Athlete Finds a Team to Help Her Beat Multiple Sclerosis

“Ten years ago I thought my life was over. I did not think I could find the right partner or even have children. Being a part of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai has helped me and my family so much.” — Jessica March

In 2009, when Jessica March was 29 years old, she began experiencing tingling in her toes and blurry vision.  She was an athlete, and thought she was training too much for a 100-mile bike ride.

“You find all these excuses,” she said. “I remember waking up one morning, I opened my eyes, and I was completely paralyzed.”  Mrs. March was terrified.  “I felt like my body was in a straitjacket,” she said.  She panicked and was screaming while pulling herself along the ground.  “I didn’t know what was wrong with me, I was crying for days,” she said.

The first doctor she saw was a general neurologist who told her she had fibromyalgia.  However, when she got her test results from the hospital, she started doing her own research and suspected multiple sclerosis (MS), a condition she had never heard of prior.

Jessica found a specialist for multiple sclerosis who started treating her for MS. This specialist referred her to Stephen Krieger, MD, Professor of Neurology, at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai.  “It’s been over 10 years, and I have never looked back,” she said.

Her diagnosis and treatment started with an MRI and medications.  But with Dr. Krieger and the Corinne Goldsmith Dickinson Center, her treatment also emphasized the overall wellness of her life and how to thrive while living with this condition.

“He introduced me to the MS support group, and I was exposed to studies and data showing that people with MS can thrive,” Mrs. March said.  In addition to her medications, her treatment includes nutrition, exercise, stress management, and mental health.

“Working with this team, I feel more confident talking to others and helping them,” she said. “I started in this dark place. Ten years ago I thought my life was over.  I did not think I could find the right partner or even have children.  Being a part of the MS Center has helped me and my family so much.” She is married and has two children.

Why should patients with multiple sclerosis choose Mount Sinai?  “This faculty is the best in the world for researching and treating MS,” said Mrs. March, who credits Dr. Krieger, clinical neuropsychologist James Sumowski, PhD, and Ilana Katz-Sand, MD, along with the nurses and fellows, and the entire office staff at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai.

“Their life mission is to support patients and caregivers,” she says. “It’s not just about a prescription on a prescription pad, it’s about your whole life. This group really cares.”

Saving Baby Nathaniel: As the Nation Went Into Lockdown Mount Sinai’s Liver Transplant Team Went Into Overdrive

Image of jaundiced 6-month-old Nathaniel in hospital prior to transplant

Prior to his transplant surgery, Nathaniel Capelo was severely jaundiced. He required continuous blood transfusions and his belly had to be drained of fluid every other day.

On March 18, 2020, the anguished parents of 6-month-old Nathaniel Capelo sat in his hospital room at The Mount Sinai Hospital facing the grim reality that he would die within days if he did not receive a new liver. One week earlier, the COVID-19 pandemic had begun to grip the nation and widespread lockdowns were taking place. But at 10:30 that night, the couple received a phone call from Mount Sinai’s transplant team that offered tiny Nathaniel a potential lifeline: the family of a shooting victim in his early 20s, who had just died in another state, were willing to donate his liver—epitomizing the “good news/bad news” world of organ transplants.

At the time, operating rooms throughout New York City were being converted into intensive care units to house severely ill patients with COVID-19 who were beginning to strain the city’s health care system, and many hospitals had started suspending their transplant procedures altogether. The hospital where the donor had died told Mount Sinai’s Recanati/Miller Transplantation Institute that its surgeon Chiara Rocha, MD, and her team would have to bring their own personal protective equipment to wear while extracting and retrieving the donated liver to bring back to New York. Charter airline companies were shutting down flights and Mount Sinai’s administrators worked their magic in securing a Learjet to fly Dr. Rocha and her team hundreds of miles to and from the donor hospital in the middle of the night.

“The stars lined up,” says Sander S. Florman, MD, Director of the Recanati/Miller Transplantation Institute. “This was as logistically complicated as anything we have ever done and in a child where everything was stacked against him.”

