Patient Stories

Organ transplantation may be the most intense journey that a family ever experiences, complete with daunting challenges and the joys of triumph. On the Facebook site of the Center for Liver Disease and Transplantation, many organ donors and recipients have shared the stories of their struggles so that others will know what to expect and that they are not alone.

One such story is that of Kevin Martinsen, who received a living donor liver from his brother Daniel. Read how Kevin and Daniel share their moving stories in their own words.

So Many Roads, Ease My Soul: A Story of Living-Liver Transplantation

Kevin Martinsen

Kevin Martinsen

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Stamford CT woman gives husband the gift of life

by Columbia Surgery on January 17, 2012

When Brad Shwidock needed a liver transplant due to primary sclerosing cholangitis, his wife, Carol, was not only eager to donate, but was a good match. The successful living donor transplantation took place at NewYork-Presbyterian/Columbia September 13, 2011.

Living donor liver transplantation is considered one of the most important advances in the treatment of severe liver disease. By improving access to transplantation, living donor transplantation significantly reduces patients’ risk of dying while on the organ donation waitlist. At the Living Donor Liver Transplant program at New York Presbyterian Hospital, which is one of the largest living donor liver programs in North America, approximately 15-20% of the center’s transplant patients currently receive a liver from a living donor.

Read the Shwidock’s story as reported by the couple’s local paper, The Hour Online.
Learn more about living donor liver transplantation at livermd.org or by calling 1.877.LIVERMD (1.877.548.3763).

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Pamela Abma has come a long way since she spent several weeks hospitalized at NewYork-Presbyterian Hospital/Columbia University Medical Center last year, barely clinging to life. Just as June of 2010 began, she suddenly developed acute respiratory distress syndrome (ARDS) as a result of an unusually violent reaction to a form of malaria that she had caught while performing missionary work in Uganda. Her reaction was so severe that she might not have survived were it not for the extracorporeal membrane oxygenation technology (ECMO) provided by Daniel Brodie, MD, Director of the Medical ECMO Program, and Matthew Bacchetta, MD, MBA, MA, Director of the Adult ECMO Program. Thanks to ECMO, she made a miraculous recovery, and was out of the hospital in mid-July.

Pamela Abma at MS Bike-a-Thon

Pamela Abma at MS Bike-a-Thon

Her recovery was by no means complete when she left the hospital, however. She had lost twenty pounds while on ECMO, and was extremely weak; she could barely walk around. She desperately needed to put on the muscle mass she had lost. Choosing to forgo rehabilitation, she hired a personal trainer, and began her recovery by using weights in her swimming pool. Before long, she was spending the hot summer days swimming laps. Her strength gradually returned, and she was thrilled to be able to attend her son’s wedding in August.

As winter set in, Pamela’s daughter, Joy Abma, suggested that she make it a goal to participate in the following year’s Bike MS, a bike-a-thon put on by the National Multiple Sclerosis Society. Pamela’s niece had recently been diagnosed with MS, so the biking event seemed like an excellent way to support the fight against MS while also forcing Pamela to get in shape. She began to take spinning classes in preparation for the 50-mile ride, which she knew would be more strenuous, physically, than anything she had done in her life.

When winter was past and it warmed up again, Pamela took to the streets, biking regularly. That summer, Pamela and her family decided to commemorate the anniversary of her illness by reading aloud from a journal that Joy had kept throughout the time Pamela was on ECMO. Every day for those six weeks, Pamela would re-experience her illness through the eyes of her daughter, reading the passage written on that day the year before: “today, the doctors said you might not survive”; “today, you opened your eyes for the first time”; and so on. Until then, Pamela hadn’t been able to bring herself to read through Joy’s incredible journal in its entirety; finally doing so helped her understand exactly why her family calls her “the miracle girl.”

The next fall, the big day finally arrived: on October 3rd, 2011, Pamela joined her daughter and her sister-in-law in a ride that began at the Lincoln Tunnel and ended by the piers near the George Washington Bridge. She recalls pausing on the bridge itself, to reminisce: while she had been on ECMO, her hospital room had had a view of the George Washington bridge; she couldn’t see it herself from her position lying in the bed, but her guests remember it vividly. The cyclists decided to bike down to NewYork-Presbyterian Hospital/Columbia Medical Center itself, where Joy took the picture seen here of Pamela in front of the giant banner. Needless to say, Pamela’s recovery has been an incredible success — and the family is already talking about participating in a three-day bike-a-thon next year, in order to raise money for the fight against malaria.

