DiversityNursing Blog

Frequent Tanner Shares Grisly Skin-Cancer Selfie

Posted by Erica Bettencourt

Fri, May 15, 2015 @ 11:46 AM

By AnneClaire Stapleton

www.cnn.com 

Tawny Willoughby grew up in small-town Kentucky, where, she said, it was normal to use a tanning bed four or five times a week. 

"I had my own personal tanning bed in my home, and so did a lot of my friends growing up. ... Everyone tanned," Willoughby said. "I didn't really even think about the future or skin cancer at the time." 

150512155326 09 tawny willoughby exlarge 169 resized 600After one of her classmates in nursing school was diagnosed with melanoma, Willoughby made her first dermatology appointment at age 21. Sure enough, she had skin cancer.

Now 27, Willoughby says she has had basal cell carcinoma five times and squamous cell carcinoma once. She goes to the dermatologist every six to 12 months and usually has a cancerous piece of skin removed at each checkup.

She's become a cautionary tale about the hazards of tanning beds, thanks to a selfie she posted last month on Facebook. The grisly image, taken after one of her cancer treatments, shows her face covered with bloody scabs and blisters. It's since been shared almost 50,000 times.

"If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment can look like," she wrote in a post along with the photo. "Wear sunscreen and get a spray tan. You only get one skin and you should take care of it."

150512132628 01 tawny willoughby exlarge 169 resized 600

One in five Americans will develop skin cancer in their lifetime, according to the American Academy of Dermatology. Exposure to tanning beds increases the risk of melanoma, the deadliest form of skin cancer, said the academy, which reports that more than 419,000 cases of skin cancer in the U.S. each year are linked to indoor tanning.

Melanoma is the most common form of cancer for adults 25-29 years old and the second-most common form of cancer for adolescents and young adults 15-29 years old, according to the academy. Warning signs include changes in size, shape or color of a mole or other lesion, the appearance of a new growth on the skin or a sore that doesn't heal. 

Risk factors for all types of skin cancer include skin that burns easily, blond or red hair and a history of excessive sun exposure, including sunburns and tanning-bed use -- dangers that the blonde, blue-eyed Willoughby now knows all too well. 

Willoughby, a registered nurse who now lives in northern Alabama, said she never expected the Facebook picture of her damaged face to go viral. 

But she's excited to think her story might save someone's life.

"I've lost count of how many people shared it now and told me I've helped them," she said. "It's really cool to hear people say they won't tan anymore. I've had mothers thank me after sharing my pictures with their daughters. People in my hometown said they are selling their tanning beds.

"I never thought about the future when I was in high school; I just tanned because it was normal to me." 

Willoughby knows she'll deal with the consequences of tanning for the rest of her life. She's at high risk for developing melanoma but is now doing everything she can to ensure that she's around for her husband, Cody, and their young son, Kayden, for years to come. 

"Learn from other people's mistakes," she wrote on Facebook. "Don't let tanning prevent you from seeing your children grow up. That's my biggest fear now that I have a two-year-old little boy of my own."

Topics: health, healthcare, nurses, doctors, medical, cancer, treatment, skin, tanning beds, basal cell carcinoma, tanning, skin cancer, melanoma, dermatology

8-Year-Old Meets With Bone Marrow Donor Who Saved His Life

Posted by Erica Bettencourt

Tue, May 05, 2015 @ 12:26 PM

By SYDNEY LUPKIN

http://abcnews.go.com 

kabc bone marrow donor 02 jc 150504 4x3 992 resized 600If not for a stranger halfway around the world, 8-year-old Grant Berg wouldn't be alive today, his mother said.

Grant needed a bone marrow transplant, but after an international search, it was an 18-year-old German college student who came to his rescue in 2011, Grant's mother, Kristi Berg told ABC News. And on Sunday night, Grant and his hero met for the first time at the Los Angeles International Airport.

"I've imagined it so often in my mind and now it is reality," Grant's bone marrow donor, Marvin Zumkley, 22, told KABC-TV, ABC's Los Angeles station. "It was crazy. It was overwhelming, and it was just a good feeling."

A year and a half before the transplant, Grant was diagnosed with aplastic anemia, a rare but serious condition in which the bone marrow stops producing new blood cells, Berg said. This includes red blood cells, which carry oxygen; white blood cells, which fight off infection; and platelets, which mend blood vessels and stop bleeding, according to Dr. Hillard Lazarus, who directs UH Case Medical Center's novel cell therapy program in Cleveland but has not met or treated Grant.