To this day, Nathaniel’s doctors do not know what caused his rapid liver failure. But now, the inquisitive 20-month-old toddler “is going to do great,” says Dr. Florman. Three-quarters of the liver he received was transplanted into an adult patient at Mount Sinai, who is also doing well.

Members of Mount Sinai’s Liver Transplant team include, from left: Antonios Arvelakis, MD, Associate Professor of Surgery; Marcelo E. Facciuto, MD; Sander S. Florman, MD; and Chiara Rocha, MD.

The liver is the only organ in the body that can regenerate and grow. “But what most people don’t know is that if the liver is too big for the body it can shrink down,” says Dr. Florman. This is significant because at the time of his transplant surgery Nathaniel weighed only 11 pounds, representing “the extreme technical complexity” of what was possible, he adds.

Most children requiring a transplant would receive 20 percent of an adult liver—a size much too large for Nathaniel. Before the transplant could take place, Marcelo E. Facciuto, MD, Professor of Surgery at the Icahn School of Medicine at Mount Sinai, had to cut the donor liver down to the “smallest anatomic segment” possible, says Dr. Florman. But even that was too big. Following the seven-hour surgery led by Dr. Florman, the team left Nathaniel’s abdomen open for four days in order to shrink the liver to a size that was able to fit inside his tiny body.

After conducting more than 4,500 transplants during its 32-year history, Mount Sinai’s program has encountered a challenging surgery like Nathaniel’s only a dozen or so times, says Dr. Florman. “You’re talking about sewing an artery that’s just a couple of millimeters with sutures that are as fine as your hair. You are connecting the artery, the veins, and the bile duct, and it is all done with what we call a loop—glasses with a built-in microscope lens because it’s too small to complete with just your eyes.”

He adds, “Transplant is the epitome of a team sport and you can’t do this without having a tremendous team or without an institution that has unbelievable depth. Only a small number of transplant centers in the country would have been willing to take on a child this small. Even in the best of times this would have been a great triumph and a great case. This was even more so considering the time in which it happened.”

In fact, March 2020 marked the busiest month ever for Mount Sinai’s liver transplant program, which conducted 23 transplants, some of which were referrals from other programs that had just shut their doors.

Image of health 20-month-old Nathaniel among his toys

Today, at 20-months of age, Nathaniel is on track to hit all of his milestones. He is walking on his own, beginning to talk, and able to eat tiny pieces of solid food.

Nathaniel recently celebrated the one-year anniversary of his life-saving surgery, and his prognosis is good. Each month that goes by lowers the chances that his body will reject his transplanted liver. He has been weaned off of all but one of his 13 medications.

“Dr. Florman and his team were just amazing,” says Nathaniel’s father, Dennis Capelo. He and Nathaniel’s mother, Alexandra Ramos, remained at the hospital with their child during the five-month ordeal. Nothing could have prepared them for “the scariest time we ever had to deal with,” says Mr. Capelo, who has a 3-year-old son and 10-year-old daughter from a prior relationship.

He says, “We try to cherish every moment we have. We spend as much time as possible with all of the kids and each other and hope for the best.” He and Ms. Ramos have remained close to Nathaniel’s former Mount Sinai nurses and send them photos and videos to mark their toddler’s milestones, including his first steps. “They became like family to us,” Mr. Capelo says.

One of Nathaniel’s physicians, Ronen Arnon, MD, Professor of Pediatrics, Hepatology, and Liver Transplantation at the Icahn School of Medicine at Mount Sinai, remembers how “Nathaniel struggled to survive. The first months of his life were spent in a hospital bed rather than at home, and his first friends were his doctors and nurses. He suffered from eating and breathing difficulties and he could barely move due to his swollen abdomen.”

Another of his physicians was John Bucuvalas, MD, Chief of Pediatric Hepatology, Professor of Pediatrics, and Director of Solid Organ Transplant Outreach, Jack and Lucy Clark Department of Pediatrics, and Mount Sinai Kravis Children’s Hospital. “Today, Nathaniel is an active toddler and exploring his world. He won’t remember the transplant,” Dr. Bucuvalas says. “But for his parents, the Intensive Care Unit, P5 (Pediatric floor 5) teams, and the liver team, the series of events are etched in our memory and remind us of why we do what we do.”