Related Link:
ECMO Saves Life of NJ Missionary with Acute Respiratory Distress Syndrome

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Tim Sweeney’s Story

by Columbia Surgery on November 28, 2011

At age 31, cystic fibrosis patient Timothy Sweeney needed a double lung transplant. Less than one year later, he ran the New York City Marathon with his transplant surgeon, Joshua Sonett, MD.

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Stories of Hope: Alexander Vasquez

by Columbia Surgery on November 16, 2011

For as long as he could remember, Alexander Vasquez struggled with his weight. His weight rose with the years — 100 pounds in kindergarten, 400 pounds by 9th grade. That trend was briefly reversed each summer, when he spent several months in the Dominican Republic playing outdoors with friends and relatives, only to resume again each fall once he returned to school in New York. He endured the hurtful comments of his peers until he dropped out of high school in his junior year, when he no longer fit into the school’s single chair and desk units.

Alex began the process of researching options for weight loss surgery in his early 20′s. First he tried to arrange for weight loss surgery at St. Luke’s Hospital, but his weight exceeded the hospital’s maximum limit. He tried to lose enough weight to qualify for surgery, but failed. The next year, he went through the same process at Montefiore Hospital, and again, was told he was ineligible for surgery because he was too heavy. He requested surgery at Beth Israel Hospital, and tried losing weight on his own with the help of shedweight.com, to no avail. After these disappointments, Alex said he just stopped trying, and his weight rose to almost 600 pounds. For the next few years, Alex felt resigned to being big forever.

In many respects, thing were going fairly well; Alex was working in a bindery, had a girlfriend, and did not have any other major health issues. But underneath the cheerful facade he portrayed to the world, Alex felt shame and discouragement about his weight. He started having back problems and his knee gave out several times, causing him to fall. Shopping for clothes, he recalls, was impossible in regular stores – the only options were very expensive specialty stores. His fatigue worsened, and he no longer had the strength to keep working. Then one day, he went to drive somewhere with his girlfriend and could not fit behind the steering wheel. He broke down in tears. Admitting that being obese was holding him back in life, Alex made a momentous decision: he did not want to become “a couch person,” as he calls it. “I wanted to grow up and be able to live life.”

With renewed determination, Alex contacted NewYork-Presbyterian/Columbia, where he had been born. The Center for Weight Loss Surgery would be able to do his surgery, he was told. Alex soon began pre-surgical evaluations, educational seminars, and monthly weight-ins at Columbia, and later at the Lawrence Hospital, a Columbia affiliate that was closer to home. And to hear Alex tell it, he couldn’t be any happier. “I love Lawrence Hospital – I love everything about it, from the parking attendants to the security guard to all the nurses and doctors on my team. They are fantastic.”

Since his surgery June 7, 2011, Alex has lost over 160 pounds and is ecstatic. He is well on his way to achieving his goal of a healthy weight (between 215 and 230 pounds for his 6’2” frame) by June of 2013. What’s more, his success has inspired him to reach out to others struggling with their weight: he has been posting a series of videos on YouTube in order to let others know that if they are obese, they can change their lives too. “Before my surgery, I was in denial about my weight. I acted like a regular person, but I didn’t look or act like a regular person because I was so big. Now, I want to encourage others like me to seek help, and for those who have surgery, I want to help them by letting them know what they can expect during this process. I’m open about everything because I hope every obese person will choose to come out of denial and find help.”

On the recommendation of his physicians, Alex chose sleeve gastrectomy, a procedure that decreases the size of the stomach helping patients to feel full after eating smaller amounts of food than before surgery. Patients undergoing this procedure can expect to achieve significant weight loss, comparable to the results achieved by gastric bypass surgery, but in a less complicated manner. Alex’s surgeon, Aaron Roth, MD, FACS, says “Alex is one of the most motivated patients in our practice. Like all weight loss operations, the sleeve procedure is a tool to help patients control their weight. It is perfectly suited for patients like Alex who are at very high risk for surgery, one that best balances risk and opportunity for success.”

