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Life Lessons From An Ultra Rare, Potentially Fatal Disease

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

By Dr. Annie Brewster
Guest contributor

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:

Interview highlights:

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

Storytelling For Health: Doctor Promotes Intimate Patient Narratives

Marie Colantoni Pechet discussing her stage IV rectal cancer

Marie Colantoni Pechet talks about living with stage IV rectal cancer

By Dr. Annie Brewster
Guest contributor

My experience in the health care system — both as a physician and as a patient living with multiple sclerosis — has convinced me that the current practice of medicine squeezes out what is a most essential element of healing: the stories of peoples’ lives.

In response to this void, I started collecting patient’s stories in 2010, and these pieces have been featured here on CommonHealth, as part of the Listening to Patients series.

Through these deep connections, I’ve seen firsthand that there is tremendous healing power in stories — for both the storyteller and for those listening. Research supports this claim.

Last year, I launched Health Story Collaborative, Inc. a nonprofit dedicated to harnessing the healing power of stories through collecting, honoring and sharing these narratives. The goal is simple: to keep patients’ voices alive.

Last week, as part of the nonprofit, we launched a new program called Healing Story Sessions, live gatherings where patients share their narratives. I like to think of them as part “Moth” radio hour, part AA meeting (though of course, this isn’t about addiction: it’s all about standing up and sharing in a safe and supportive environment). The goal of these sessions – designed in collaboration with Jonathan Adler, Ph.D, an assistant professor of psychology at Olin College of Engineering in Needham, Mass., whose research focuses on the psychological function of our stories and their relationship with health — is to empower patients and build community.

Each session features two patient storytellers and about 15 of their invited “guests.” Prior to the event, storytellers work to craft a written narrative using Health Story Collaborative’s narrative guide, which provides some structure for eliciting these challenging stories. They also work with Adler and with me to shape what they’ve written. Then, when the time comes, they speak their narratives out loud for the selected audience.

The belief is that this public sharing is meaningful and therapeutic.

Last Wednesday, 30 of us gathered in a cozy room to hear the stories of Marie Colantoni Pechet, who has written about her cancer for CommonHealth, and Lara (who asked that her last name not be used). Marie is a 51-year-old mother with Stage 4 colorectal cancer who has been living with her disease for over six years. She is on a maintenance chemotherapy regimen and continues to thrive, surprising even her most optimistic doctors.

Lara, a 47-year-old mother of four children, has a fairly new diagnosis of Stage 2 breast cancer. She is now in the midst of chemotherapy treatment and awaiting surgery in May. Her mother died of this disease 15 years ago. Continue reading

West Nile Story: 400 Days In Hospital, A New View Of Health Care (And Life)

By Dr. Annie Brewster
Guest contributor

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.

I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

Listen to Charlie here: 

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths. Continue reading

From Spring Break To Quadriplegia, And Building A New Life

Larry Brennan and Emmie (Courtesy)

Larry Brennan and his dog Emmie (Photo: Mark Hunt)

By Dr. Annie Brewster

On March 19, 1991, Larry Brennan broke his neck.

He was 18 years old and suddenly paralyzed. He’s had to use a wheelchair ever since.

At the time of the accident, Larry was a freshman at the University of Massachusetts Amherst; he was in the Bahamas with friends on spring break. The details of the accident are fuzzy, he says, because he was intoxicated at the time, having been on a “booze cruise” all day. He remembers running down the beach, then nothing else. According to his friends, Larry dove into the water. The impact broke his cervical spine.

Initially, when his friends saw him lying face down in the water, they assumed he was snorkeling, and it was several minutes before they realized he was in trouble. He wasn’t breathing when they pulled him out. One of his friends knew CPR, and working with the others, tried to resuscitate him until the ambulance came. Larry coughed up sea water and started to breathe again, but his heart stopped and restarted numerous times before help arrived.