"You need to treat this thing," Lazarus said, adding that it's often unclear what causes aplastic anemia. But only about 600 to 900 people are diagnosed with it every year.

Berg said Grant was getting different kinds of transfusions every week for a year and a half before the transplant.

"For a year and a half, he lived off other people's blood," Berg said. "I can't even count the amount of transfusions he had."

And then Zumkley's bone marrow changed Grant's life, she said. “It means everything to me," she added.

Grant was also born with only part of his cerebellum, so he'll be tested later this year for genetic conditions, she said.

After staying up well past his bedtime to meet Zumkley, Grant fell asleep in the car on the ride home to Temecula, California, Berg said. The plan is for Zumkley to relax for a few days, visit Disneyland and find other ways to enjoy southern California and get to know Grant, she said.

Topics: health, healthcare, medical, hospital, patient, treatment, bone marrow donor, bone marrow

Time to Prove Hospital Disinfectants Work, FDA Says

Posted by Erica Bettencourt

Tue, May 05, 2015 @ 12:21 PM

BY MAGGIE FOX

www.nbcnews.com 

nc handwashin 140130 d2a038564c98deb8fe0d0a9589bd78b7.nbcnews fp 1440 600 resized 600Hospital workers wash their hands hundreds of times a day. Nurses are constantly using alcohol gels, chemical wipes and iodine washes on themselves and on patients.

Now that there's a hand sanitizer dispenser at every hospital room door, it's time to check that they actually do work as well as everyone assumes and that they are safe, the Food and Drug Administration says.

Up until now, FDA's just accepted that these products work as intended and are safe. But now, FDA says, there are tests available to actually prove they do. And because of the emphasis on hospital infections, institutions are using the products far more frequently than even 10 years ago and in many different ways.

So FDA issued a proposed plan Thursday for reclassifying some of the products, and for requiring makers to show they are safe and effective.

"We're not asking for any of these products to come off the market at this time."

In the meantime. FDA says, there's nothing for consumers to worry about and hospitals should continue using the products as they have been.

"What it seems they are doing is good due diligence," says Dr. Susan Dolan of Children's Hospital Colorado and the Association of Professionals in Infection Control.

"They are trying to look at the products, look at how they are being used today, how things have changed," she added.

The FDA proposes new rules making companies submit new studies looking at safety issues such as whether heavy, chronic use of the some of the products may cause them to soak in through the skin, or cause resistant bacteria to evolve.

Products that are not shown to be safe and effective by 2018 would have to be reformulated or taken off the market.

"We're not asking for any of these products to come off the market at this time. We're just asking for additional data," Theresa Michele, a director in FDA's drug center, said in an interview with The Associated Press. "And we're likewise not suggesting that people stop using these products."

Alcohol, iodine benzalkonium chloride and other germ-killers have been used for decades. But not to the degree that they are now.

"Twenty years ago you didn't find people using antiseptic gels 100 times a day. It just didn't happen," Michele said.

FDA points to studies that show some of the products might be absorbed into the body at higher levels than previously thought, showing up in blood and urine. Dolan says not all the studies show this, but it's worthwhile doing more checks.

"It's timely and it makes sense," Dolan said. "I do think consumers should not be worried. These are very effective products."

The FDA last updated its review of health care hand cleaners in 1994.

"They are trying to look at the products, look at how they are being used today, how things have changed."

"We emphasize that our proposal for more safety and effectiveness data for health care antiseptic active ingredients does not mean that we believe that health care antiseptic products containing these ingredients are ineffective or unsafe, or that their use should be discontinued," FDA said in its announcement.

The agency agreed to complete its review after a three-year legal battle with the Natural Resources Defense Council, an environmental group that accused the FDA of delaying action on potentially dangerous chemicals. In 2013 the FDA agreed to a legal settlement that included timetables for completing the review of various chemicals, including health care cleaners.

Environmentalists are mainly concerned about an ingredient called triclosan, which is used in most antibacterial soaps marketed to consumers. The agency issued a separate review of triclosan-containing consumer products in late 2013, saying more data are needed to establish their safety and effectiveness.


Topics: FDA, health, safety, nurses, doctors, medical, patients, hospitals, hand sanitizer, disinfectants

Preterm Birth Alters Brain Connections Linked To Cognitive Functioning, Study finds

Posted by Erica Bettencourt

Tue, May 05, 2015 @ 12:00 PM

Written by Honor Whiteman

www.medicalnewstoday.com 

preterm baby resized 600Infants born preterm are known to be at greater risk for neurodevelopmental disorders. Now, a new study by researchers from King's College London in the UK brings us closer to understanding why - premature birth reduces connectivity in brain regions linked to cognitive functioning.