The Columbia University Center for Obesity Surgery at Lawrence Hospital has been treating patients since 2003. The program offers the convenience and atmosphere of a smaller community hospital in combination with the world-class clinical expertise and research capability found at New York-Presbyterian Hospital. According to Jane Alexander, NP and Clinical Coordinator of the weight loss surgery program, being a part of Columbia University establishes a link with the main hospital to deliver care that other programs cannot. “We offer patients a personalized approach that takes into consideration their physical health, family, and emotional concerns. Being a community hospital, we’re more available and accessible to our patients, enabling us to create a bond and partnership with them. It is extremely rewarding to work with patients like Alex and see the results of hard work and dedication.” Dr. Roth “All patients with or without high risk are are welcome in our practice and are encouraged to come and discuss surgical options with us.”

To learn more about weight loss surgery at the Lawrence Hospital Center, visit the Center for Advanced Surgery or call 914.787.4000.

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When Megan Ellerd and Steven Ferretti met seven years ago, it was “instant love,” she says. Not long after, the young couple found out that Steven had autoimmune hepatitis — but they didn’t worry too much about it, hoping that it wouldn’t affect them until much later in life. In 2008, however, the two were happily engaged when Steven’s condition suddenly took a turn for the worse. His liver was failing, and he needed a transplant.

Although Steven had severe liver disease and was experiencing painful symptoms such as ascites (fluid buildup in the abdomen), he would have had to become deathly ill in order to qualify for a donor organ from the transplant waiting list. For a couple with a wedding to plan and a bright future ahead, the prospect of Steven spending many months, if not years, in progressively worsening health was just not an option. For Megan, the choice was clear. She had known from the beginning that she would donate part of her liver to him if she could — and when testing confirmed she was a good match, that’s exactly what she did.

Megan Ellerd and Steven Ferretti

Steven Ferretti and Megan Ellerd

On January 6, 2011, the team at the NewYork-Presbyterian/Columbia Liver Transplant Program transplanted Megan’s left lobe to Steven, an operation that not only saved his life, but spared him the ordeal of becoming even sicker while waiting for a liver from the organ donor waitlist. Benjamin Samstein, MD, Surgical Director of the Liver Transplant Program, and Lorna Dove, MD, MPH, Medical Director of Adult Liver Transplantation, are happy to report that the transplantation was a success, and that Steven and Megan have both made excellent recoveries.

Both Steven and Megan have been transformed by the experience; they speak of their gratitude for the support they received from their loving families, and of a newfound appreciation for life. Thanks to the team at Columbia, and to each other, they’re now thinking of having kids and possibly starting a new business. Whatever they decide, they’re fortunate to be able to do it in good health, and together.

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On first glance, the story may appear cliché; a spouse dies, and the surviving spouse gives to a charitable cause, hoping to confer some measure of permanence to his or her loved one’s memory. Repeated in infinite variations, the uplifting closure softens just a little bit of the survivors’ sadness and pain, and makes a small contribution that lasts a little while before fading.

This time, the story is a bit different. This time, the legacy started by one grieving spouse is fueling research that is already saving lives, and that may be the most important work in pancreatic cancer in the last 40 years, experts say.

Muzzi Mirza was a 46-year-old husband, father of three, and a partner in a private equity firm when he learned he had stage 4 pancreatic cancer in 2005. His diagnosis shattered what his wife, Sue Mirza, called “the perfect life” they were then living in Greenwich, CT. Muzzi began treatment, which included chemotherapy at New York Hospital and consultations at NewYork-Presbyterian Hospital/Columbia University Medical Center. Although Dr. John Chabot and Dr. Robert Fine worked with Muzzi to determine his optimal treatment plans based on their research at NYP/Columbia, there was no structure in place at the time to coordinate patient care in tandem. Instead, Muzzi and other patients had to travel to multiple physicians’ offices for different parts of their care – a burden made even more onerous by their serious illness. According to Sue, “It was clear to Muzzi that this was not the way it should be done.”

