Upstate Health, winter 2020 by Upstate Medical University

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Strokes can happen to anyone Would you donate a kidney? Why you should care about sleep apnea Patches showcase ďŹ re department personalities Blue light detects bladder cancers

Breakthrough drug for cystic fibrosis lets patients breathe easier

From the experts at

Winter 2020

WHAt’ S up At upStAte

In Case You Missed It page 2

Lessons from Upstate When a red patch on the scalp warrants examination page 14

page 21

Science Is Art Is Science Blue light improves bladder cancer detection back cover

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Diﬀerent Strokes 3 Central New Yorkers share their health crises BY AMBER SMITH

Karen Albright, DO, PhD, appeared on the screen. “Dr. Albright took control,” recalls Mark Sachetti. To him, his wife looked fine. Albright was not convinced.

nyone can have a stroke.

Three people who did, and who were treated recently at Upstate’s Comprehensive Stroke Center, share their experiences, illustrating how strokes differ. The people had different symptoms and different treatments. One is in her 20s. The other two are in their 60s — one with a risk for stroke, and one without. Two are female. Two made use of telemedicine (see page 7) at smaller hospitals in Rome and Watertown; the other lives in Syracuse and came straight to Upstate. All three had “ischemic” strokes, caused by clots that blocked the blood flow to their brains, but the clots developed for different reasons. Two were treated with the clot-busting medication tPA, tissue plasminogen activator. One underwent a surgical procedure to retrieve the clot. All three survived.

A blinding headache Suzanne Sachetti, 65, of Watertown is retired as an information technology director.

Soon after she received the medication, Sachetti was transported by ambulance to Upstate. She stayed in a room in the neurological intensive care unit. “All of those nurses and all of those doctors, they treated her very well, and they knew what they were doing,” Mark Sachetti recalls. He brought his wife home three days later.

Symptoms

Cause

The Sachettis have a lawn tractor. Mark Sachetti remembers that on May 19, his wife came into the garage saying she was going to mow. She went into the house to use the bathroom first. Twenty minutes later, she still had not returned. He went inside to check on her. Suzanne Sachetti told her husband she had developed a blinding headache, become dizzy and started feeling strange — and now she saw two of him.

Both of Sachetti’s vestibular arteries — the major arteries in her neck — were blocked. Some plaque broke off in one of them and traveled through the bloodstream until it blocked an artery in the cerebellum. That is the section of the brain that controls speech and balance. Strokes in this area can be devastating. Mark Sachetti says he realizes connecting with Albright so quickly for treatment made a big difference in his wife’s recovery.

Neurologist Karen Albright, DO, PhD, evaluated Suzanne Sachetti long distance.

“Around that time, there were a lot of stroke commercials on TV,” Mark Sachetti recalls. He recognized the signs of a possible stroke, and he knew what to do. His wife just wanted to rest. He insisted they get to a hospital. She had trouble walking, but he helped her to the car. They drove to nearby Samaritan Medical Center. “I think she could be having a stroke,” he said as they entered the emergency department.

Care 4

After examining Suzanne Sachetti, looking at the scans and talking with the emergency doctor, Albright told the Sachettis she believed Suzanne Sachetti was having an ischemic stroke caused by a clot. She told them about tissue plasminogen activator, or tPA, a clotbusting medication that can be effective if given early in the course of a stroke. It can also cause bleeding. That was a risk the Sachettis were willing to take.

After a computed tomography (CT) scan, Sachetti was put in a room with a telemedicine connection to the Upstate Comprehensive Stroke Center. Neurologist U P STAT E H E A LT H l winter 2020 l upstate.edu

recovery Sachetti has some cognitive and short-term memory issues, her husband says, but physical therapy has helped improve her dizziness and balance.

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nauseated and dizzy at 4 a.m. Debra Born, 25, is a new graduate of Utica College with a public relations degree. She lives north of Rome.

Symptoms Debra Born awakened feeling off about 4 a.m. on Aug. 6. She was nauseous and extremely dizzy. “I thought I was just exhausted and figured that was why I could not move. I kept trying to say that I was fine, but I had a hard time talking.” Her father, Frank Born, says it’s fortunate she couldn’t speak. “She was trying to tell us, ‘I’m OK. Just let me sleep.’ And we might have.” Instead, he dialed 911.

Care An ambulance brought Born to the hospital closest to her home, Rome Memorial Hospital. The physician in the emergency department, via a teleconference with stroke specialists at Upstate, arranged for a helicopter to fly Born to Upstate University Hospital in Syracuse. She had a blood clot in her brain that was swiftly removed by Hesham Masoud, MD, an interventional neurologist with specialization in vascular neurology and endovascular surgical neuroradiology. Eighty percent of strokes are caused by clots, when an artery that feeds the brain becomes blocked. The other main type of stroke happens when a vessel bursts and bleeds. The treatment options are different for each type of stroke, and care is tailored to each patient based on the size and location of the clot or bleed, and the patient’s condition and medical history.

Cause Masoud explains that Born’s stroke developed from an arterial dissection, a small tear in the lining of an artery at the base of her neck. This likely happened when the artery rubbed against her vertebrae, perhaps when she lifted something heavy or twisted in a certain way during physical activity. A clot developed, which caused an ischemic stroke when it obstructed blood flow to the brain.

recovery The clot retrieval is performed in an operating suite, using micro catheters (tubes) and X-ray guidance. Born was feeling back to normal within hours of the procedure. When Masoud came to her bedside, she remembers, “he was thrilled to see how well I was doing.” She was hospitalized overnight and able to go home the next day, with no lingering deficits from her stroke. Born says she appreciates the prayers of loved ones. “The skill of Dr. Masoud and my whole stroke team was impressive, and I am grateful to them for doing their best to ensure that I walked away alive and well.” Continued on page 6

Debra Born, 25, had a stroke in the middle of the night. Her difficulty speaking helped her father realize he needed to call 911. PHOTO BY SUSAN KAHN

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Diﬀerent strokes continued from page 5

‘i can’t use my arm’ Leonard “Larry” Johnson, 67, of Syracuse, is a retired truck driver and construction worker.