Larry was raised in Wakefield, Massachusetts. In high school, he was a popular, 6-foot-4-inch athlete. He played football and tennis, became an accomplished skier and had many friends. As a freshman at UMass, he was flourishing, and his spring break trip was a highlight.

The accident damaged his spinal cord at the C 5-6 level, basically his lower neck, leaving him a quadriplegic (meaning he has weakness in all four limbs). He can move his shoulders and his upper arms, but not his fingers, and he’s completely paralyzed from the upper chest down, with total weakness in his core trunk muscles and legs. However, Larry’s injury is considered “incomplete” in that his sensory nerve fibers were spared and his sensation is intact. For this, he feels lucky.

Continue reading

Save The Date: Jan. 30, Join Us For Stories Of Where Illness Takes You


Join us the evening of Jan. 30 for our first foray into face-to-face time: A screening of “Outside In,” a riveting, provocative 61-minute film about one woman’s remarkable journey after being diagnosed with ovarian cancer. A panel with the film’s star, Dr. Kasia Clark, its director, Kat Tatlock, and CommonHealth contributors. Also included: light dinner and a chance for us all to meet.

The event will start at 5:30 at WBUR, 890 Commonwealth Ave. in Boston. It’s free, but seats are limited. Please RSVP to events@wbur.org.

A Young Woman Confronts Her Fiancé’s Suicide

By Dr. Annie Brewster

Sara and Kerry met as students at Bates College in 2001. They were together for eight years, and planned to get married in August 2010. Last June, just two months before the wedding, Kerry committed suicide using a gun he purchased legally that same day. He was 27 years old. This was a complete surprise to everyone who knew him, and obviously devastating.

Kerry (pictured on right) committed suicide in June 2010. He was 27 years old

At the time, both Sara and Kerry were in graduate school in the Northwest: Sara was in Seattle, Washington, getting a Ph.D. in Molecular Biology, and Kerry was in Eugene, Oregon attending law school and pursuing a concurrent masters degree in conflict and dispute resolution. They completed their studies late last spring, full of energy, ambition and promise, and were planning to move back east before the wedding, for their careers and to be closer to Sara’s family in Maine. For Kerry, the move never happened.

Kerry had been plagued by chronic pain in his arms, back, and legs for over a year. As a student, he did not have cohesive medical care, which meant he saw multiple providers and had to tell his story over and over again. The cause of Kerry’s pain was never determined. None of his physicians had followed him over time, and none knew him well as a result. Kerry was not one to complain about pain, and indeed, until he developed these debilitating conditions, he had been an athlete in excellent physical health. At times, given the lack of a clear diagnosis, he felt that the legitimacy of his pain was called into question. Ultimately, he was left with a sense of desperation and hopelessness.

Suicide is a major public health problem. According to 2007 data, it is the 11th leading cause of death overall and 4th leading cause of death for adults 18 to 65 in the United States. Everyday, approximately 90 Americans commit suicide.

What can be done to prevent suicides like Kerry’s? Recently, Sara and Kerry’s father, Dr. Mike Lewiecki, addressed this issue in an article, “Time to Reconsider,” published last month in The Journal of the American Medical Association.

Here, Sara (who is now a post-doctoral fellow in molecular biology at Massachusetts General Hospital) speaks openly about her experience of Kerry’s suicide, and about trying to move forward in the face of such a tragic loss.

(Dr. Annie Brewster is a Boston internist who became interested in storytelling as a way to promote healing among patients. You can hear more of her stories here, here and here, as part of our Listening To Patients series.)

Podcast Friday: Storytelling As Patient Therapy; ‘Better Care, Cheaper’ Experiment

Our podcast this week features an interview with Dr. Annie Brewster, a Boston internist who became interested in storytelling as a kind of therapy for patients, and a Massachusetts General Hospital program that saves money while also giving better care to chronically ill older patients.