First author Dr. Hilary Toulmin, of the Centre for the Developing Brain at King's College, and colleagues publish their findings in the Proceedings of the National Academy of Sciences.

Preterm birth - defined as the birth of an infant before 37 weeks gestation - affected more than 450,000 babies in the US in 2012.

It is a leading cause of neurological disability among children in the US. Babies born preterm are at higher risk of cerebral palsy, autism and attention-deficit hyperactivity disorder (ADHD), among other intellectual and developmental conditions.

For their study, Dr. Toulmin and colleagues set out to gain a better understanding of the brain connectivity among babies born preterm in an attempt to uncover clues as to why preterm babies are more likely to develop neurodevelopmental problems.

The researchers used functional magnetic resonance imaging (fMRI) to analyze the connectivity between two specific brain regions - the thalamus and the cortex - among 66 infants. Of these, 47 were born prior to 33 weeks gestation and 19 were born at full term - between 37 and 42 weeks gestation.

The team says they focused on the connectivity between the thalamus and the cortex because these are the brain connections that develop quickly during preterm infants' care in neonatal units.

Preemies showed reduced connectivity in brain area linked to higher cognitive functioning

Among the babies born at full term, the researchers found the connectivity between the thalamus and the cortex was very similar to that of adults, which the researchers say supports previous findings that infants are born with mature brain connections.

Among the preterm infants, however, the team identified reduced connectivity between areas of the thalamus and areas of the cortex associated with higher cognitive function. This may explain why preterm babies are at greater risk of neurodevelopmental problems later in childhood, say the researchers.

What is more, brain scans of the preterm infants revealed increased connectivity between the thalamus and an area of the primary sensory cortex that plays a role in processing signals from the face, lips, jaw, tongue and throat.

Preterm infants' earlier exposure to breastfeeding and bottle feeding may explain this finding, according to the team.

The team says the earlier a preterm baby was born, the more pronounced the differences were in brain connectivity.

Overall, the team believes their findings bring us a step closer to understanding why infants born preterm are at higher risk of neurodevelopmental problems.

Senior author Prof. David Edwards, also of the Centre for the Developing Brain at King's College, says modern science has allowed the team to assess brain connectivity among preterm infants - something he says would have been "inconceivable" only a few years ago.

"We are now able to observe brain development in babies as they grow, and this is likely to produce remarkable benefits for medicine," he adds.

Dr. Toulmin says the next steps from this research will be to gain a better understanding of how their findings are associated with learning and developmental problems among preterm children as they get older.

Topics: birth, newborn, health, healthcare, brain, nurses, doctors, medical, hospital, treatment, NICU, health studies, preterm birth, cognitive functioning

Tutu Tuesday Brings Smiles to Florida Children's Hospital

Posted by Erica Bettencourt

Mon, May 04, 2015 @ 12:39 PM

By FREIDA FRISARO

http://abcnews.go.com 

WireAP 81568d5fb53a4d3cb4394b05626b814e 16x9 992 resized 600One morning last summer, Tony Smith slipped a multicolor tutu over his scrubs in the pre-op ward of a South Florida hospital to grant the wish of a young patient heading to surgery.

A photo of the tutu-clad Smith quickly became a hit online and within weeks, Tutu Tuesday was born at Joe DiMaggio Children's Hospital.

"That day, it was all about making a patient feel comfortable. Having me put on the tutu made her feel better," said Smith, an operating room assistant who has worked at the Hollywood, Florida, hospital for almost five years. "I never knew I would have that much impact. I didn't expect it to go viral."

But it did. Once employees saw the shot, they started asking Lotsy Dotsy — resident clown and unofficial keeper of the tutu — for their own frilly skirts to wear. Department by department, hospital staff adopted Tutu Tuesday.

It begins outside the hospital named for a baseball legend, where visitors are greeted by a valet whose tutu clashes with his normal uniform — shorts and a baseball jersey.

"People laugh and ask why I'm wearing a skirt," said John Aristizabal, who takes good-natured kidding as he parks cars. "It's all for the kids, to catch a smile."

On Tutu Tuesday, smiles are contagious.

Inside the hospital, tutus are everywhere. Doctors, nurses, technicians and receptionists don the colorful layers of tulle, decorated with polka dots and fancy bows as they go about the business of tending to patients. Even Nutmeg, the in-house therapy dog, has a specially designed pink tutu. Hospital administrators also play along, wearing tutus over their business suits.

Smith said he could have never imagined that such a simple act would catch on.

