A Boston Strong banner hangs at the Boston Harbor Hotel on Tuesday. (Bill Sikes/AP)
Early in the afternoon last April 15, Dave Reisman was laughing as he left a meeting to update hospitals around the city about conditions at the Boston Marathon. It looked like a light year for patients. The weather was sunny, but not too hot.
Reisman, an emergency preparedness director at Mass General, told a group gathered Tuesday to review lessons learned the day of the bombings that he will never forget walking out of that meeting, hearing his pager go off, and reading the message.
“Reports of explosive devices in Copley Square: one detonated, another suspected,” Reisman recalled the message saying. MGH treated 97 patients that afternoon, in an emergency room equipped to handle 44.
“The environment in the [emergency department] was intense,” said Maryfran Hughes, nursing director for emergency services. “Many people were arriving and people didn’t know what was going on. The professionalism and compassion of the nurses really transcended their own fears. They didn’t know what was happening out there.”
None of the Boston hospitals, including MGH, lost a patient that day or in the days and weeks that followed, even though the pressure did not let up. Trauma surgeon David King says for hospital staff, it was a marathon week.
Heather Abbott, left, and Roseann Sdoia are both amputees who developed a lasting bond after last year’s bombing. (Jesse Costa/WBUR)
On the evening before the one-year anniversary of the day that changed their lives, Roseann Sdoia and Heather Abbott met up for dinner. The two women had been acquainted before shrapnel shredded the lower part of Abbott’s left leg and most of Sdoia’s right leg.
Now they’re fast friends who push and inspire each other and offer support and counseling. The close bonds among many of the bombing survivors, first responders and their families are a reminder that Tuesday’s anniversary is mixed.
‘It’s Still Kind Of Surreal’
Abbott was waiting to get into the Forum on Boylston Street last April when the second bomb went off. Sdoia had just stepped out of the restaurant to look for a friend nearing the finish line.
Abbott and Sdoia had come to the Forum with separate groups of mutual friends. The two women didn’t realize they were both amputees until they saw each other at Spaulding Rehabilitation Hospital. They still have a hard time accepting what happened.
“I’m getting a little bit closer, but it’s still kind of surreal to me,” Sdoia said Monday evening.
“Sometimes I’ll wake up in the morning, to get out of bed, and I’ll look down and realize I have to put my leg on,” Abbott said. “And I think, this is never going away.”
Abbott looked down at her left calf and foot. She was wearing a wedge sandal on her dress-up leg. Dress legs come in different heel sizes. There is an adjustable heel, but Abbott said it is not very stable.
“When I inventoried my closet,” Abbott recalled, “four inches was the most popular one, so that’s what I went with.”
Sdoia wore black sandals. The toenails on both feet were a deep purple. Sdoia’s testing a new way to keep the sandal on her carbon fiber foot.
Walking is “not very smooth,” Sdoia said with a laugh. “At any moment, that sandal could come off. I mean it’s velcroed on right now, to the bottom of my foot.”
Sdoia joked about being jealous that Abbott was back into her tight jeans first, wearing heels first and running, again, first. Sdoia, whose amputation is above the knee, has had a more difficult recovery. But each women feels like she’s constantly being fitted for a new socket as her limb shrinks. Abbott has gone through five different-sized sockets and is due for another. Continue reading →
In this 2013 WBUR file photo, marathon bombing survivor Mery Daniel works with occupational therapist Becky Buttiglieri outside the new Spaulding Rehabilitation Hospital. (Jesse Costa/WBUR)
When the twin explosions hit the Boston Marathon last April, Spaulding Rehabilitation Hospital was 12 days away from moving into its new building at the Charlestown Navy Yard.
Among the first patients on Spaulding’s move-in day were more than a dozen marathon survivors — some just released from acute care hospitals. They’d lost limbs, suffered burns and nerve damage, and some still had shrapnel embedded in their bodies.
“What happens in great places like Mass. General, they save people’s lives that would have otherwise been lost. We like to say once they come to rehab we give the quality of life back after that life’s been saved,” said David Storto, president of the Spaulding Rehabilitation Network and Partners Continuing Care, which includes three other hospitals, as well as 23 satellite facilities.
“People just generally, at the onset of a significant disability, they’re more concerned about the basic things in life,” Storto said. “Are they going to be able to walk again? Are they going to be able to dress themselves again? Are they going to be able to brush their teeth again without being dependent, and requiring support of other people?”