Symptoms He wasn’t feeling good the whole week. That Friday, Nov. 8, watching ESPN on television, Johnson hit the bed with his right arm. His fiancée, Karla Rosen, thought he was excited about whatever game he was watching. Then he tapped her. That got her attention. “I can’t use my arm, I can’t use my arm,” he muttered. “I feel funny.” Rosen remembers Johnson’s lips weren’t working right, his words were slurred, and his left side was weakened. She called 911. Because Johnson has congestive heart failure, the couple is used to making trips to the hospital emergency department. “The doctor asked me, ‘How did you know to act so quickly?’ He said that’s what saved his life, why he was able to bounce back so quickly,” Rosen says. “I thought this had something to do with his heart. I didn’t think of stroke until we got to the hospital.”

Care Johnson underwent a computed tomography scan that revealed a clot on the right side of his brain. Neurologist Hesham Masoud, MD, ordered a thrombolytic medication called tissue plasminogen activator, or tPA, which dissolves clots when administered in the early stages of a stroke.

Cause A person with congestive heart failure has an increased risk of stroke. Because the heart does not pump with optimal force when it’s in congestive heart failure, blood may stagnate in one of the chambers of the heart. This can create circumstances for a clot to form, which may eventually travel to the brain and cause a stroke, Masoud explains. In addition, people with heart failure can also have an irregular heart rhythm called atrial fibrillation that increases the risk for stroke.

recovery

Stroke survivor Leonard “Larry” Johnson, 67. PHOTO BY ROBERT MESCAVAGE

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Johnson went home after three days at Upstate University Hospital. Rosen says he’s not 100 percent back to himself, yet. “He’s got to go to physical therapy,” she says. “We were really blessed that he was able to bounce back.” u

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Would you recognize a stroke? Before stroke specialists can intervene to save a person who is having a stroke, someone else — a loved one, co-worker, bystander — has to recognize the signs of a stroke and call 911.

LUNG CANCER TEAM OF EXPERTS

Clues might include a sudden droop on Hesham Masoud, MD one side of the face, sudden weakness or numbness in one arm or one side of the body, sudden trouble speaking or slurred speech, sudden confusion, sudden trouble seeing or walking, or a sudden severe headache with no known cause. Neurologist Hesham Masoud, MD, says the sudden loss of a function that you had — for instance, you could see clearly, and now you can’t — warrants an emergency trip to the hospital. u

Stroke expertise in rural areas Central New Yorkers who live far from Syracuse can tap into the expertise of the stroke specialists at Upstate’s comprehensive stroke center at several regional hospitals that partner with Upstate. In those outlying hospitals, interactive computer videoconferencing via a secure internet network allows for an Upstate neurologist and the patient, family and rural health care provider to hear and see each other in real time. Working together with the emergency physician, the neurologist can complete an assessment and begin treatment. If appropriate, the patient can be transferred to Upstate. u

The Upstate Comprehensive Stroke Center at Upstate University Hospital partners with the following 11 hospitals (locations shown above) to provide stroke care using telemedicine: Canton-Potsdam Hospital, Carthage Area Hospital, Claxton-Hepburn Medical Center, Clifton-Fine Hospital, Gouverneur Hospital, Guthrie Cortland Regional Medical Center, Lewis County General Hospital, River Hospital, Rome Memorial Hospital, Samaritan Medical Center and Upstate Community Hospital.

CARDIOTHORACIC SURGERY TEAM MEMBERS WHO SPECIALIZE IN LUNG CANCER: MARK CRYE, MD JASON WALLEN, MD MICHAEL ARCHER, DO If you’re facing a diagnosis of lung cancer, turn to the experts at the Upstate Cancer Center. Your multidisciplinary team of board-certified physicians meet with you to create your personalized treatment plan. As part of the area’s only academic medical center, Upstate can offer more treatment options, including robotic thoracic surgery, immunotherapy and clinical trials and the largest array of stereotactic body radiation therapies (SBRT) for precise treatment, fewer side effects and a faster recovery.

FOR MORE INFORMATION:

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Firefighters share an extra bond Kidney donor was glad to help his longtime friend BY JIM HOWE

t’s a dramatic story of sickness, friendship, sacrifice

and the wonders of modern medicine.

A retired firefighter with failing kidneys does not want to live on dialysis, so he goes on the waiting list for a kidney transplant from a deceased donor. But he also asks around to see whether a living person might donate a kidney.

The top candidate turns out to be a fellow firefighter — a longtime friend who was the best man at his wedding. Since the transplant, performed in January 2019 at Upstate, the recipient has been recovering step by step, regaining his strength and telling the world how grateful he is to his pal, his wife and the transplant team. His friend is doing fine with one kidney. The two men, and their transplant surgeon, hope their story can inspire others to donate a kidney and help save a life.

the patient Steve Preston, 62, is retired from the Brighton Fire Department, outside Rochester, NY, and lives nearby in Penfield, where he was also a volunteer firefighter. He had survived esophageal and testicular cancer when he found out in 2012 that his kidneys were declining. By 2017 the organs were failing, and he went on a transplant candidate list in January 2018. As he got sicker, his arms and legs swelled, and he was told he would need either dialysis or a kidney transplant. “It’s a disease that is so slow in progression that if you were a real macho guy and blew it off, you’d get to the point of almost being dead before you throw in the towel and go see a doctor,” Preston said. He had seen how difficult a life on dialysis was — the exhaustion, the frequent trips to a treatment center, the many limitations — and was determined to get a transplant instead.

the patient’s wife Carol Preston, his wife of 22 years, is a nurse whose training came in handy as she helped him handle his medications. The couple publicized his search for a donated kidney through TV and radio interviews, social media, their church and fire departments, and potential donors in 8