Sue Mirza, Dr. John Chabot, Francine Castillo

From L to R: Sue Mirza, Dr. John Chabot, Francine Castillo

Indeed, Dr. Chabot was already laying the groundwork for a comprehensive center dedicated to research and treatment of pancreatic cancer, and had begun discussions about establishing and funding the new Pancreas Center at NewYork-Presbyterian/Columbia.

Meanwhile, not only did Muzzi want to improve the way he and other patients received daily care for their disease, but he also wanted to spare other families the same devastation of receiving a pancreatic cancer diagnosis at such a late, largely untreatable stage. He talked with Drs. Chabot and Fine in depth, and he learned about the work Dr. Harold Frucht was conducting regarding genetic causes of pancreatic cancer and methods for early detection.

It became clear that although a cure might be years away, the possibility of early detection and prevention likely held the best promise for successfully reducing mortality from pancreatic cancer in the near term, explains Sue. With his keen business acumen, Muzzi could see that with the right resources, physicians who were working in parallel could together accomplish even more, both in their research and also in optimally treating their patients. “Muzzi could see that the Pancreas Center was a blueprint waiting to happen,” Sue says. “There was a very timely collision of two forces – Dr. Chabot’s in the medical world, and Muzzi’s with his business and fundraising experience.”

His vision and commitment firm, Muzzi pledged one million dollars to the establishment of a program within the new Pancreas Center that would focus specifically on prevention and early detection of pancreatic cancer. His business associates in the Odyssey Partners matched that pledge with another million, and matching funds from a wider circle soon brought the total to about four million, which launched the first five years of the Muzzi Mirza Pancreatic Cancer Prevention & Genetics Program.

In addition, Sue and members of the Odyssey Partners, plus others in the Muzzis’ circle, began the tradition of the fall golf event, an invitational outing held in CT both to celebrate Muzzi’s life and also to raise additional funding for the program. This year’s event on September 19, 2011 brought the total raised to over $400,000 in the five years the event has been held.

With that generous backing, the Muzzi Mirza Pancreatic Cancer Prevention & Genetics Program has coalesced into a dynamic program within the Pancreas Center for the prevention and detection of pancreatic cancer – the first such effort of its kind. Led by Harold Frucht, MD, the program’s comprehensive clinical practice is integrated with a robust research program focused on early detection and prevention. Unique in this country, the program not only pioneers some of the most promising and unique research in pancreatic cancer today, but it quickly translates these research findings to clinical therapies for patients at the center.

At this time, Dr. Frucht and other researchers in the Mirza Program are conducting cutting-edge studies including a trial of stool DNA testing, which shows promise as the first noninvasive test to detect pancreatic abnormalities at a very early stage. Early results are very promising, with tests for DNA mutations in stool samples showing high levels of sensitivity in identifying precancerous lesions such as IPMN (intraductal papillary mucinous neoplasm). If further testing bears out this simple method, fecal testing has the potential to become a routine, standard screening method akin to mammography, and would represent an unprecedented improvement in our ability to detect and treat pancreatic cancer. As Sue puts it, “If the test could be developed into something internists used routinely to screen for pancreatic cancer, that would be the ‘home run’ in fighting pancreatic cancer.”

The Mirza Program maintains a registry and tissue bank for individuals at high risk; this invaluable infrastructure facilitates ongoing clinical, basic, and translational research that would not be possible without the availability of sufficient tissue samples, clinical data, and family and epidemiologic information. In addition to the study of stool DNA testing, the tissue bank supports numerous other studies, such as one on a new vaccine for pancreatic cancer. A newly opened trial, led by M. Wasif Saif, MD, is investigating whether a new vaccine, developed specifically to target pancreatic cancer cells, will help to prevent recurrences among patients who have had pancreatic tumors surgically removed.

Yet another important trial, led by Kenneth Olive, PhD, is evaluating the use of a therapy that could extend survival among patients with metastatic pancreatic cancer. This agent, called IPI-926, inhibits the ability of tumors to build protective walls around themselves, which act as barriers to chemotherapy. Inhibiting this process could allow therapies to work far more effectively, and because of its potential, IPI 926 is currently under study as an approach to numerous types of cancer.