The AP reports that a federal judge blocked Massachusetts from banning the powerful new painkiller Zohydro.
U.S. District Court Judge Rya Zobel on Tuesday issued the preliminary injunction after the maker of the drug, Zogenix, said in a lawsuit that the ban ordered by Gov. Deval Patrick was unconstitutional.
Zobel said in issuing the injunction that Massachusetts appears to have overstepped its authority in banning the drug, which had been approved by the U.S. Food and Drug Administration.
Patrick ordered the ban after declaring a public health emergency in light of widespread prescription drug abuse in the state.
The judge said federal law preempted the state’s order.
By Judy Foreman
U.S. District Court Judge Rya W. Zobel today disappointed anyone who expected her to quickly strike down Gov. Deval Patrick’s ban on the sale of the new pain reliever Zohydro. She declined to rule on the drugmaker’s request to quickly but temporarily lift the ban, and is continuing to consider whether to lift the ban permanently.
Judge Zobel faces a difficult decision but not because Zohydro, as many media reports have said, is more potent than anything else on the market. It’s not, and we’ll get to that in a minute.
First, the legalities. It should be up to federal health officials, including the U.S. Food and Drug Administration, not governors, to make decisions about the safety (or lack thereof) of drugs. For better or worse, the FDA, after a long 2013 review, and against the vote of its own advisory committee, did approve Zohydro in October of last year.
Legally, and logically, it also made little sense in the first place – except politically — for a governor to focus on one particular drug when the whole class of drugs to which it belongs — opioids, also known as narcotics – is controversial precisely because that whole class of drugs has such a complex mix of risks and benefits.
In truth, Zohydro is probably not the wonder drug that its manufacturer, Zogenix, claims, nor is it the menace that critics assert. The furor over Zohydro is simply the latest example of how difficult it is to balance the legitimate needs of people in chronic pain who need long-acting opioids and the also-legitimate need to protect vulnerable people from getting their hands on drugs they might abuse.
The unique feature of extended-release Zohydro is that it contains the opioid hydrocodone, and only hydrocodone. Continue reading →
About a year ago, Jacob Daus found himself standing before a judge in drug court, again. The 25-year-old had just finished his fourth drug-related sentence in seven years at the Barnstable County Correctional Facility. Was there anything, the judge wanted to know, that might help Daus stay away from heroin and out of jail?
“He asked me if I could come up with a plan for my release cause they didn’t know exactly what to do with me, they were just holding me,” Daus said. “I offered to start the naltrexone.”
To try to stay away from heroin and out of jail, Jacob Daus started naltrexone. (Martha Bebinger/WBUR)
Daus had heard about the drug from another inmate. Naltrexone seals receptors in the brain. Picture lots of little cups. The drug creates a tight lid so that the cups cannot be filled with heroin, other opiates or alcohol.
Patients can take naltrexone pills, but they have to remember, and stay motivated, to do this daily. Daus opted to take the drug as a monthly shot, which is sold under the brand name Vivitrol. Naltrexone, Vivitrol, same drug, different ways to take it. Daus had three shots.
“I would say that was the happiest time of my life,” he said.
In those three months, Daus says his cravings for heroin almost disappeared. Continue reading →
Amidst concerns over a massive national increase in the use and abuse of prescription painkillers, health insurer Blue Cross Blue Shield of Massachusetts instituted a new policy to reduce pain medication addiction and misuse.
This week The Boston Globe reports that as a result of the new policy, Blue Cross has cut prescriptions of narcotic painkillers by an estimated 6.6 million pills in 18 months.
But Daniel P. Alford, MD, an associate professor of Medicine and director of the Safe and Competent Opioid Prescribing Education (SCOPE of Pain) Program at Boston University School of Medicine and Boston Medical Center, calls the policy “flawed and irresponsible.” Here’s Alford’s response:
By Dr. Daniel P. Alford
The Blue Cross Blue Shield of Massachusetts opioid management program was implemented to provide members with “appropriate pain care” and reduce the risk of opioid addiction and diversion.
In a recent Boston Globe report they claim “very significant success” with this program after 18 months because they have cut opioid prescriptions by 6.6 million pills.