"It's for the patients," Smith said. "Just seeing you in a tutu brightens their day, and it can keep them from thinking about what's really going on."

That's exactly what pediatric anesthesiologist Dr. Bob Kaye has been doing for years. He's worn a variety of funny hats and wigs to help ease the fears of his young patients. Now he's added a tutu to his routine and has found that his patients and their parents like the distraction.

"If you can dress in a way that it not threatening and silly, maybe, and make the medical professional look not like the last person who gave them a shot in the doctor's office, then it's a lot easier to feel comfortable with them," he said. "I think it's an ice breaker."

On a Tuesday morning in March, Laurel Barnett and her 13-year-old daughter Julia arrived about 5:45 a.m. for surgery.

"Of course, not having any coffee and then coming in and seeing everyone in tutus is quite amusing," Barnett said. "It's not what you expected to see. It does give children a sense of relief that these people are not only here to help them, but there to have fun as well. It kind of takes their mind off of things."

Smith says he's not bothered at all by the stares and giggles as he makes his way through the hospital's corridors every Tuesday. He even offered his tutu to 12-year-old Brayden Wilmsmeyer, who along with his 10-year twin sisters Leah and Lexi spent spring break getting respiratory treatment at Joe DiMaggio.

The twins had borrowed tutus from two nurses for an impromptu photo session.

"Remember, you are a real man," Smith told Brayden as he pulled the tutu over his pants. "Don't let anyone tell you otherwise just because you're wearing a tutu."

Topics: health, healthcare, nurses, doctors, children, medical, patients, hospital, treatment, children's hospital, medical staff

FDA Revisits Safety Of Health Care Antiseptics Such As Purell

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 11:51 AM

www.foxnews.com 

hand sanitizer istock660 resized 600After roughly 40 years, U.S. health regulators are seeking data to see if the cocktail of ingredients in antiseptics used in hospitals, clinics and nursing homes are as safe and effective as they were once considered.

The Food and Drug Administration said on Thursday it is asking manufacturers for more data, including on absorption, potential hormonal effects and bacterial resistance of thehe 'active' ingredients in antiseptics, to see if they are still appropriate for use in a health care setting.

Since the review of health care antiseptics in the 1970s, things have changed, the FDA noted, alluding to a shift in frequency of use, hospitals' infection control practices, technology and safety standards. (1.usa.gov/1EUrzCd)

An independent panel of experts to the FDA raised similar concerns last year. In 2013, the regulator issued a warning to manufacturers, saying it was aware of at least four deaths and multiple infections caused by over-the-counter antiseptics. (1.usa.gov/1DNxOSp)

Commonly used active ingredients in health care antiseptics include alcohol and iodine. Data suggests that, for at least some of these ingredients, the systemic exposure is higher than previously thought, the agency noted.

"We're going to try to answer their questions in great detail as called for, but we believe the FDA already has sufficient data on these products," said Brian Sansoni, a spokesman for American Cleaning Institute (ACI), a trade association for the cleaning products industry.

The ACI represents antiseptic ingredient and product makers such as Gojo Industries Inc, the maker of Purell hand sanitizers; Dial Corp, a unit of Germany's Henkel (HNKG_p.DE); Ecolab Inc and Steris Corp.

The FDA said no health care antiseptics were going to be pulled off shelves as of now, and that their review excluded home-use antiseptics such as antibacterial soap and hand sanitizers.

The new data request relates only to health care antiseptics covered by the over-the-counter monograph, a kind of "recipe book" covering acceptable ingredients, doses, formulations and labeling. Once a final monograph is implemented, companies can market their product without having to go through the FDA.

Companies will have one year to submit the data, which the FDA will evaluate before determining if the OTC monograph needs to be revised.

"We're concerned if the FDA takes maybe a too narrow view regarding the safety and effectiveness data – depending how the final rule ends up – they could take effective products or ingredients off the shelves," Sansoni said.

Topics: FDA, nursing, nurses, doctors, data, medical, hospital, hospitals, clinics, antiseptics, Purell, sanitizers, nursing homes

Lives Of Three Babies Rescued By 3D-Printed, Growth-Flexible Implants

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 11:46 AM

Written by Markus MacGill

www.medicalnewstoday.com 

kaiba gionfriddo resized 6003D printing has come to the rescue of severe cases of a childhood disease in which the windpipe is softened, leading to collapse of the airway and breathing failure. Previously lacking any adequate intervention, tracheobronchomalacia has found an innovative fix in three babies whose condition presented them with little chance of reaching young childhood.