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the Rochester area underwent screenings to see if they would qualify. The alternative to finding a live donor: Wait his turn for a kidney from a deceased donor. Carol, who later oversaw his recovery at home, recalled, “He didn’t know how sick he was until he started to get better after the kidney transplant. He didn’t realize how much energy he didn’t have.”

the donor Of all the people screened, the donor who was decided on was Dave Warren, who is seven years younger than Preston. They met in the 1980s when a teenage Warren joined the Brighton Fire Department’s Explorer program, then overseen by Preston. Preston became Warren’s mentor and friend, and Warren became a full-time firefighter; he is now is a lieutenant in the Rochester Fire Department. Warren recalls the extensive exams he underwent to qualify, agreeing with a nurse who told him it would be the most thorough physical he’d ever have. Reflecting on his donation, Warren said, “I’m glad I did it. I have no regrets,” and noted that there are three levels of living donors: “One is the person who gives to a family member. The next level is the person that gives to a friend. And then there’s the person that gives to a perfect stranger, and that’s the ultimate donation.”

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“Since the operation, it’s been great. There’s been no change in my physical activity,” said Warren.

the surgeon Preston came to Upstate for his transplant because the wait is shorter than in Rochester and because Upstate’s assertive program will work with candidates and organs that other programs might reject. Preston, as a two-time cancer survivor, would not have been accepted in all transplant programs, said Mark Laftavi, MD, professor of surgery and the interim director of the kidney and pancreas transplant program at Upstate. When a live donor is involved, the operation can be scheduled quickly. The donor and recipient undergo simultaneous operations, and the donor can return fairly quickly to a normal life with just one kidney. The recipient, however, goes through a more gradual process of recovery, at first avoiding strenuous activity and exposure to germs and crowds, while being sure to drink plenty of fluids and take anti-rejection drugs. The drugs are taken for life but are eventually reduced to a maintenance level.

“The beauty of a kidney transplant is the patient goes back to a normal life,” Laftavi said, and the new kidney should last Preston his whole life. Although Preston is from the Rochester area, “because of Upstate’s program, our reputation, he came to us. The waiting list is longer in Rochester. We do robotic surgery here at Upstate, a way to perform this surgery that is new in this country and relatively rare.”

Preston, left, and Warren in 1989. PROVIDED PHOTO

Laftavi further noted, referring to cadaver kidneys, that “our waiting time in Upstate New York is the shortest in the entire state. Fifty percent of our patients get transplants within 18 months. We at Upstate are the most aggressive program in the state. We know how to successfully use organs that are otherwise considered high risk for transplant.”

Upstate’s transplant program has the shortest wait time in New York state. In 2018, Upstate transplanted about 115 organs, mostly kidney and some pancreas.

Also, he said, “for a living donor, there is practically no wait time. We are committed to do a living

Laftavi operated on Preston, while his fellow surgeon Rauf Shahbazov, MD, PhD, operated on Warren.

donor transplant anytime a patient and donor are ready. Bigger programs might take several months or a year for a living donor transplant.”

Continued on page 10

A chaplain who donated a kidney to a refugee page 11

Dave Warren, left, donated one of his kidneys to fellow firefighter and longtime friend Steve Preston, right. PHOTO BY ROBERT MESCAVAGE

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Firefighters

continued from page 9

Mark Laftavi, MD, interim chief of transplant services and director of the pancreas transplant program at Upstate PHOTO BY ROBERT MESCAVAGE

Transplant Q&A 1. Who are the best candidates to donate a kidney? Generally, people in good physical and mental shape, older than 18 and free from a list of conditions and diseases. The younger the donor, the better, but donors can be as old as 60 or 70. The transplant team will help determine eligibility. 2.

What does it cost? There is no cost to the donor for any transplant-related tests or care; it is covered by the recipient’s insurance, and any travel costs can usually be paid through charitable foundations. Also, if the donor should ever need an organ transplant, he or she would immediately be placed at the top of the waiting list. 3. How do you sign up? Contact Upstate transplant services at 315-464-5413 with any questions. u

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Preston, pictured with his wife, Carol, enjoys wearing his “recycled parts” T-shirt to encourage kidney donation. PHOTO BY ROBERT MESCAVAGE

A nurse (one of many) Preston, his wife and Warren all said they were impressed with the Upstate transplant team, which includes people who handled everything from explaining the procedures to checking on their condition, adjusting medications and scheduling appointments. One person Preston singled out for praise was Jayne Vamvakias, one of the nurses who cared for him in Upstate University Hospital both before and after the operation. “Steve was a special patient. We were able to be right there when he needed us and check on him frequently,” Vamvakias said, speaking of her nursing team. “And we do that for all of our patients. We try to go above and beyond.” “My favorite part is being that bridge between them getting Jayne Vamvakias the organ and feeling better. I’m the middleman. My favorite part is watching the teamwork, feeling special because this is a very special time; they’re getting an organ that can save their life,” she said.

A final thought on giving Preston saves his biggest praise for his old pal: “From a recipient’s standpoint, the big thing is that Dave is so generous, not just with his kidney but with having donated 15 gallons of blood over the years. That’s a lot of blood to save a lot of lives.” Preston gives back, too, in a task with a personal meaning for him. He volunteers to deliver stem cells — immature blood cells, such as those found in bone marrow — anywhere they are needed around the country for transplant into patients with certain cancers. He has made more than 100 such transports since retiring from firefighting. u

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Chaplain donates a kidney to a dying refugee BY JIM HOWE

t was a note in a church bulletin

As it turned out, Huizenga was also the only person who stepped up to be tested as a possible kidney donor.

that led an Upstate chaplain to

She underwent a battery of tests and heard about the possible risks of surgery. She also felt comfortable with the surgeon, who had graduated the year after her at Calvin University in Grand Rapids.

donate one of her kidneys to a

Bhutanese refugee. The Rev. Susan Joy Huizenga, the palliative care chaplain at Upstate since August 2018, was living in Michigan at the time. She was working as a chaplain at a VA hospital and attended a church where “I see this bulletin announcement that says a kidney is needed for a refugee, and I said, ‘What!? How audacious is that!?’” She saw the ad again the following week, and by the third week, she started thinking that she might qualify as a donor. She met the basic medical requirements, had given a lot of blood over the years, and “felt this nudge that I ought to do something,” she said.