These are just a few of the innovations currently underway at the Pancreas Center and the Mirza Program (for more, see the Pancreas Center’s web site and the Department of Surgery blog). Together, these efforts are making inroads into a disease that has remained almost uniformly fatal for the last 40 years. As they have done each year at the fall golf tournament, Drs. Chabot and Frucht have shared stories about how the program has helped to detect patients’ cancers earlier and to save their lives. According to Sue Mirza, those who contributed to the establishment of the Muzzi Mirza program are extremely pleased that they can already see tangible results in such a short time. “My husband firmly believed that supporting research efforts would pay off and help to lower the mortality rate of this disease,” says Sue. “I am thrilled that following through on his wishes is proving to be successful.”

Related Links:
Promising Pancreatic Cancer Trial (IPI-926) Enrolling Patients at Columbia
Pancreatic Cancer Vaccine Trial Opens at NYP/Columbia’s Pancreas Center

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On March 20, 2010, Chris Costa, a 26-year-old paramedic in Connecticut, was taking a quick ride on his motorcycle when he was sideswiped by a truck. He sustained serious trauma, including seven broken ribs and a broken right femur, and was rushed to St. Vincent’s Medical Center in Bridgeport. While there, he developed acute respiratory distress syndrome, or ARDS, a condition in which the lungs fill with fluid. He was put on a mechanical ventilator, to no avail; his lungs stopped working, and his kidneys soon followed. Recognizing that Chris’s life was in danger, his cardiothoracic surgeon, Dr. Albert Dimeo, called Daniel Brodie, MD, Director of the Medical ECMO Program at NewYork-Presbyterian Hospital/Columbia University Medical Center, and asked that Chris be put on ECMO.

ECMO stands for extracorporeal membrane oxygenation. When human lungs are functioning normally, they add oxygen to the blood and remove carbon dioxide from it. But when they are failing, as in Chris’s case, ECMO can perform this vital function for them. The patient’s blood is run out of the body, through the ECMO machine, and back in, through a system of tubes; the ECMO machine essentially serves as a set of out-of-body lungs, continually oxygenating the blood. Because this advanced technique allows the patient’s lungs to rest, it avoids causing the damage and complications associated with other techniques, such as mechanical ventilation. According to Dr. Brodie, “It is a technique with the potential to save many lives.”

On March 24, four days after the accident, NYP/Columbia rushed their mobile ECMO Transport Team to St. Vincent’s, where Matthew Bacchetta, MD, MBA, MA, Director of the Adult ECMO program, and his team put Chris on ECMO. He was then transferred to NewYork-Presbyterian/Columbia University Medical Center (via police escort — he also worked for the Fairfield police at the time), where Dr. Brodie, Dr. Bacchetta, and the rest of the ECMO team continued to provide and monitor Chris’s ECMO support.

Sarah and Chris Costa at their wedding, May 14, 2011

Sarah and Chris Costa at their wedding, May 14, 2011

Chris’s condition gradually improved; when he regained consciousness about two weeks later, although still breathing through a hole in his neck know as a tracheostomy, he was already cracking jokes. His family and girlfriend of five months (Sarah, a Connecticut policewoman with the Bridgeport police) were there with him. He could hardly speak, however, due to the tracheostomy. It was so difficult to talk, in fact, that his mother had brought him a whiteboard so that he could avoid the effort of speaking.

One day, still in the ICU with his tracheostomy, Chris sent Sarah a text message as she was out getting dinner with a friend — asking her for her hand in marriage. She dropped her food, ran back to the ICU, and accepted his proposal. It was the first engagement the Columbia ICU had ever seen.

Several weeks later, as his recovery continued, Chris devoted an afternoon with his occupational therapist to mastering the difficult task of climbing out of bed, getting down on one knee, and climbing back into bed. That evening, Sarah came to visit him in his hospital room. Chris asked her to close the door. She walked to the door saying “shouldn’t you do this by yourself,” and when she turned around, she found him kneeling before her, presenting a wedding ring — their formal proposal.