Researchers at the University of Michigan's C.S. Mott Children's Hospital in Ann Arbor say the three boys have become the "first in the world to benefit from groundbreaking 3D-printed devices" to stent their airways in such a way as to allow the supports to keep up with their growth.

A follow-up of all three patients published in the journal Science Translational Medicine shows the personalized bioresorbable splint implants have worked with "promising results."

Pediatric tracheobronchomalacia (TBM) sees excessive collapse of the airways during breathing that can lead to life-threatening cardiopulmonary arrests (halted heart and breathing).

The cartilage supporting the airway can strengthen as children with the condition grow, the study paper goes on to explain, but severe cases of the disease require aggressive treatment - and those children are at "imminent risk of death."

Before this new approach to provide an early treatment option for TBM, the only conventional therapies available also carried life-threatening complications of their own.

Babies needed tracheostomy tube placement with mechanical ventilation, requiring prolonged hospitalization, and complications often led to cardiac and respiratory arrest. For example, the rate of respiratory arrest owing to tube occlusion runs as high as 43% of pediatric tracheostomy procedures a year.

Survivors: Kaiba, Ian and Garrett

But none of the newly developed 3D-printed devices have caused any complications for the three children treated, including Kaiba, who at 3 months old was the first to receive the new technology, 3 years ago. The stents were also inserted into 5-month-old Ian and 16-month-old Garrett.

Designed to accommodate airway growth while preventing external compression over a period of time before bioresorption, the technology allows for the particular problem of radial expansion of the airway over the critical period of growth. "If a child can be supported through the first 24 to 36 months of tracheobronchomalacia, airway growth generally results in a natural resolution of this disease," write the authors.

Senior author Dr. Glenn Green, associate professor of pediatric otolaryngology at C.S. Mott, says: "Before this procedure, babies with severe tracheobronchomalacia had little chance of surviving. Today, our first patient Kaiba is an active, healthy 3-year-old in preschool with a bright future." Dr. Green adds:

 

"The device worked better than we could have ever imagined. We have been able to successfully replicate this procedure and have been watching patients closely to see whether the device is doing what it was intended to do.

We found that this treatment continues to prove to be a promising option for children facing this life-threatening condition that has no cure."

 

Dr. Green describes in the video below how he and his colleagues at the University of Michigan worked on finding the solution.


Dr. Green strives enthusiastically for the lives of babies born with the condition, which he says in a post on the hospital's Hail to the little victors blog is often misdiagnosed as treatment-resistant asthma. He adds that it is a rare congenital condition affecting about 1 in 2,200 births, and the severe cases are even rarer, with most children growing out of the milder cases by 2 or 3 years of age.

"Kaiba's parents, April and Bryan, were left watching helplessly each time he stopped breathing, praying that something would change and doctors' predictions that he would never leave the hospital again weren't true," writes Dr. Green in 2013.

The 3D-printed splints were computational image-based designed to be customizable so that the following parameters could be made bespoke to the individual patient's anatomy on "the submillimeter scale:"

  • Inner diameter, length and wall thickness of the device
  • Number and spacing of suture holes.

Not being a closed cylinder, the design of the tubes gave an opening to allow placement but also expansion of the radius as the airways grew. All the inserts placed around the airways were made of polycaprolactone, a polymer that harmlessly dissolves in the body at a rate to allow the technology time to support the growing cartilage.

For Garrett's bespoke device on his left bronchus, the opening had a spiral shape to it, to allow a device to be fitted concurrently around, and grow with, his right bronchus, too.

Freedom from intensive care treatments

The Michigan team also share findings showing that the success of the devices meant the young children were able to come off of ventilators and no longer needed paralytic, narcotic and sedating drugs.

There were improvements in multiple organ systems and problems that had prevented the babies from absorbing food, so now they could be free of intravenous therapy.

The research doctors had received urgent approval from the US Food and Drug Administration to do the procedures, but it is early days for the strategy to become routine for babies with TBM. The case report published today was not designed to test the safety of the devices - so it may yet be possible that rare complications are found to result from treatment in some cases. Dr. Green says:

"The potential of 3D-printed medical devices to improve outcomes for patients is clear, but we need more data to implement this procedure in medical practice."

The specialist surgeon performing the operations, Dr. Richard Ohye, head of pediatric cardiovascular surgery at C.S. Mott, believes the cases provide the groundwork for a potential clinical trial in children with less-severe forms of TBM.