  • A recent study published in The New York Times found that patients listening to other patients telling their own stories can be therapeutic. We spoke to Annie Brewster, a doctor living with multiple sclerosis, about her project documenting the lives of patients and their families in the midst of serious illness.
  • (Check out Dr. Brewster’s “Listening Project,” here, here and here.)

  • Is Better Care Cheaper? Older patients with multiple chronic diseases are the biggest consumers of health care. We explore how the next phase of Gov. Deval Patrick’s health care plan aims to cut this cost down, and hear one doctor’s perspective about whether it will actually work.

When An Eating Disorder Takes Over A Teenager’s Life

Because so many women in this country are obsessed with their weight, and carry around a sad sense that their bodies are never good enough (bolstered by social pressure and the proliferation of unrealistic images of beauty) stories about eating disorders resonate profoundly. The crazy drumbeat of “thinner is better” is so very familiar to most of us, it’s the soundtrack we live with: “If I just lost 10 or 20 or 30 pounds, my life would fall into place — I would finally be in control.” But for some, that low-level fixation grows and grows, until it takes over, crossing a line into illness and true despair.

Dr. Annie Brewster notes that about 10 million people in the U.S. have an eating disorder, according to the National Institutes of Health, and 90% are women. Approximately 4.5% of all American high school students reported in a recent survey that they’d vomited or used laxatives as a means to lose weight in the past 30 days, and approximately 4% of college-aged females have bulimia. According to the 2007 Youth Risk Behavior Survey, 35% of adolescent girls believed they were overweight, 60% were trying to lose weight. The vast majority of eating disorders go untreated.

But the numbers don’t get at the atrocity of what an eating disorder involves. For our Listening to Patients series, Dr. Brewster, a Boston internist, recently conducted and edited an interview with Elizabeth, a 19 year-old college student with bulimia. “To fully grasp that terror of an eating disorder would take much more than an hour long interview,” Elizabeth said. “The struggle for perfection is destructive and unbearable. Not only is this goal an impossible one, but the process is crippling and fatal. An eating disorder needs you to feel imperfect, unworthy, ugly, fat, disgusting, wrong, horrible. It strips you of your health, your self worth, your life, your soul. It blames you for everything that goes wrong and berates you if you can’t fix it. You do not need to fix everything. It is not your fault. You don’t need to be perfect. You just need to be the best you can be and not be afraid of who you are. That is true beauty.”

Here, Elizabeth speaks openly about her bulimia, which started in childhood as an internal battle over control, self-identity and growing up. As her weight fluctuated, she describes the desperate journey from eating food out of the garbage, throwing up several times a day and punishing 4-hour daily stints at the gym, to her recent, still-fragile emergence into a kind of peace with her own body and her self.

Listening To Patients: Farewell To A Doctor Of The Greatest Generation

Charles Marcel Poser upon his induction into the Royal Society of Medicine in Edinburgh

“He showed the way forward. He lightened the burden of a terrible disease. He made it possible for me to live with loss and the chronic illness of my beloved sisters. And he did this all by example—never by instruction, never by giving advice, never by telling me what to do or think. He did it simply by being who he was……a man who had seen the very worst of what life in the twentieth century had to offer but who nonetheless never lost his zest for experience and his joie de vivre.”

Charles Marcel Poser, 86, a neurologist world-renowned for his expertise in multiple sclerosis, died late last year at his home in Boston after a long illness. At his memorial service this month, the historian Ellen Fitzpatrick (author most recently of “Letters to Jackie: Condolences from a Grieving Nation”) spoke about Poser’s extraordinary gifts as both a physician treating her two sisters with MS and as a human being. Her remarks capture how a doctor can heal and sustain not only patients, but their families. She kindly shares them below, and adds this biographical note:

Born in Antwerp to a family of diamond merchants, Charles Poser escaped Nazi-occupied Belgium with his family and settled in New York City. He enlisted in the U.S. Army, serving in a military intelligence unit and later with the 11th armored division. He was at Bastogne, the famed Battle of the Bulge, and the liberation of  the Mauthausen Concentration Camp in Austria. After earning a medical degree from Columbia University, he began a long and illustrious career that included administrative, clinical and teaching positions at the University of Vermont, Boston University, the Veterans Administration, and Beth Israel Deaconess Medical Center.  The author of hundreds of scientific articles and several influential books, Poser published the first definitive system for measuring and describing MS. The “Poser Criteria” were quickly adopted worldwide, withstood the test of time for many decades, and only now are being superseded by newer criteria based on improved imaging technology. He received numerous academic honors worldwide, including the Order of King Leopold from his native Belgium.