Dr. Dan Alford
Is this really a measure of success and if so, for whom? It likely saves Blue Cross money but has it successfully achieved their program’s stated goals? Does decreased opioid prescribing mean more appropriate pain care? Does decreased opioid prescribing reduce the risk of addiction or diversion, or does it decrease access to a specific pain medication (opioids) for treating legitimate chronic pain? Is the observed decrease in opioid prescribing evidence that opioids have been overprescribed, as Blue Cross claims, or is it proof that instituting a barrier to opioid prescribing (prior authorization) will decrease prescribing even for legitimate need? Are patients with chronic pain really benefiting from this program? I doubt it.
Adding yet more paperwork for physicians will not improve pain care, decrease addiction or the numbers of accidental overdoses from prescription opioids. Those physicians who are unwilling (or ambivalent) to prescribe opioids even when indicated will use the prior authorization requirement as an excuse to continue not prescribing. Those who are overly liberal in prescribing will figure out the most efficient way to satisfy the insurance requirements for approvals. Physicians who responsibly prescribe opioids – that is, prescribing them only when the benefits outweigh any risks — will be saddled with more administrative burdens to justify their well thought-out treatment decisions.
Some physicians may ultimately decide that prescribing opioids isn’t worth the trouble despite known benefits for some patients. Continue reading →
As of today, the high-achieving suburb of Newton begins a new effort to combat stress in teens: helping their parents relax.
The town is hosting four seminars for parents to help them “relax and reboot” and learn some strategies to better take care of themselves and their stressed-out teenage kids.
In case you live in Newton and are thinking of attending, sorry. They’re already full. But the town is offering several related programs, including An Open Conversation on April 30 for parents to talk about “how we define success in a high achieving community and how that impacts the stress on our teens.”
National statistics suggest that teenage stress is at an all-time high, with kids apparently adopting adult-levels of stress, according to the latest American Psychological Association report on stress in America.
In Newton, the issue is particularly poignant because three Newton high school students took their own lives during the current school year.
But even before the suicides, Newton had decided to take a somewhat novel approach. It applied for and received a “mental health and well-being” grant — $30,000 over three years — to, in effect, allow students, parents and teachers to take a massive exhale and figure out ways, large and small, to take the edge off growing up.
Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)
By Dr. Annie Brewster
What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family were underway?
That’s what happened to Sue R. Levy.
In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM, a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing and, in many cases, an eventual lung transplant — a procedure with major risks. The LAM Foundation reports 10-year survival, following a lung transplant, at 47 percent.
Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1,300 documented cases in North America, LAM is poorly understood; currently, there are a few experimental medications in use, but no proven treatments exist.
Prior to the diagnosis, Sue, who lives in Brookline, Mass., had a successful career as a marketing executive, she was happily married, and she and her husband had decided to have kids. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually.
“My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things,” she said. LAM changed everything.
Suddenly, Sue was forced to redefine herself as someone with a chronic disease and squarely face her own mortality. In addition, she had to let go of some of her dreams, notably, her desire to get pregnant, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction.
Initially, she was angry. But the disease helped her focus on what she really cares about: she went to school to study nutrition and became a natural foods chef. In 2011, inspired by her own healthier lifestyle changes, she quit her marketing job and started Savory Living-Healthy Eating, a nutrition and health company that provides online healthy eating and cooking classes.
In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier.
Listen to Sue’s story here:
From ‘Healthy’ To ‘Terrifying’
If you had asked me before my LAM diagnosis I would have told you that I was a healthy person, that I am living a healthy life. There isn’t a disease in my family. This is something I don’t have to worry about and I’m doing great. What was so interesting is that the signs couldn’t have been clearer that I wasn’t. I was heavier, the energy wasn’t great. I had a lot of digestive problems and I faced infertility. But I just thought that was the way life was. I had had a lot of pain and it felt almost like this boa constrictor was around my midsection squeezing my rib cage.
So I went to the doctor and he said ‘You know I’m worried that maybe you have a blood clot in your lung, I want to go get a CT scan.’ And they did the scan and on our way back to our house I got a call from the doctor and he said ‘You need to come in right away,’ and I said ‘Oh, is it a blood clot in my lung?’ And he said no. And I said ‘Oh great!’ And he said ‘No, you need to come in right away.’