Topics: 3-D printing, medical technology, health, healthcare, children, medical, patients, hospital, patient, treatment, babies, TBM

'Bubble girl' Is Allergic To Life

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 11:31 AM

By Jacque Wilson and Deborah Brunswick

www.cnn.com 

150429173910 orig allergic to life brynn duncan mast cell activation syndrome 00010110 large 169 resized 600The cracker or the bite of ice cream -- Brynn Duncan still isn't sure which one sent her into anaphylactic shock that day. Her food allergies change so frequently, keeping track is almost pointless. 

It was just another day with another massive allergic reaction. 

She can always tell when one is coming on. "I just get this overwhelming sense of -- they call it impending doom." Her labradoodle, Moose, starts alerting, licking her hands frantically.

"I'll feel like I'm being stabbed in the stomach, and then it gets hard to breathe and my throat and tongue start swelling. And we have to treat it really fast." 

On that particular day in March, multiple EpiPens didn't slow the reaction. The paramedics who arrived to take Brynn to Greenville Memorial Hospital, or "Hotel Greenville" as she likes to call it, knew her well. When she asked for her security blanket, they knew to hand her her smartphone.

"New day, new crisis," Brynn quips as she tells the story, as if it's about her first day of college or a shopping trip gone wrong. It might as well be. When you're allergic to life, a near-death experience is no big deal. 

Center of attention

Less than a week after her trip to the hospital, Brynn, 21, is back at home in Easley, South Carolina. She lies on her back, her head near the foot of her bed, chattering away as her mom changes the access to her chest port. 

Melissa Duncan, a paralegal by day, dons a mask and surgical gloves before disinfecting the area around the tube that's connected to Brynn's jugular vein. The disinfectant burns, and Brynn's blood pressure hits 150/102. Her heart rate rockets to 128. 

"The meds we have to give her to keep her alive, she reacts to," Melissa says, shaking her head. "Never in a million years did I think I would be doing this. "

Brynn was seemingly a normal kid -- until she wasn't. Yes, she was a fussy baby. Yes, she got sick often as a child, Melissa muses out loud -- but what kid doesn't? Brynn was also incredibly energetic, always the center of attention. Her father, Barry, jokingly rues the day she learned to talk. She started taekwondo at the age of 9 and had her black belt by the time she was 11. That was the same year doctors diagnosed Brynn with IBS, or irritable bowel syndrome. 

"She's always been --" Melissa Duncan pauses. 

"High maintenance!" Brynn fills in with a laugh. 

It wasn't until shortly before her 16th birthday in 2010 that Brynn had her first serious allergic reaction. The next two years became a blur of sick days and doctors' appointments.

Brynn saw specialist after specialist. The gastrointestinologist diagnosed her with gastroparesis, or partial paralysis of the stomach muscles. A cardiologist said she had POTS, or Postural Orthostatic Tachycardia Syndrome -- meaning that when she stood up for longer than a few minutes, her blood pressure dropped, leaving her light-headed and nauseated. A Wake Forest doctor diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder that causes fragile skin and overly flexible joints. 

After doing hours of research, Melissa, Barry and Brynn came up with their own diagnosis: mast cell disease. They found a specialist online, Dr. Lawrence Afrin, who at the time was working in Charleston. They waited nearly nine months to see him, but hearing him confirm their suspicions was life-changing.

Mast cells are the regulators of your immune system. They're the ones that release histamine when a bug bites, or when you come into contact with an allergen. They basically sound the alarm that lets the rest of your immune system know something is wrong.

Until recently, the only mast cell disease doctors had identified was mastocytosis, which is characterized by "abnormal proliferation and activation" of the body's mast cells -- meaning there are way too many and they act in strange ways. 

But in the last few years doctors such as Afrin have started to recognize that there are many different layers to mast cell disease. For instance, Brynn has mast cell activation syndrome, meaning her mast cells act strangely, but they're not growing in number. 

"It's like I'm living in a 24/7 allergic reaction," Brynn explains simply. 

Fruit, vegetables, milk, soy, nuts, smoke, perfume, the sun -- you name it, Brynn is allergic to it. But it's not really about the specifics; the allergens change depending on how "angry" her mast cells are that day, she says. On good days, she can eat small amounts of plain meat or mashed potatoes. On bad days, even using her feeding tube causes her extreme pain. 

Not everyone with mast cell activation syndrome has it as bad as Brynn does. "Oh God, no," Afrin says when asked. "No, no, no, no." 

But mast cells are located in your connective tissue, including your skin and the lining of your stomach and intestine. They can affect every system in the body, Afrin says, so the disease is capable of causing all the symptoms Brynn experiences.