“He really made me feel a lot better, and he was compassionate. When I went to see him, he said, ‘Thank you for giving the gift of life.’ I had a good feeling about him, and it made a big difference. He explained in great detail about what he would do and why,” Huizenga said.

no regrets “One of the things they later told me was, ‘How rare that you would be a match, out of the one person to get tested, one person was a match.’ If it was meant to be, it was meant to be. I guess I would say it’s not just about Buddi, it’s about all the people in her life who still have her in their life, and the effect is like throwing a pebble into a pond, and the waves, they keep going and they impact on others.”

The ad had been placed for a gravely ill woman named Buddi Subba, whose kidneys began to fail while she was The Rev. Susan Joy Huizenga, right, gave a kidney to Buddi “I don’t regret it for a secSubba, left, in 2016. They both attended the Servant Christian living in a refugee camp in ond. I’m 56 now; I was 52 at Nepal. She was among tens of Reformed Church in Grand Rapids, Michigan. PHOTO BY DAN DAVIS the time. It should last her the thousands of minority ethnic rest of her life.” residents forced out of Bhutan. One of the first things Huizenga did after the transplant operation was to go to Subba’s room and give her a hug. the only donor The United Nations sent Subba on an emergency basis to Grand Rapids, Michigan, where she had a niece, and where she started what would be two years of kidney dialysis treatments. She also became a Christian and started attending the same church where Huizenga was teaching weekly classes in English as a second language. Huizenga had heard about Subba’s enthusiastic church attendance, her desire to learn English and to read the Bible and how her disease had made her look much older than someone in her mid-40s.

“When I went to see her the day after surgery, her color was better, she was smiling, and she said, ‘You have given me life. Thank you. God bless you.’ She was so happy.” Subba’s brother, on Facebook from Nepal, also thanked Huizenga for saving his sister’s life, as did others. The transplant surgery took place in September 2016 in Grand Rapids. Today, Subba and Huizenga are both in good health. u upstate.edu l winter 2020 l upstate health

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A life-changing drug

Brittnee Farmer and her fiance, Brian Cooney, are grateful for the dramatic improvement in her health, thanks to three pills a day. PHOTOS BY ROBERT MESCAVAGE

Patients see improvement of cystic fibrosis symptoms BY AMBER SMITH

rittnee Farmer, 31, is planning her wedding.

She worries that the big day will be marred by

“It’s like I got a new body,” she says. “It’s like I returned a defective one and got a new one.

her nebulizer, the machine she uses to inhale

“It’s very much a life-changing drug for me.”

medication in a fine mist. Farmer was a preschooler when she was diagnosed with cystic fibrosis. Because of the genetic disorder, thick mucus accumulates in her lungs, causing Farmer to cough — and to seek relief from her nebulizer. She really wants to enjoy her wedding day without the machine. She gets teary-eyed now, thinking that may be possible. Farmer is one of the first cystic fibrosis patients at Upstate to start taking a newly approved CF medication for those age 12 and older called Trikafta. Within the first two weeks on the regimen — two pills in the morning and one at night — Farmer no longer feels short of breath when she awakens in the morning. She no longer jumps out of bed to run to her nebulizer. 12

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It’s the first therapy that successfully targets the genetic root of CF rather than just alleviating symptoms. Christopher Fortner, MD, PhD, medical director of the cystic fibrosis program at Upstate, says one of the first things patients notice when taking the new drug is an improvement in how they feel. “Most of them told me they coughed out a lot of mucus the first few days after starting Trikafta, but then their cough went almost completely Continued on page 13

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A life-changing drug

continued from page 12

away,” he says. “For some of them who have coughed almost every day they can remember, this is a huge improvement.” He says during clinical trials of Trikafta, patients completed surveys that gave symptom scores based on mucus production, congestion, cough, wheezing and shortness of breath. This score improved by about 20 points for people who had never taken a modulator before. Symptoms improved, and so did their Farmer with her health care team, from measurable lung function and the amount left: Christopher Fortner, MD, PhD; Ashley Waterman, RN; and Sumendra of chloride in their sweat. Trikafta is not a cure for CF.

Joshi, MBBS

If patients stopped taking the drug, Fortner predicts their mucus would become thick again, their cough would return and their lung function would drop. “But taking Trikafta as directed by their CF doctors will help their CF protein work much better and may minimize both the symptoms of CF and the progression of the disease.” The hope is that Trikafta can help turn CF into a chronic disease, like diabetes. The life expectancy for someone born with CF today is, on average, 44 years. Trikafta could change that. “I think it’s going to improve the life expectancy by a lot,” says Fortner. “It could really have a dramatic improvement not just for how long they’ll live, but for living more days without symptoms and feeling better.” That’s been Farmer’s experience since starting Trikafta in November. Farmer met her fiancé on a Myrtle Beach vacation. Their romance continued long distance until Farmer moved from Charlottesville, Va., to be with Brian Cooney near Utica. Her move meant finding new doctors. “My first appointment at Upstate, I felt more comfortable than I ever had with my team in Virginia, and I had been there my whole life,” she says. She told her doctor, “I feel like I am just getting my diagnosis. There is so much that you are telling me that I did not know.” She was 4 when she was diagnosed, but she remained active, playing with cousins, competing on the swim team, cheerleading. Her mom and dad helped her learn how to live with her condition, but Farmer says, “It was never really like a disability. I didn’t share the fact that I had CF with a lot of people, just because I wanted people to know me.” She coughed a lot. She used a nebulizer first thing every morning, and throughout the day. She took enzymes before meals to help her body absorb nutrition. She heard about a new medication in development that could, potentially, improve the lives of people with CF, but she did not get her hopes up.