We got into the office and he actually said to me because he knew we were trying to conceive, and he said, ‘Life as you know it is about to change considerably. Continue reading →
For the past four years, I’ve been involved with a local nonprofit, the North Cambridge Family Opera, which stages original productions featuring cast members age 7 to grandma, and with a range of abilities. In 2011, I wrote about how performing in the group’s opera helped children with autism. This year, I was struck by the story of how music helps heal the past trauma of one young cast member, 8-year-old Aster, adopted from Ethiopia after her birth parents died. I asked Aster’s mother to write a bit about their experience. Here’s her post:
By Marina Vyrros
In the mid 1990s, I worked as a refugee aide in the Guatemalan rainforest.
Many people in that community — having fled horrific atrocities, like their villages being razed or worse — were suffering from post-traumatic stress.
Atrocities notwithstanding, a contingent of ranchero musicians somehow managed to lug homemade, oversized guitars to the camps and play music each night, often in the 100-degree heat.
While the NGO’s provided a valuable service — helping the people rebuild their external structures — the service that the ranchers provided, though perhaps less tangible, was invaluable. Their nightly gatherings, singing songs about their plight, helped the community to rebuild and heal internally.
Four years ago, when I adopted an almost 4-year old child from Ethiopia (who continues to recover from the trauma of having lost both birth parents during her formative, early childhood years) the lesson of the power of music was not lost on me.
Claudia M. Gold, a pediatrician, blogger and author of “Keeping Your Child in Mind: Overcoming Defiance, Tantrums, and Other Everyday Behavior Problems by Seeing the World Through Your Child’s Eyes,” explains what may be going on in my daughter’s brain:
“Severe meltdowns are common in children who have experienced early trauma, at the time when the higher cortical centers of the brain were not yet fully developed. Stress of a seemingly minor nature can lead the rational brain to in a sense go ‘off-line.’ The child will have access only to the lower brain centers that function more instinctively.”
Especially during her first few years in Cambridge, Aster’s meltdowns were epic, but music and dance have consistently provided the most important vehicle to help her regulate her emotions.
Before, she might bang on the walls, now, to relieve her frustration, she pounds on a djembe, an African drum, in an afterschool program; instead of crying over seemingly inconsequential things, now, to release her emotions she invents and belts out Whitney Houston-y type songs, tears streaming down her face. To release her energy — which is abundant — she dances around. Everywhere. It all helps.
Recently, over the past five months, Aster’s been singing, dancing and even acting with the North Cambridge Family Opera based in Cambridge. In this year’s production, “Rain Dance,” she and the other animals living on the South African savannah elect a Machiavellian lion in a desperate attempt to end the local drought. Trouble ensues.
All kinds of research suggests that music can minimize the symptoms of post traumatic stress and other types of trauma. A 2011 study found that guitar-playing can help veterans with PTSD drown out the traumatic memories of bombs blasting; and in 2008 researchers found some reduction of post-traumatic stress symptoms following drumming, in particular “an increased sense of openness, togetherness, belonging, sharing, closeness, connectedness and intimacy, as well as achieving a non-intimidating access to traumatic memories, facilitating an outlet for rage and regaining a sense of self-control.”
State House News Service’s Matt Murphy reports that residents who had trouble signing up for health insurance through the state’s troubled Health Connector website now have a little more time to do so:
Massachusetts residents who have had difficulty signing up through the Health Connector for unsubsidized health insurance coverage will be given an extra two weeks to enroll under an extension plan to be presented Thursday, two days after President Barack Obama announced a similar reprieve for frustrated consumers on the national level.
Sarah Iselin, the special advisor who Gov. Deval Patrick put in charge of fixing the state’s dysfunctional health insurance sign-up website, plans to discuss the change to the state’s open enrollment process on Thursday when the Health Connector board meets.
Mass. Health Connector website
Residents who have had trouble completing enrollment to due technical problems with the website will be allowed to shop online for unsubsidized plans through April 15, with payment due April 23 for coverage starting on May 1.
The open enrollment deadline was supposed to arrive on Monday, but the Obama administration announced this week that those who encountered problems shopping through the federal online marketplace would be given a similar two-week extension.
Murphy also reports that the Connector has been able to eliminate a massive backlog of paper applications from residents looking for subsidized health insurance:
After starting with a backlog of 72,000 applications in February and receiving an additional 1,000 applications a day, Connector staff, with the help of hundreds of workers brought on board through the consultant Optum, cleared the remaining 21,000 applications over the past week and officials are confident they can now keep up with new requests as they arrive.