Home-assisted ventilation for ALS: Stacy’s story
When Dr. Stacy Lewin started experiencing symptoms of ALS, she turned to the Penn Medicine Fishman Program for Home Assisted Ventilation.
Stacy Lewin, MD, an obstetric anesthesiologist living in Cherry Hill, New Jersey, knew from a young age that she wanted to be a physician.
“When I did my OB rotation, I found I loved taking care of two patients–moms and babies,” said Lewin. “To be part of such an intimate experience as the birth of a child is an honor. It's not a job; it's my life."
That life was about to drastically change when in July 2020, Lewin started losing subtle motor skills in her hands. She was also getting winded easily.
“When I started having trouble swallowing as another symptom, it was in the back of my head that I might have ALS,” recalled Lewin.
The path to ALS diagnosis and treatment
Amyotrophic lateral sclerosis (ALS) is a disease of the nerve cells in the brain, brain stem, and spinal cord that control voluntary muscle movement. Also known as Lou Gehrig’s disease, ALS affects about five of every 100,000 people worldwide.
There is no single test for ALS, making diagnosis a challenge. After many months and many tests, in February 2021 Lewin learned she had the disease and started working with pulmonologist John Hansen-Flaschen, MD, director of the Penn Medicine Fishman Program for Home Assisted Ventilation, to address her shortness of breath.
“He was very proactive. I was having ‘air hunger.’ He did a study that qualified me to use a respirator at night. I learned that early use of this device prolongs lung function and life, so I was eager to start using my respirator,” explained Lewin.
Because ALS is a progressive disease with no cure, it was important to Lewin that she proactively manage her condition. She wanted to take actions that enable her to enjoy life and do the things she loves, including traveling with her husband and sons. She is now working closely with Jason Ackrivo, MD, associate director of the program, and other multidisciplinary team members to monitor her condition and navigate her journey.
The mission of the Fishman Program for Home Assisted Ventilation
“Maximizing each patient’s quality of life and providing tools to help them do the things that make life meaningful to them is at the core of the Fishman program,” said Ackrivo. “With the right breathing support, it’s amazing how patients can live their lives to the fullest. If I can help patients like Dr. Lewin do the things they want to do, that's a happy moment.”
The Fishman program's multidisciplinary team of lung specialists works with patients to coordinate the proper treatment for respiratory conditions that make breathing difficult.
“The members of the support team of nurse coordinators, respiratory therapists, speech-language pathologists, and social workers have been so helpful in answering my questions and helping me get the support I need,” said Lewin.
Breathing treatment options improve quality of life
Lewin uses a positive airway pressure machine at night. This non-invasive ventilator with a facemask helps her get the sleep she needs. Advanced settings automatically adjust the positive pressure from the machine to maintain normal breathing throughout the night. She keeps the portable device with her during the day and brings it when she leaves home. If she feels out of breath, she can use the machine to help her breathe better.
“The providers in the Fishman program have had an incredible impact on my life,” said Lewin. “First and foremost, they help me breathe. By the end of the day, things are more difficult. Without the machine, I would not be able to sleep. It comes with me all the time now. I never know when I will need it. My machine literally breathes life into me.”
Ackrivo and his team make sure Lewin’s machine is optimized to provide adequate ventilation, while ensuring her comfort. They help with mask fitting and in-office setting adjustments. And, with telemonitoring, they can remotely monitor and adjust her machine’s usage levels and performance.
“We can log in and view a patient’s data, including monitoring CO2 levels. We can view the data alongside the patient’s subjective assessment of what they are experiencing and make adjustments accordingly,” explained Ackrivo. “We have a very sophisticated and unique program for home-assisted ventilation.”
Lewin also uses a cough assist machine to help keep her lungs open and the muscles around her lungs healthy. This device fills her lungs with air then draws the air forcefully out to boost her ability to cough and clear mucus from her lungs.
“The Fishman team is so supportive and brilliant,” shared Lewin. “They all are incredibly knowledgeable about respiratory care and work collaboratively to meet my needs. I can talk to them about anything. They listen and give me advice. They are also very proactive. I feel hope when I walk out of that clinic. They give me support and say, ‘we’re going to keep going!’ They are very responsive and available. I am so thankful I found the program.”