About Trikafta To understand how the new CF medication works, you first have to understand the role of the cystic fibrosis transmembrane conductance regulator protein, or CFTR protein. This protein forms a tiny channel, or tube, that allows chloride to flow across the cell membrane, allowing water to move from one side of the cell layer to another. Without this protein, sweat is too salty, mucus in the airways is too thick and sticky, and similar problems occur in the pancreas, intestines and sinuses. About 90% of CF patients have at least one CFTR genetic mutation, which causes problems in the channel formation. The protein doesn’t fold correctly into a tube; the cells reject that misfolded protein and won’t send it up to the top of the cells, where it needs to be in order to let chloride move across the membrane. Two of the ingredients in Trikafta help the protein fold well enough to form a tube. But even if the protein folds into a good enough tube to be sent to the cell surface, the ends of the tube are closed and won’t let chloride through. The third ingredient in Trikafta helps keep the tube open. “With these three ingredients working together, the CF protein works better, but still not as good as a CF protein with no mutations,” explains Christopher Fortner, MD, PhD, the medical director of the cystic fibrosis program at Upstate. Trikafta is not designed to treat people with CF who do not have a CFTR mutation. Fortner notes that a huge research push is underway to find therapies for those patients.

Then when she relocated to Central New York and began receiving care at Upstate, she learned she was a candidate for the drug that has changed her life. Farmer and Cooney plan to be married in October. And Farmer doesn’t expect to need her nebulizer to get through the day. u

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FroM our expertS

LESSONS

FROM UPSTATE

In older patients, early skin biopsy may be warranted BY AMBER SMITH

ngiosarcoma is a cancer that

spreads easily from the cells where it originates, in the lin-

ing of the blood vessels and lymphatic channels. When it appears in the skin, it’s called cutaneous angiosarcoma; it’s rare, but deadly, with a 10-year survival rate as low as 14 percent. “Early detection is essential to the treatment,” a team of Upstate doctors writes with colleagues from The Netherlands in the journal Case Reports in Dermatological Medicine. Cutaneous angiosarcoma often appears on the scalp, the face or neck – and it can be mistaken for other skin problems.When a woman in her 90s noticed itchy red patches on her scalp, she assumed she had been burned from a salon hair dryer. Her doctor thought she had eczema, or a skin infection or an accumulation of blood beneath the skin. The woman tried hydrocortisone, moisturizers and antibiotics, but her symptoms did not improve. Instead, the affected area grew. After four months, the area started to bleed. The woman’s doctor referred her to Upstate University Hospital. A biopsy revealed the cancer. A computerized tomography scan showed that it was spreading.

Sharon Brangman, MD

Kerry Whiting, MD Amit Dhamoon, MD, PhD

“She was not interested in pursuing surgery or chemotherapy but agreed to consider radiation therapy to control the bleeding and be comfortable enough to wear a wig,” write the doctors, including geriatric specialist Sharon Brangman, MD; pathologist Kerry Whiting, MD; and internist Amit Dhamoon, MD, PhD. An earlier diagnosis would have allowed her more options. The woman died at home a few weeks later. Lesson: Older people need regular skin exams. Especially in older patients, “any skin problem that doesn’t resolve should be referred to a dermatologist,” says Brangman, chief of geriatrics at Upstate. u

What does it look like? Angiosarcoma can spread to the skin, often in the scalp, face or neck. Then it is called a cutaneous angiosarcoma and may have these features: • Raised and purplish, like a bruise. • Resembles rosacea, eczema or a burn. • Grows larger over time. • Bleeds when scratched or bumped. • Swelling of surrounding skin.

Background: cells of angiosarcoma U P STAT E H E A LT H l winter 2020 l upstate.edu

FroM our expertS

Why you should care about sleep apnea BY AMBER SMITH

You may have sleep apnea if… •

a bedmate cannot sleep with you because you snore so loudly,

•

a relative can hear you snoring from outside of your bedroom,

•

you awake during the night gasping for breath,

•

you’re obese and sleepy during the day, or

•

you fall asleep inappropriately.

Neurologist Antonio Culebras, MD, director of medical neurology at the Upstate Sleep Center, explains that sleep apnea means you have shallow respirations or stop breathing while asleep, more than five times an hour. He advises speaking with your doctor about a referral for a sleep study. “Very seldom do people die in their sleep as a result of sleep apnea,” Culebras says. “The brain has an alerting system. “When the brain senses that not enough air or oxygen is coming to the brain, it wakes up the patient. We call that arousals. Those are awakenings of 30 seconds or less, so they are not recorded in memory. The patient does not remember them. But if there are hundreds of arousals during the night, you can imagine how the sleep is fragmented and of poor quality — and as a result, the patient is very tired and fatigued the following day.”

5 important questions Wendy Levinson, MD, from the University of Toronto lectured at Upstate about a global initiative to reduce unnecessary medical care. She says up to 30 percent of tests and procedures do not help patients and may even be harmful – in America and in many other countries, too. The Choosing Wisely initiative, launched by the American Board of Internal Medicine, encourages patients to make shared decisions with their physicians or caregivers. Levinson suggests patients discuss these questions with their health care provider whenever a test or treatment is recommended:

1. Do i really need this test or treatment? 2. What are its downsides?

Sleep apnea increases blood pressure and may indicate that the oxygen level in your blood is low, which can be perilous for your heart and your brain. You are at higher risk for atrial fibrillation, a heart rhythm disturbance that increases your chance of a stroke. Low oxygen levels can also cause “microinfarcts” in the brain, which can lead to vascular dementia.

3. Are there simple, safe alternatives?

Doctors believe that treating sleep apnea — usually by wearing a continuous positive airway pressure device when you sleep — can reduce those risks.