You have to ask yourself, he says: "Is this poor patient so uniquely unlucky to have acquired so many different, independent problems? Or is it more likely that there is just one thing going on?"

Of course, having a diagnosis didn't make living with mast cell disease any easier. 

In 2012, Brynn was admitted to the hospital 30 times. She started having seizures and episodes of dystonia -- painful, violent muscle contractions that are "scary to see and scary to experience." On multiple occasions, doctors have had to put casts on her legs to prevent her joints from bending in the wrong direction.

"I've seen doctors and nurses step back, kind of like 'What is this?'" Barry Duncan says. 

Every time she went to the ER, Brynn was given a large dose of steroids to calm the inflammation. She's now steroid dependent -- and likely will be for life. 

"We could be here for days, and you still would not understand all the inner workings of Brynn and all of her medical issues," Melissa Duncan says. "But I think the underlying one is the mast cell disease, which is a beast, and continues to become a bigger beast, day by day."

 Living in a bubble

Brynn spent her 19th birthday in the hospital. An allergic reaction made her miss a zip lining trip for her 20th. On December 31, her 21st birthday, when many young adults would be out celebrating the legal drinking age with friends, she was at home still recuperating from Christmas. She had joined the holiday festivities by eating a special pizza -- made with fake bread and fake cheese. 

"It's nasty," Barry Duncan says with a laugh. "It's the worst pizza you've ever tasted." But "for her, the worst pizza you've ever had ... tastes really good."

Brynn dreams about real stuffed crust pizza sometimes. And mozzarella sticks. Occasionally she lets her spunky attitude drop, and you see that she understands the effect her illness has on those around her. 

Her parents have spent weeks sleeping in cramped hospital chairs. Her younger siblings have missed vacations and school ceremonies; they've learned how to inject Brynn with an EpiPen, and how to hold her limbs still during a dystonia episode. 

"There's a lot of guilt that goes along with having a chronic illness," Brynn says. "You feel like a burden. And people can tell you you're not, but no matter what, in your head, you feel that you are."

She has moments when she gets jealous of her high school friends who are doing all the things she can't -- attending college, moving out, finding boyfriends. She and her new friends, others with chronic illnesses she met online, have a saying: "Single and ready to mingle -- as long as you have good health insurance."

And with a giggle, the dark moment passes. Skyping with her friends keeps her spirits up. She's prolific on Instagram, with more than 5,300 followers, and writes regularly on her blog, which is called "Brynn's Bubble." 

"A lot of people with this disease ... do, in a sense, have to live in a bubble, because it's really difficult to get the symptoms under control," Brynn says. "You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven't felt alone."

Over the last two years, Brynn and her family have made progress in managing her disease. She was one of the first patients in the nation to be put on a continuous IV of antihistamine. Intravenous immune globulin, or IVIG, therapy, when a healthy donor's plasma is used to boost a patient's immune system, cut in half the number of drugs she needs. 

Of course, she still needs a lot -- a compounding pharmacy delivers a box to her house once or twice a week. The meds make her brain foggy. She punctuates conversations with "Where'd that thought go?" But that doesn't stop her from talking. She plans to keep talking until mast cell disease receives the attention she feels it deserves. 

"'You don't look sick' -- that's one of the comments that I get a lot. Or they say, 'At least it's not cancer,' and that's another hard one, because these illnesses can be just as devastating," Brynn says. "The difference is they're not understood. And the only way to change that is to somehow bring awareness to it."

Early in her taekwondo career, Brynn's instructor told her that she could win a match before it even began -- just by staring down the opponent. She plans to fight mast cell disease the same way.

 


Topics: allergies, health, healthcare, medical, hospital, patient, treatment, mast cells, allergic, EpiPens, mast cell disease

Individualized Discharge Planning May be Best for Some Elderly Patients

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 10:10 AM

Alexandra Wilson Pecci

www.healthleadersmedia.com 

315872 resized 600Hospitals have a broader responsibility to elderly trauma patients than just the time spent within their walls, and should consider updating their strategies to ensure the best outcomes for these patients, research suggests.

Elderly trauma patients are increasingly likely to be discharged to skilled nursing facilities, rather than inpatient rehabilitation facilities (IRF), finds a study in The Journal of Trauma and Acute Care Surgery published in the April issue.

Discharge to skilled nursing facilities for trauma patients has, however, been associated with higher mortality compared with discharge to inpatient rehabilitation facilities or home.

Researchers wanted to "better characterize trends in trauma discharges and compare them with a population that is equally dependent on post-discharge rehabilitation." They not only examined trauma discharges, but also discharges of stroke patients, who have been taking up more inpatient rehabilitation facility beds.