After about two and a half months, Chris and Sarah left the hospital and went home. Chris has made a full recovery, and the two are even riding again. But as Dr. Brodie warns, the happy outcome might have been different if St. Vincent’s Medical Center hadn’t provided such outstanding initial care and if Dr. Dimeo hadn’t thought to call upon the NYP/Columbia team to put Chris on ECMO as soon as he did. “ECMO is proving to be valuable therapy in the most severe cases of ARDS,” he says. Drs. Brodie and Bacchetta hope that stories like Chris’s will help spread the word about ECMO, and the lives it has the potential to save.

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Sharsheret: Serving Jewish Women with Breast Cancer

by Columbia Surgery on October 18, 2011

Sheldon Feldman, MD

Sheldon Feldman, MD

It has been a great pleasure and distinct honor to be involved with Sharsheret for the past decade. I care for a large number of young orthodox Jewish women with breast cancer. In the pre-Sharsharet era, many of my patients felt very isolated and frightened without being able to connect with “experienced” patients who had already walked in their shoes. It seemed a paradox for me that is spite of their deep faith and dedication to Judaism, many women were unable to receive support from their community due to issues of stigmatization and concerns about confidentiality. There was a great deal of misinformation and lack of understanding, particularly relating to the Askenazi “Jewish” breast cancer gene.

With the birth of Sharsharet, I was able to witness first-hand the enormous culturally sensitive support that my new patients could receive. They now can be fully supported by peers and receive medically correct information in a caring way. I have been pleased to be a member of the Sharsharet Medical Advisory Board since 2003. I am firmly committed to helping expand the work and scope of this wonderful organization so as many patients as possible can be helped.

Sheldon Feldman, MD, Chief, Breast Surgery Section at NewYork-Presbyterian/Columbia

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On September 21, 2008, 27-year old ML started feeling short of breath. It quickly got worse; she began to feel dizzy and started sweating profusely. Her family called an ambulance and she was rushed to NewYork Presbyterian’s Allen Hospital, where her condition deteriorated. Mysteriously, her lungs were filling with blood, and she couldn’t get enough oxygen to survive – even on a ventilator. The doctors at the Allen Hospital called their counterparts at the NewYork-Presbyterian/Columbia University Medical Center to see if she could be transferred. However, she was too sick to make the two and a half mile trip by ambulance. She would need to be transferred on a device called ECMO to keep her alive – something the ECMO team had been preparing for. But ECMO traditionally requires blood thinners and could worsen her bleeding. The risk would be high. Finally, when lack of oxygen caused ML to have a cardiac arrest, the ECMO team felt that she needed to be transferred. Her family decided to take the risk.

ML flatlined again during the ambulance ride, but she did not die. She made it safely to NYP/Columbia because of the advanced procedure known as ECMO, or extracorporeal membrane oxygenation – a process that takes over the function of the lungs. A patient’s blood is run out of his or her body and through the ECMO machine, which oxygenates the blood, and is then sent back into the body. The machine serves essentially as a set of mechanical lungs, supplementing the patient’s failing lungs. It also allows the lungs to rest and recover because it is less damaging than the mechanical ventilator, which forces the patient’s lungs to breathe and often harms them in the process.

When ML was put on ECMO in 2008, using full dose blood thinners was the standard of care and that could make her worse. But the ECMO team and her attending physician in the Medical ICU, Dr. Jennifer Cunningham recognized that ML was just barely clinging to life; keeping her on ECMO was her only chance for survival. So, ML was kept on ECMO with a minimum of blood thinning for a full 13 days — and, against all odds, she recovered. Dr. Cunningham called it “miraculous.”

It was from their experience with ML that Dr. Matthew Bacchetta, Director of the Adult ECMO Program, and Dr. Daniel Brodie, Director of the Medical ECMO Program, helped lead the field in decreasing the amount of blood thinning used in ECMO, thereby drastically reducing the risk of bleeding while on ECMO.

During ML’s illness, it was learned that her lung failure was caused by an illicit cosmetic injection to her buttocks gone awry. The silicone from the injection migrated into her bloodstream and found its way to her lungs, where it caused severe bleeding and nearly killed her. Having survived this near-fatal episode, ML now urges women around the world to avoid cosmetic injections performed by unqualified, unlicensed practitioners, because as her story attests, they can have serious, if not deadly consequences.

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