5. How much will it cost?

4. What happens if i don’t have this test or treatment?

“We know that treatment can lower blood pressure,” Culebras says. “Patients also notice their level of fatigue during the day improves.” u upstate.edu l winter 2020 l U P STAT E H E A LT H

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Eating better Rural medical students learn about culinary medicine BY CHARLES McCHESNEY

any patients know they need to eat better. They don’t know how.

That’s why “I don’t ask them what they eat. I ask them who cooks,” Joseph F. Wetterhahn, MD, told 14 first-year students in Upstate Medical University’s Rural Medical Education program. They gathered in a demonstration kitchen at Syracuse University’s Falk College to learn about “culinary medicine.” Wetterhahn, a family medicine doctor and Upstate graduate, said focusing on cooking gives patients more control over the food they take in, how it is prepared and how much of their budget it will take. He pointed out that the food he buys comes from the grocery store near his home in Adams. It’s a store with far fewer offerings than Wegmans or Whole Foods. Further, he says when teaching patients about culinary medicine, he skips “chefy” things like making pasta from scratch. Instead, Wetterhahn puts the focus on food rules popularized by author Michael Pollan. “Don’t eat anything your great-grandmother wouldn’t recognize as food.” “Don’t eat anything with more than five ingredients.” “Don’t eat anything with health claims on the label.” Wetterhahn was joined by Upstate University Hospital pediatrician Matthew Picone, MD, a veteran chef. Picone demonstrated to students how to prepare chicken breast in a skillet and use what remained in the pan to create a sauce. Students crowded around the demonstration, reacting as Picone sprinkled or drizzled in ingredients — onions, mustard, garlic and mushrooms — changing the fragrance of the kitchen with each addition. 16

U P STAT E H E A LT H l winter 2020 l upstate.edu

Melia Wakeman, a student from Sidney in Delaware County, said the class helped her understand how important culinary medicine is. Her own family has shifted how it eats, she recounted, turning toward fruits and vegetables and away from processed foods. “You want to eat fresh food, as fresh as you can,” she said. A graduate of Rensselaer Polytechnic Institute with a degree in chemical engineering, Wakeman entered the rural medical program when she found work as a chemical engineer unfulfilling and recognized the shortage of physicians in rural areas –— such as her hometown. “These are my people,” she said. Twice a month in Adams, Wetterhahn and his wife, a physician assistant, host cooking classes called “A Better You” for patients interested in learning how to prepare healthy meals. Wetterhahn is up front with the class, telling them he is not a chef, and the meals do not have to turn out perfectly to be healthier than premade foods. “One of the things I try to stress with people is, if I can do it, you can do it.” u

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Student doctors learn about nutrition

RECIPE

A new elective at Upstate Medical University teaches medical students about how food affects health. Fourth-year medical student Natalie Antosh worked with faculty members — Beth Nelsen, MD, Barbara Feuerstein, MD, and Susan Levinsohn, MD from Upstate, plus Kay Stearns Bruening, PhD, form Syracuse University — to create the course, called “Food As Medicine,” which was first offered in the fall of 2019. She says as she encountered patients during her training, she heard questions about how to lower cholesterol and what to eat to lose weight. “I realized I didn’t have the answers.” So she spoke to classmates and approached the medical school’s curriculum office. The resulting course covers nutrition and its impact on multiple diseases, the role of dietitians, mindful eating, social factors that affect what people eat, and more. One of the classes makes use of the teaching kitchen at SU. Students also spend time in a soup kitchen or food bank. “A lot of patients come to their doctor seeking nutrition information. They are looking for how they can lose weight effectively, how they can manage their high blood pressure, diabetes or high cholesterol with diet modification,” Antosh says. “I think it’s really important for doctors to know this information. Not many medical schools require separate nutrition courses. A growing number of schools are exploring creative ways to integrate nutrition into the curricula, according to Lisa Howley, PhD, a senior director at the American Association of Medical Colleges. u

Ginger Turmeric Butternut Squash Soup ingredients 1 large butternut squash, cooked (see notes)

15 ounces coconut milk

2 tablespoons fresh ginger, peeled and chopped

Black pepper, to taste

1 onion, diced 1 tablespoon coconut oil, or olive oil, or butter

Kosher salt, to taste 1 teaspoon ground turmeric Roasted squash or pumpkin seeds and fresh cilantro for serving (optional)

2 cups chicken stock or broth, or vegetable broth

preparation 1. In large pot, saute the ginger and diced onion in oil over medium heat until softened, about 3 minutes.

nutritional information Each of six servings contains:

2. Add the stock and bring to a boil.

254 calories

3. Add the cooked butternut squash (see notes).

21 grams carbohydrates 3 grams protein

4. Stir in the coconut milk.

20 grams fat

5. Season with salt, pepper and turmeric.

17 grams saturated fat

6. Use an immersion blender to blend to a smooth puree. Alternatively, you can use a standing blender in batches. Taste and adjust seasonings as needed

303 milligrams sodium (not counting any from seasonings added to taste)

7. Serve topped with roasted seeds and/or fresh cilantro, if desired.

4 grams fiber

735 milligrams potassium 6 grams sugar

Notes 1.To cook the butternut squash, place it whole in your slow cooker for three hours on high, or six hours on low. Remove, let cool, deseed and remove flesh from the peel. Or, halve it and roast it in your oven at 425 degrees Fahrenheit for 45 minutes to an hour, then remove the seeds and remove the flesh from the peel. 2.Can be frozen in an airtight container for up to six months. u Serves six. Preparation: 5 minutes; cooking: 15 minutes. SOURCE:BOWLOFDELICIOUS.COM

upstate.edu l winter 2020 l U P STAT E H E A LT H

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On display A patch collection grows in the burn center PHOTOS BY WILLIAM MUELLER

burgeoning collection of

fire department and rescue patches is on display in

Upstate’s Clark Burn Center. Two hundred eighty patches of various shapes and sizes occupy a dozen cases in a hallway where patients and family members like to stretch their legs.