Cancer Survivor, 86, Recovers from COVID-19 with Help from Mount Sinai’s Unique Hospitalization at Home Program

When Paul Levine, 86, began feeling sick, with chills, fever, and weakness, he feared his cancer might have returned, so he called his oncologist. After learning Mr. Levine had lost his sense of smell, a symptom of COVID-19, the doctor immediately sent him to the hospital, where he was diagnosed with the disease.

In the hospital, Mr. Levine felt miserable. He was put on oxygen and given infusions of fluids. He had trouble sleeping and didn’t feel like eating. He missed his wife, Sondra, who called several times a day, and he missed her cooking.

After about a week at Mount Sinai Beth Israel, he was able to return home to his East Village apartment to continue his recovery, thanks to a unique Mount Sinai program that offers hospital care in home settings.

Since 2014, Mount Sinai has offered some patients arriving at the hospital the option of getting the care they need at home under its Hospitalization at Home program. The program provides twice daily visits from nurses, a special digital tablet to communicate with the hospital, and the ability to receive all needed tests and exams, including IV infusions, ultrasounds, and supplemental oxygen.

Shortly after patients with COVID-19 began arriving at hospitals, Mount Sinai developed a new program, called Completing Hospitalization at Home, that allowed appropriate COVID-19 patients like Mr. Levine to be discharged to home to complete their recovery, while receiving all of the care they would normally receive in the hospital.

“I believe that the hospital at home program gave me the best of both worlds. I had hospital care with the home cooking that was most important in recovering the weight I had lost, along with my wife’s care and company,” says Mr. Levine, who lost about 18 pounds.

Almost three months after his initial diagnosis, Mr. Levine, a diabetic who recovered from treatment for a blood disorder called chronic lymphocytic leukemia (CLL) more than a decade ago, was doing much better. He still felt some shortness of breath, even with minimal exertion. But he’s thankful to be at home and to finally get his appetite back, especially for his wife’s homemade mushroom and barley soup.

Linda V. DeCherrie, MD, the program’s clinical director and a Professor in the Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai, said the program helps patients recover because they are more comfortable and find it easier to gradually return to normal activities, such as walking around and getting a cup of coffee. Studies show these patients have better outcomes.

“You are in your own bed, eating your own food, and enjoying the company of your loved ones,” said Dr. DeCherrie. “Being at home can help your recovery in many ways.”

First-Time Mother Receives Life-Saving Aortic Surgery

From left, Ismail El-Hamamsy, MD, PhD, Yulia Nurikyan, and Percy Boateng, MD.

A first-time mother received life-saving heart surgery at The Mount Sinai Hospital, thanks to her quick response to her symptoms and knowledge of her family’s health history, says a leader of her surgical team, Ismail El-Hamamsy, MD, PhD, Director of Aortic Surgery, Mount Sinai Health System, and first author of a recent paper on aortic dissection repair during the COVID-19 pandemic.

The patient, Yulia Nurikyan, was 38 weeks pregnant and had not been feeling well, with a backache that she thought was caused by her late-stage pregnancy. In mid-May, in the heat of the COVID-19 pandemic, she woke up at 5 am with a heavy feeling in her throat. She got out of bed for a glass of water, then fainted. Her husband, Antoan, quickly called 911, and an ambulance rushed her to Elmhurst Hospital in Queens.

Ms. Nurikyan told the medical team at Elmhurst that her father had died of an aortic dissection in his 40s, so they ordered a CT scan and other diagnostic tests, which showed that she had a bicuspid aortic valve. This was crucial information. About half of patients with this heart defect develop an aortic aneurysm, an enlargement of the vessel that can lead to aortic dissection. This is a tear in the inner layer of the aorta, the main blood vessel that brings oxygenated blood to the rest of the body. Some people with an aortic dissection feel no pain, but common symptoms are severe sudden pain in the upper back or chest, shortness of breath, and dizziness or fainting.

Ms. Nurikyan underwent an emergency C-section, delivering a baby girl, Livia. She held her daughter for a few minutes, then she was rushed to The Mount Sinai Hospital for emergency heart surgery, since the imaging tests suggested that her aorta was about to rupture, which could have proved fatal.