I’m honored to have the opportunity to share a few memories of Charles and to speak as a friend, a family member of two of his patients, and by extension, for those two patients who cannot be here today. We were all privileged to know Charles, who shaped our lives in so many profound and lasting ways.

I  met Charles Poser in 1989,  not long after my sister Betsy was diagnosed with multiple sclerosis. I was then a beleaguered young assistant professor at Harvard and one of the upsides of the job were the many wonderful people I met at the university. One was a neurologist – Bruce Price – who recommended Dr. Poser to me as the best person to consult on my sister’s condition. I still recall Bruce’s description of Charles: “He is a world renowned expert on multiple sclerosis, with the manner of a country doctor.” In retrospect, I’m not sure what country Bruce was referring to! For the Charles Poser I came to know was a Renaissance man of remarkable experience and refinement  – European in so many ways – but also thoroughly American in his sensibilities.

I can remember to this very day the first time I saw Charles.  I had secured an appointment with him for my sister and on the day of that initial visit, we sat in a clinic waiting room at Beth Israel watching doctors come and go. As they appeared, carrying charts, their white coats flying, I couldn’t help but wish that some would be this august Dr. Poser and that others would not be. When Charles called out my sister’s name, I felt right then and there an immediate sense of relief.  His look of authority, and businesslike tone were offset by his crisp blue Oxford shirt, his khakis, rep tie and best of all LL Bean moccasins. THAT was country!

As the three of us sat down that day in the examining room, Charles took a careful history, did a thorough exam,  and reviewed the available tests and scans. His wide knowledge and vast experience with demyelinating disease was more than evident, of course. But it was the dry sense of humor, the wit, the twinkle in his eye, his searching intellect, the ready skepticism, his evident concern and his focus on the way forward that won us over instantly. Those qualities meant as much to my sister and to me at that moment as his reputation and expertise. And as the years unfolded, they really meant everything. Continue reading

Chemotherapy For Life: One Woman’s Story

Marie Pechet and her son, Aidan

Marie Pechet lives in Cambridge and has written about her cancer previously for CommonHealth. In this piece, part of our Listening To Patients series, she grapples with the reality of being on chemotherapy for the rest of her life.


At age 15, I was working as a cashier at our family’s small grocery store in a sketchy neighborhood.
Just before closing time one day, after I totaled a customer’s sale and the cash drawer sprung open, a gunman appeared. He aimed his gun at my stomach and grabbed frantically at the cash.

My initial reaction was to push the cash drawer closed; his reaction was to push the gun more firmly into my stomach.

In that moment I realized, “He has a gun. This is real. This is happening.”

Time slowed, and I took in the details of everything around me: The exact number of large bills he was grabbing, the faces of the customers, the sound of my father’s voice as he approached the robber with a butcher knife. And then, it was over.

I wasn’t scared, but I was shaken and oddly alive with adrenaline. I was held up, and I survived! It felt like an adventure.

Years later, I heard the words, “You have cancer.” More than one time. Each time, it felt like standing in front of a loaded gun. I initially felt like this can’t be real, then realized I had an underlying threat to my life. I wasn’t sure whether or when the bullet would fire, and I wasn’t sure what I could do about it. So, I tried to pay attention, do what I was told, and each time, survived. And each time, the survival was exhilarating and empowering in its own way.

Stage IV Colorectal Cancer

The most recent diagnosis came last January. Continue reading