The burn center is a six-bed intensive care unit that serves people from 27 counties as far north as the St. Lawrence River and south into Pennsylvania, and from Rochester to Vermont. Nurse Tamara Roberts, the burn program manager, says a grateful patient started the collection years ago by donating a patch from their home fire department. It grew from there. Today’s patches tend to be larger and more colorful. Plenty feature crosses formed by ladders, axes and fire hoses. Some contain mottos. Here are several with distinguishing features. u

Farthest distance from Syracuse: Operation Iraqi Freedom, Ali Base, Iraq (6,149 miles)

Best horses: Nedrow (Onondaga County)

Best use of primary colors: Grampa’s Raiders from Romulus (Seneca County)

U P STAT E H E A LT H l winter 2020 l upstate.edu

Best fire hydrant: Throop (Cayuga County)

Best commemoration: of the 1998 ice storm in Dexter (Jefferson County)

in our C oMMunity

Best firefighter moniker: Granby Center Golden Knights (Oswego County)

Best numeric font: Woodhull (Steuben County)

Simplest slogan: “We care” from South Schenectady (Schenectady County)

Best historic depiction: New Hartford (Oneida County)

Farthest distance from Syracuse within continental United States: Sugar Land, Texas (1,647 miles)

Best dog: dalmatian from Hannawa Falls (St. Lawrence County)

Best appropriation of song lyrics: “Right into the danger zone,” from Port Crane (Broome County)

Best promise: “There in a heartbeat” from Harrisville (Lewis County)

Best insect: hornet from West Carthage (Jefferson County)

Best modern cartoon: Minions from Syracuse Fire Department Emergency Medical Services (Onondaga County)

Most sobering: in memory of six Worcester (Otsego County) firefighters who died in 1999 upstate.edu l winter 2020 l U P STAT E H E A LT H

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Spotting a volunteer BY EMILY KULKUS

undreds of dedicated and valuable

volunteers at Upstate University Hospital are now a little easier

to spot.

With more than 800 people volunteering annually through Upstate’s Office of Volunteer Programs, volunteer services are critical to helping patients and visitors at Upstate University Hospital’s downtown and community sites. For many years those volunteers have worn navy blue shirts, vests and jackets to distinguish them from other people in the hospital. But navy blue tends to be a common color, said Kristin Bruce, director of volunteer services. “I don’t think people know that we have volunteers because you don’t always see them,” Bruce said. “Now you won’t be able to miss them.” All Upstate volunteers began wearing bright blue polos, T-shirts and vests this fall to make them stand out in Upstate spaces. The volunteer hue — a blue the color of a perfect summer sky — is unique among Upstate colors assigned to departments such as environmental (green), transport (purple) or operating room staff (turquoise or maroon). And the T-shirts say “Volunteer” in large white letters across the back, which should help them stand out even more. “It’s such a bright color you’ll be able to spot a volunteer right away,” Bruce said. “And if you’re lost, that’s a big help.”

Halleluyah “Lou” Adebiyi, left, and Stanley Simon model the new Upstate volunteer uniforms. PHOTO BY SUSAN KAHN

Why volunteer? The volunteer programs office recently surveyed its volunteers about why they choose to volunteer. Here are some favorite responses: l “To help where needed, to continue to be active, to be involved with life, to be part of something.” l

l l

“Because I think if everyone took a second to help someone else, the world would be a better place.” “To gain exposure in the medical field while helping others in need.” “Because I can make a difference in people’s lives.” “To give back to the community that has given to me. Now that I am retired I have time to hopefully make someone else’s day a little brighter.” u

U P STAT E H E A LT H l winter 2020 l upstate.edu

Want to volunteer at upstate? Upstate offers many types of volunteer opportunities in several locations. The goal is always to find the appropriate fit for the applicant and the hospital. Adult volunteers must be 18 or older. A typical schedule is four hours per week. Visit www.upstate.edu/volunteers for more information and to fill out the volunteer application form. You may also call 315-464-5180 with questions or for more information.

in our C oMMunity

Learning to administer a breathing treatment is important — and fun — for these future emergency medical technicians. Standing, from left, are Fowler High School students Bishop Walden, Nye’Kerria Dorsey, Eriya Ndayambaje and Furaha Nyirarugendo. PHOTOS BY CHUCK WAINWRIGHT The “patient” wearing the mask is EMT student Najib Ahmed.

Becoming EMTs Upstate partners with city school district to train students in emergency medical careers BY EMILY KULKUS

mergency medicine instructors

from Upstate Medical University are helping dozens of Syracuse

City School District students obtain emergency medical technician certification before they graduate high school.

The program is part of the Public Service Leadership Academy at Fowler High School, which combines high school with career and technical training in areas such as firefighting and emergency medical services.

Brandi Schaefer, right, prepares students to give injections, which they practice using oranges. Pictured, clockwise from left, are Alex Jones, Mya Aung, Ridwan Sirad and Hussein Musa.

In addition to regular high school courses, freshmen and sophomores take one 45-minute class per day dedicated to their specialty career pathway. That increases to 90 minutes per day during the student’s junior and senior years.

Six students graduated from the program in June. This year, 21 students are enrolled in the EMT program. Upon certification, graduates are eligible for a job serving as an EMT in the community. u

upstate.edu l winter 2020 l U P STAT E H E A LT H

Grateful for a lifetime of extraordinary care

Barbara Barry has been troubled with endocrine issues since her late 30s, but thankfully, she says, she has been cared for by some extraordinary Upstate University Hospital physicians.