Yulia and Antoan Nurikyan with baby Livia.

“In cardiac surgery, this situation is at the top of the list of emergencies,” says Dr. El-Hamamsy, who treated Ms. Nurikyan as soon as she arrived. Dr. El-Hamamsy, senior faculty in Cardiovascular Surgery at the Icahn School of Medicine at Mount Sinai, is an expert in the repair of aortic dissection and recently published a study that found a significant decline in reported cases during the COVID-19 crisis.

In the study, published in May in the Journal of the American College of Cardiology, researchers compiled data on surgical repair of acute Type A aortic dissection in 11 New York City hospitals from January 1, 2018, to April 15, 2020, counting March 1, 2020, as the first day of the COVID-19 pandemic in the city. The study found that these surgical repairs fell 76 percent after the COVID-19 pandemic began—from 12.8 cases per month before the pandemic to 3 cases per month after the pandemic.

The investigators presented several potential reasons for the decline, suggesting, for example, that some aortic dissection patients did not call for help, fearing COVID-19 infection; or busy first responders were delayed in providing aid; or overburdened emergency departments may have missed or delayed diagnoses. The study said, “Although no causal relationship can be firmly established among the drop in type A aortic dissections, the COVID-19 outbreak in New York City, and the increase in at-home deaths since the last week of March 2020, this gives pause for thought.”

Ms. Nurikyan experienced a Type A aortic dissection. In a successful procedure, Dr. El Hamamsy repaired her bicuspid aortic valve, removing some of the injured blood vessel and replacing it with a synthetic graft, working with David H. Adams, MD, the Marie-Josée and Henry R. Kravis Professor and Chair of Cardiovascular Surgery at the Icahn School of Medicine at Mount Sinai, and the Cardiac Surgeon-in-Chief of the Mount Sinai Health System, and Percy Boateng, MD, Assistant Professor of Cardiovascular Surgery, Icahn School of Medicine at Mount Sinai.

Ms. Nurikyan’s baby, Livia, had remained at Elmhurst, placed in neonatal intensive care because of fluid in her lungs. Ms. Nurikyan and daughter spent a week at separate hospitals, and her husband could not visit either of them due to safety rules during the pandemic, though the hospitals kept them in touch through video calls. The family was happily reunited on May 23, when Ms. Nurikyan was picked up by her husband and they went together to get Livia. “My baby was the one who got me through it,” she said in an article on her care in the Daily News. She said she was grateful for her healthier heart and for the compassionate and expert care her new family received.

Ms. Nurikyan’s quick response to her symptoms was crucial, Dr. El-Hamamsy says, a point reinforced by the recent study. “It is critical, as we adjust to the pandemic, to balance the public health imperative of social distancing with the individual need to consult in the presence of sudden severe symptoms. Furthermore, additional resources, ranging from telemedicine to numbers of first responders, should be greatly increased,” the study concluded. “This serves as a word of caution for cities yet to experience a surge in COVID-19 cases, as well as for future similar events.”

Mount Sinai Queens Nurses Share Memories With COVID-19 Patients’ Survivors

From left: The Rev. Dr. Rachelle Zazzu, Chaplain; Melissa Farmer, RN; Stefanie Dimitriadis, RN; Amparo Sullivan, RN; Jonathan Nover, RN, MBA, Senior Director of Nursing for the Emergency Department; and Francelia Thomas, RN, Nurse Manager.

The nurses of Mount Sinai Queens are giving a precious gift to families of patients who succumbed to COVID-19 during the height of the pandemic—their memories of the patients’ last days.

In one letter, carefully hand-written on lined paper, Amparo Sullivan, RN, reached out to the family of a patient who had “a nice smile behind her oxygen mask” and had spent peaceful moments chatting and holding her hand. “This courageous woman wasn’t just thinking about herself but was deeply concerned about how the pandemic was affecting us,” Ms. Sullivan wrote. “Her bravery and thoughtfulness gave me inspiration.”