Using data from 2003–2009 data from the National Trauma Data Bank and National Inpatient Sample, the retrospective cohort study found that elderly trauma patients were 34% more likely to be discharged to a skilled nursing facility and 36% less likely to be discharged to an inpatient rehabilitation facility. By comparison, stroke patients were 78% more likely to be discharged to an inpatient rehabilitation facility.

This is despite the findings of a 2011  JAMA study of patients in Washington State showing that "Discharge to a skilled nursing facility at any age following trauma admission was associated with a higher risk of subsequent mortality."

The Journal of Trauma and Acute Care Surgery study notes that "elderly trauma patients are the fastest-growing trauma population," which leads to the question: Where should hospitals be investing their money and time to ensure the best outcomes for these patients?

"I think hospitals should be investing in post-acute care discharge planning," says Patricia Ayoung-Chee, MD, MPH, Assistant Professor, Surgery, NYU School of Medicine, and lead author of the study. "What's the best post-acute care facility for patients? And it may end up needing to be individualized."

She says reimbursement and insurance factors have "played more of a role than anybody sort of thought about" in discharges, rather than what is always necessarily best for patients.

For example, to be classified for payment under Medicare's IRF prospective payment system, at least 60% of all cases at inpatient rehab facilities must have at least one of 13 conditions that CMS has determined typically require intensive rehabilitation therapy, such as stroke and hip fracture.

"I think the unintended consequence is that we may be discharging patients to the best post-acute care setting, but we also may not be," Ayoung-Chee said by email, and that question "is only now being looked at in-depth."

She says hospitals should think about truly appropriate discharge planning upfront.

Proactive Hospitals
For instance, at admission, hospitals can find out who the patient lives with, or what their social support system is like. If they have a broken dominant hand after a fall, will they be able to get help with their groceries? Do they live alone? Will they be able to use the bathroom?

Caring for patients also doesn't end when patients leave the hospital, she adds. Hence the study's title: "Beyond the Hospital Doors: Improving Long-term Outcomes for Elderly Trauma Patients."

Ayoung-Chee says the next step in her research is to look at a more longitudinal picture, following individual patients to see what factors play into their function or lack of function.

But hospitals can do some of that work on a smaller scale, with internal audits to determine which facilities have the best post-acute care outcomes. For instance, they could spend time examining which facilities had fewer readmissions compared to others, as well as how long it took patients to get home and their how satisfied they were with their care.

Other research is also trying to determine which facilities are best for elderly trauma patients. For instance, a second study, also published in The Journal of Trauma and Acute Care Surgery, shows that geriatric trauma patients have improved outcomes when they are treated at centers that manage a higher proportion of older patients.

One of the overarching takeaways from Ayoung-Chee's research is the idea that hospitals have a broader responsibility to patients than just the time spent within their walls.

"What we do doesn't just end upon patient discharge. If we truly want to get the biggest bang from our buck, we're going to have to think about the entire continuum," she says.

That could range from working to prevent falls that can cause elderly trauma, to seeing patients through all of the appropriate care needed to expect a good functional outcome. Good healthcare for elderly trauma patients should extend beyond the parameters of morbidity and mortality, and toward returning patients to their original functional status and, ultimately, independence, says Ayoung-Chee.

"Our long-lasting effect as healthcare providers isn't just what we do in the hospital," she says. "And we have to start thinking outside."

Topics: nursing, health, nurse, nurses, data, medical, patients, patient, elderly, seniors, trauma discharges, discharge, trauma patients, inpatient, helthcare, rehabilitation

IdentRx Promises to Prevent Nearly All Medication Errors

Posted by Erica Bettencourt

Wed, Apr 29, 2015 @ 11:08 AM

www.medgadget.com 

describe the imageMedication errors continue to plague the clinical community and even rare cases of mistakes can make a big splash in the news. And for a good reason: we all expect to be treated than harmed when receiving medical care. A new device is currently in the third round of pilot testing, including at major retail pharmacies and Purdue University, that may help avoid prescription errors altogether. The IdentRx system from PerceptiMed, a Mountain View, California firm, optically analyzes every single pill that will be given to a patient to make sure it precisely matches each prescription.

It is the only device that visually inspects each pill, recognizing the manufacturer imprints on them all. The system confirms that the pills themselves, and not only the container bottles, match the issued prescriptions, hopefully preventing errors just before the pills are handed to the patients.

Topics: medical technology, prescription, medication errors, technology, health, healthcare, medication, medical, patients, medicine, patient

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