patient Stories | By
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Podcast Tuesday: What’s an EMG Test? [AUDIO]

On October 7, 2014 | At 10:09 am

Filed under : Neurosciences,Podcast Tuesday,Technology | By
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“Be The Match” Stem Cell Transplant Saved Molly Bass’ Life

On October 2, 2014 | At 3:36 pm

If you knew your stem cells could save another person’s life, would you Be The Match? The Be The Match® registry is the world’s largest and most diverse bone marrow donor registry, offering patients potential cures for immune disorders and blood cancers.

Through the Be the March Program, Molly Bass got a stem cell transplant to treat her Hodgkin’s lymphoma and large T-cell lymphoma.

Molly and her non-related donor match, Sam Cato, meeting for the first time after her stem cell transplant

UVA Cancer Center’s Bone Marrow and Stem Cell Transplant Program has been designated as a National Marrow Donor Program and now has access to the Be The Match registry. With this program, UVA patients now have access to more than 22.5 million potential donors and 601,000 cord blood units on U.S. and global registries. Patients in need of transplants will be able to receive treatment in-house without traveling to other hospitals around the country.

Prior to this program, receiving transplants was not nearly as accessible or convenient. Molly Bass, a Charlottesville resident, endured a two-year battle with Hodgkin lymphoma and large T-cell lymphoma that took her all the way to Seattle for a life-saving transplant.

A Journey To Seattle

Bass started working at the University of Virginia in 1994 as the assistant director of the Jefferson Scholars Foundation. In 2001, she began losing weight and experiencing itchy feet, dizziness and severe fatigue. Like most, she attributed it to the stress of a busy job and an active lifestyle.

It wasn’t until she felt a lump on the side of her neck and noticed swollen glands that she went to see a doctor. Results from a CAT scan highlighted tumors covering the bulk of Bass’ chest. The next day, Bass was scheduled for surgery to biopsy one of the enlarged lymph nodes. Awaking from surgery she was informed of the news: She had Hodgkin lymphoma. Taking control of her health and treatment options, Bass sought a second opinion, and to her surprise, she was told she had large T-cell lymphoma.

After three different chemo regimens, extensive radiation and two relapses, additional tests determined Bass was affected by both forms of cancer, a rare occurrence. For the best chance at long-term survival, the doctors recommended tandem stem cell transplants. At UVA, Bass was able to harvest her own stem cells needed for her first transplant. Family members were typed for the second transplant but no matches were found.

Without access to the Be The Match program, UVA didn’t have the capacity to find her a non-related donor match and perform the second necessary transplant. Her best option was to travel to Seattle, spending an initial $2,500 out of pocket to find a match.

Traveling to Seattle took a toll on Bass, as she had to leave her house, job, friends, family and her beloved Bernese Mountain dogs. Luckily Bass and her mother were able to stay with friends for the four-month period, but relocation during a time of stress and uncertainty was no easy feat. Through it all, she always managed to keep a positive outlook on the situation. “The transplant was just one more thing I had to do,” says Bass.

The Life-Saving Match

Bass’ donor match, Sam Cato, never gave much thought to donating his stem cells. He had an understanding that it was something people just did in the off chance that it could save someone’s life. Born on the same day nine years apart, Cato and Bass were meant to be a perfect match.

In 2005, after her recovery, Bass and her father flew to Chicago to thank Cato in person. He greeted Bass with a bouquet of red roses as she stepped off the plane. It was an emotional day for both of them. “How do you thank someone who saved your life?” asks Bass.

Bass is a strong advocate for the Be The Match program. About 70 percent of patients don’t have a match in their family and rely on unrelated donors to save their lives. “The ethnic variety of people is becoming more diverse; matches are not as clear cut anymore,” says Bass. “The more people who are typed, the more people are going to be matched.”

She is amazed at the changes and technological advances that are available today to help improve the survival rate of cancer patients. She believes the Be The Match program will help UVA continue to deliver leading-edge treatment to patients locally and within surrounding areas.

Stem Cell Transplants at UVA

Find out more about treatment at UVA:

Another Blood Cancer Patient’s Story

Last week, we met Jim Bryant, who was told he had 3-5 years to live after his mantle cell lymphoma diagnosis. Watch a video to see how Jim is doing now.

Filed under : Cancer,Patient Stories,Transplant | By
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Vote for Your Favorite Mobile Mammography Design!

On October 1, 2014 | At 9:33 am

October means crisp days and pumpkin spice everything. But it’s also Breast Cancer Awareness Month, a chance to share stories and the latest research, treatment and detection news.

Mobile mammography helps women get mammograms in Virginia.

The current mobile mammography unit, which served 1,400 women last year.

This year, we’re asking for your help. We’re getting a new mobile mammography unit. This van travels around Virginia, bringing mammograms to your workplace or community. The new unit will feature 3D mammograms (tomosynthesis) and breast ultrasound.

But we need help with the design! Voting is open now through October 31, and we’ll share the winner in November. Check out the options and vote for your favorite.

 
 

Podcast Tuesday: Reducing Stroke Risk in Patients With Afib [AUDIO]

On September 30, 2014 | At 9:51 am

Filed under : Heart,Neurosciences | By
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A Terminal Non-Hodgkin Lymphoma Diagnosis [VIDEO]

On September 25, 2014 | At 9:28 am

Luck was not on Jim Bryant’s side.

He was diagnosed with mantle cell lymphoma, a rare blood cancer that accounts for only about five percent of non-Hodgkin lymphomas. Although mantle cell lymphoma is most common in men over 60, and Bryant fell into that category, he was still told he only had three to five years to live.

But five years later, Bryant is still going strong, thanks to the treatments he is receiving at UVA Cancer Center.

September is Blood Cancer Awareness Month. Over the next few weeks, we’ll introduce you to Jim and other patients who have been diagnosed with blood cancers, which include leukemia, lymphoma and multiple myeloma.

Watch Jim’s story:

Filed under : Cancer,Patient Stories | By
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7 Quick Questions: Meet Thoracic Surgeon Benjamin Kozower

On September 24, 2014 | At 10:27 am

Ever wonder what your doctor or health provider does outside the exam room? Our 7 Quick Questions series gives you a personal glimpse into the people of UVA.

Benjamin D. Kozower, MD, MPH, is a thoracic surgeon and associate professor of surgery and public health sciences.KozowerB

What did you want to be when you were little?

A doctor. My father and grandfather were physicians, and I used to make rounds with them when I was in grade school.

What’s your favorite place to travel?

We love to go to the mountains, rent a cabin and hike with our kids.

What’s one thing you always have in your fridge?

Milk. We have a 2- and 5-year-old, and it’s amazing how much milk we go through.

What’s the unhealthiest thing you eat?

I have a weakness for fried oysters.

What’s the most exciting thing/research happening in your field right now?

I am an outcomes and health services researcher, and our field has moved into patient-centered outcomes research. I have a grant from the Patient-Centered Outcomes Research Institute (PCORI), which is funded by the Affordable Care Act, to improve the effectiveness and patient centeredness of routine surveillance following lung cancer surgery. This project will incorporate a patient’s risk of recurrence and chance of survival with their functional status and desire to be followed long term.

Why thoracic and cardiovascular surgery?

My mother had lung cancer when I was in third grade. We are fortunate that it was found early, and she is still doing very well.

Who’s your inspiration/hero?

Dr. Alec Patterson; he trained me at Washington University in St. Louis. He is a master surgeon, wonderful person and tremendous leader. He developed the modern procedure used for lung transplantation.

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Podcast Tuesday: Breast Cancer Surgery Options [AUDIO]

On September 23, 2014 | At 9:03 am