Barbara Feuerstein, MD, an endocrinologist and clinical associate professor, has been treating her for the past two decades. “Dr. Feuerstein truly cares about me and my well-being,” Barry explained. “She takes time with me. She doesn’t just takes notes when I talk, she is a good listener and provides suggestions on my diet and exercise. She helps to make me a healthier person overall.” At the Joslin Diabetes Center at Upstate Medical University, doctors treat the whole person, and understand how important it is to personalize their patients’ care. “There is no ‘one size fits all’ in health care,” noted Ruth Weinstock, MD, PhD, medical director for the Joslin Diabetes Center. “It is our job to make a positive diﬀerence for patients who are managing lifelong medical challenges.”

Barbara Feuerstein, MD

Barry added, “Dr. Feuerstein stands out when it comes to caring for patients. I’m living a better life because of the care she provides, and I am grateful beyond words.”

Are you grateful? A gift of gratitude is a meaningful way to express appreciation to special caregivers and help patients during their time of great need. To donate to Friends of Joslin, contact the Upstate Foundation at 315-464-4416 or go to www.upstatefoundation.org/donate

WE’VE DOUBLED OUR HEART TEAM

Foundation

THE CARDIOVASCULAR GROUP OF SYRACUSE HAS JOINED UPSTATE CARDIOLOGY FACULTY. NEW PHYSICIANS FROM TOP LEFT: Dana C. Aiello, MD Larry S. Charlamb, MD Mark J. Charlamb, MD Christopher A. Nardone, MD Matthew S. O’Hern, MD Charles Perla, MD Theresa Waters, DO Andrew M. Weinberg, DO

OUR TWO NEWEST OFFICE LOCATIONS 5112 WEST TAFT ROAD Suite J Liverpool • 315-701-2170 510 TOWNE DRIVE Fayetteville • 315-663-0500 90 PRESIDENTIAL PLAZA Syracuse • 315-464-9335 208 TOWNSHIP BLVD Camillus • 315-488-2372 102 WEST SENECA STREET Manlius • 315-464-9335 138 EAST GENESEE STREET Baldwinsville • 315-720-1305

Upstate is pleased to announce the addition of new physicians and office locations. Our united expertise brings you advanced technology and streamlined care. As part of the Upstate Heart Institute, we provide connections to research and surgical care.

Cardiovascular Group 22

U P STAT E H E A LT H l winter 2020 l upstate.edu

UPSTATE PHYSICIANS FROM LEFT: Timothy D. Ford, MD Luna Bhatta, MD Robert L. Carhart, Jr., MD Debanik Chaudhuri, MD Hani Kozman, MD Sakti Pada Mookherjee, MD Avneet Singh, MD Tama Szombathy, MD Amy Tucker, MD Daniel Villarreal, MD

in our Lei Sure

This is why she became a nurse BY EMILY KULKUS

Several times a year, Upstate University Hospital nurse Susan Thomas packs two big suitcases — one new and one tattered — and heads to the airport. One suitcase is full of her own belongings; the other is from a thrift store, so she won’t mind leaving it behind — and filled with medical supplies, toothbrushes, underwear, socks and shoes. Thomas, a labor and delivery nurse at Upstate Community Hospital, journeys to Guatemala on her own dime several times each year to volunteer at a medical clinic that serves the poor. The clinic is staffed through Health Talents International, a faith-based nonprofit that coordinates nurses, doctors and volunteers to treat patients and perform surgeries for Guatemalans with little access to quality health care. For one week each month the clinic in Monte Llano, about 90 minutes from the southern shore, conducts between 70 and 90 surgeries in three operating rooms, running simultaneously starting at 7:30 a.m. each day. Surgeries include bladder repairs, hernia corrections, gallbladder removals, cleft lip and palate reconstruction, and others. Not only is everyone who works there a volunteer — from the surgeons and anesthesiologists to the nurses and recovery room staff — but everyone has also paid his or her own way. For Thomas that includes a plane ticket that can cost $500 to $1,400, and a $650 volunteer fee that pays for her room, meals and supplies to stock the clinic and operating rooms. Her schedule is about the same each time she volunteers. She usually arrives in Guatemala on a Saturday, and she and the 50-person staff begin setting up the operating rooms. She attends church on Sunday morning. Surgeries begin that afternoon and continue through Thursday evening. The patients have time to stabilize before the medical volunteers fly out Friday or Saturday, she said. The days are long and demanding, Thomas said. She is usually physically exhausted and emotionally spent by the time she flies home. But the need is great in Guatemala, a historically poor country that has endured recent earthquakes and volcano eruptions and struggles with access to quality health care. It’s what keeps her going back, year after year.

Nurse Susan Thomas with a patient in Guatemala. PROVIDED PHOTO

“It really comes back to why do you become a nurse,” she said. “I help people get through a major crisis situation, and it’s so refreshing helping somebody.” Thomas has worked as a women’s health nurse and doula — a support person for pregnancy and childbirth — for 35 years and has worked at Upstate Community Hospital since 2013. Her first trip to South America was with her teenage daughter in 1997 or 1998. She has volunteered in Guatemala about 15 times since then. Her trips are not affiliated with Upstate. u upstate.edu l winter 2020 l U P STAT E H E A LT H

Non Profit Org. US Postage

PAID 750 East Adams Street l Syracuse, NY 13210

Permit No 110 Syracuse, NY

SCIENCE IS ART IS SCIENCE IS ART IS SCIENCE IS

rologists at Upstate now offer Blue Light

Cystoscopy, a technology that significantly improves the detection of bladder cancers.

19.355 0120 39.3Mcanfieldsk

An hour before the procedure, patients receive about 2 ounces of Cysview imaging solution through a catheter. Cancer cells absorb the solution. Urologist Joseph Jacob, MD, describes how he examines the interior of the bladder during the cystoscopy. Then he turns on the blue light. Any subtle cancer cells are suddenly revealed as bright pink targets (inset photos). “It picks up these cancers we weren’t picking up before.” To learn more about Blue Light Cystoscopy and bladder cancer treatment, contact Upstate Urology at 315-464-1500. u PHOTOS: BACKGROUND BY SUSAN KAHN. INSETS COURTESY OF JOSEPH JACOB, MD.