Since May, Mount Sinai Queens nurses have been writing such letters to family members, in a program that arose from their determination to console families and their own need to remember the patients they worked so hard to save. The hospital is now returning to normal operations. But in April and early May, Mount Sinai Queens was hard hit by the pandemic; visitors were not allowed at that time, out of an abundance of caution, to help protect patients and staff.

“Our nurses were caring for people as they died, and I was praying for people as they died, and no family was present. And it’s heartbreaking,” says the Rev. Dr. Rachelle Zazzu, MA, DDS, Staff Chaplain for Mount Sinai Queens. “So we have been writing letters to the families, fundamentally saying, ‘Your mother was not just patient No. 1234. We cared for her, and we saw beauty in her, and we want you to know that when she died, she was taken care of with a lot of care.’”

So far about a dozen letters have been written by nurses including Ms. Sullivan, Melissa Farmer, RN, Stefanie Dimitriadis, RN, and Tamara Boncic-Heins, RN. The program began with a suggestion from Ms. Sullivan, says Jonathan Nover, RN, MBA, Senior Director of Nursing for the Emergency Department (ED) at Mount Sinai Queens.

“It was a very emotional time for everyone in the ED. So what Ampy Sullivan envisioned was this: If you are with a patient who is at an end-of-life moment and there is something you would like to share later with the patient’s family, jot down a note with the details and drop it into our Daisy box,” Mr. Nover said, referring to an awards program at the hospital. “Then the goal would be, when things calm down a little bit, to create a procedure for getting those letters to the patients’ families.

From left: Amparo Sullivan RN, Melissa Farmer RN, and Stefanie Dimitriadis RN.

That is indeed what happened. In addition to compiling the notes, Dr. Zazzu and Mr. Nover reached out to nurses for more remembrances during the daily huddles of departments such as the ED and Preoperative, Postoperative, and Palliative Care. Even after many weeks, the nurses had “amazing, vivid memories,” Mr. Nover says.

The nurses were told, “We don’t want this to be a burden, because you have a lot to do,” Dr.  Zazzu says. “We are just saying that if writing a letter can help relieve a burden for you, all you have to do is write it, and I will take care of the rest, make sure it gets to the family.”

After receiving the letters, family members have been writing back in profound gratitude. One family called the Mount Sinai Queens nurses “RN angels” and offered to pray for their safety as they cared for patients.  The letter-writing program is now well-established at Mount Sinai Queens, Mr. Nover and Dr. Zazzu say. And they hope it can spread through the Health System and beyond, because even though the crisis has waned in New York City, patients can still die without family members, far from home.

“It’s nice that we can tell families about their loved ones, and their stay, and how it affected us,” Ms. Sullivan says. “We hope it will give them a little peace of mind, and it’s therapeutic for us to share these experiences.”

Here are some of the messages from nurses to families, from heart to heart.

“Your mother was in no distress when she passed peacefully. I spoke to her, and told her how much her family loves her.”

“Your father was so, so brave. I won’t forget him.”

“People show you who they are down to the core when they are in life-and-death situations. Your mother was so kind. I prayed for her on my lunch break.”

How I Recovered From COVID-19 at Home With the Help of a New App: A Patient Story

Roberto Rapalo, a patient at Mount Sinai, at home with his family

Should I go to the hospital or stay at home? This is one of the first questions that people who think they have COVID-19 wrestle with. Now, thanks to a remote monitoring platform from Mount Sinai Health System called Precision Recovery, patients can have their symptoms monitored by a provider daily, and know that their care will be escalated if necessary.

Once a patient signs up, a member of the Precision Recovery team at Mount Sinai contacts the person for an online video chat. The patient then downloads a daily symptom tracking app onto any smart device which monitors symptoms of the virus, such as body temperature, cough, breathing levels, and body aches. A provider checks in with the patient weekly through video chat. But if the symptoms get worse, the patient is contacted by a provider to discuss the new or worse symptoms and determine if increased monitoring or an emergency room visit is needed.

Read more about Precision Recovery

David F. Putrino, PhD, Director of Rehabilitation Innovation for the Mount Sinai Health System, and Christopher Kellner, MD, a cerebrovascular neurosurgeon with the Mount Sinai Health System, developed Precision Recovery, an innovative system to monitor patients with COVID-19 symptoms remotely so they can stay home and rapidly respond to their needs when necessary. Click here to read a Q&A, in which they describe how this novel platform can help patients and hospitals in New York and throughout the United States.

“Precision Recovery worked great for me. COVID-19 was a battle—I had it for 14 days and each day was like a new round in a boxing match. Between Day 7 and 12, I was so weak it was difficult to think properly,” says Roberto Rapalo, a patient at Mount Sinai who used the new system. “I was struggling with the decision of whether to go to the hospital or not. It was scary, but the fact that my data was being monitored every day gave me confidence. Dr. Kellner was watching my symptoms progress, and I trusted the advice he gave me. He helped me get through this. In my opinion, you can’t get through COVID-19 by yourself.”

Precision Recovery was developed by David F. Putrino, PhD, Director of Rehabilitation Innovation for the Mount Sinai Health System, and Christopher Kellner, MD, a cerebrovascular neurosurgeon with the Mount Sinai Health System.

Dr. Kellner said the system allows physicians to closely monitor patients, which is important because the disease can take a different course for every one of them.

“Sometimes people are doing pretty well for a week or ten days, and they may even to start to feel better. But then they start feeling much worse for a day or two after that. That was the case with Rob,” he says. “He began having a hard time breathing and had fever again. So we initiated a video chat with him, and I was able to assess his condition. I saw that he was short of breath, but we talked through the criteria for coming to the hospital. That gave him the confidence that even though he was feeling worse, he would be able to ride it out at home. After a day of bad symptoms, he started to feel better, and he never had to come into the hospital.”

Mr. Rapalo said the system helped him track his symptoms and develop trust in his doctors.

“Every day I input my blood pressure, my temperature, my heart rate, oxygen saturation, as well as whether I had shortness of breath, chest pains, or other symptoms. And that helped me trust that the doctor really did understand what I was going through,” he says. “In the end, I really needed that pep talk. With any other disease I’ve had, once you start to feel better, that’s it. But COVID-19 is longer than any other disease I’ve had. And when I got worse after starting to feel better, that surprised me. So my conversation with Dr. Kellner made me feel that he had my back and was supporting me.”

What he experienced is typical for many COVID-19 patients, according to Dr. Kellner.

“Rob is a perfect example of what most people are going through with this disease. It’s unpredictable how it will go for each individual person. We’re still trying to figure that out as a medical profession, and sometimes there’s mixed messages,” says Dr. Kellner. “Someone might go to an urgent care center and be sent home with the instructions, if your symptoms get worse, contact your provider or call 911. If patients have this roller-coaster ride of symptoms, they need repeat assessments, and that’s what Precision Recovery provides.”

The goal of the system is to keep people out of the hospital who don’t need to go, and give people at home the assurance that they are being monitored effectively. Another goal is to catch people at home whose symptoms worsen and require hospitalization.

“That has happened—we saw that they met the criteria for being hospitalized, so we called an ambulance and contacted the emergency room to let them know that a COVID-19 patient was coming in,” says Dr. Kellner.

It’s important to note that this is a daily data entry by the patient, so doctors can’t necessarily react to an emergency. Patients may still need to call 911 in an emergency. Or they may need an urgent care visit or a virtual visit like Mount Sinai NOW.  Precision Recovery fills a role somewhere in between.

Mr. Rapalo said he began feeling better after about two weeks with the illness.

“I turned a corner around Day 13 and now I feel so much better. My cough has decreased and I’m improving every single day,” he says. “I’m still entering my data every day, so that if I do get worse, I’ve got a safety net. I have an appointment with the physical therapist of the Precision Recovery program, and I’m looking forward to getting tips on how to improve my breathing and the tightness in my chest.”

He added, “The main benefit of the Precision Recovery program is that you have people standing by your side, fighting with you. And that helps with your mental side of your recovery, and helps you make the right choices for your care. I am looking forward to being 100 percent, and I believe the program is getting me there.”

To enroll in Precision Recovery, text “Precision Recovery” to 332-213-9130.

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