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Pulmonary Care for Duchenne (Lung Muscles)

Care for the Heart

The information on this page represents the recommended standard of care for Duchenne muscular dystrophy. Most of the care recommendations also apply to Becker muscular dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both males and females with Duchenne. 

If you don’t understand any of the medical terms and concepts, ask your healthcare providers. Take notes and ask questions during your clinical visits.

Remember

Lung Facts to Remember

1. People with Duchenne will need antibiotics, extra breathing tests, and extra help coughing if they have an infection.
2. People with Duchenne should NEVER have inhaled anesthesia, the drug succinylcholine, or any derivative of succinylcholine.
3. If your oxygen level drops when sick or injured, your doctor must be very careful giving oxygen.
4. Lung function should be checked before surgery.

 

Coughing and Breathing

Duchenne affects your muscles—including those important for breathing. Lung muscles will get weaker as you grow older. Eventually, people with Duchenne will have trouble breathing (hypoventilation).

  • While still walking, you will probably not have trouble breathing and coughing.
  • After you stop walking, you may have trouble coughing.
  • When you become a teenager, you will need help to be able to cough and may need to use a cough assist machine.
  • As a teenager, you will start to have trouble breathing at night (nocturnal hypoventilation) and may need to use a BiPAP or CPAP machine to help take a deep breath.
  • When you are an older teenager or young adult, it will be hard to breathe on your own (hypoventilation) and you will need to use a BiPAP or CPAP, or an external ventilation machine to help you breathe.

In addition, you may need extra help when you have a chest infection or surgery. You may temporarily need to use a cough assist or breathing machine (ventilator).

Symptoms of Breathing Trouble

If you have one or more of the following symptoms, you may have trouble breathing. See a doctor that specializes in caring for the lungs (pulmonologist) if you see any of these symptoms.

  • Seem very tired all of the time.
  • Short of breath, or seem unable to catch your breath.
  • Have headaches in the morning or throughout the day.
  • Often sleepy for no reason.
  • Have difficulty paying attention.
  • Have trouble sleeping, wake up a lot during the night, have trouble waking up in the morning, or often have nightmares.
  • As you wake up, you try to catch your breath.
  • As you wake up, you can feel your heart pounding.

Recommended Care

Below is the recommended standard care for lungs. Talk to your doctor about care options that go above standard care.

  • While walking
    • At least once a year, go to a doctor to have a breathing test called forced vital capacity (FVC).
    • Keep a copy of your latest breathing tests to show the other healthcare professionals who take care of you.
    • Get all of the recommended childhood shots.
    • Get a flu shot every year, starting at 6 months old.
    • Get a pneumonia shot at 2 years old.
    • If sick, especially with a cold or chest infection, make sure to receive antibiotics, extra breathing tests, and extra help coughing.
    • If you need surgery or go to the emergency room, tell the doctors NOT to give inhaled anesthesia or succinylcholine. They also need to be very careful giving oxygen.

  • When in a wheelchair
    • Have breathing tests to measure how well you are coughing and breathing at least every six months, before you have surgery, and when you have a chest infection.
    • Make sure your healthcare team includes a doctor and a therapist who know how to take care of people with weak breathing muscles.
    • Talk to your doctor about how you can cough and breathe more easily.
    • Keep a copy of your latest breathing tests to show the other healthcare professionals who take care of you.
    • Get a flu and pneumonia shot.
    • If you use a breathing machine at night, you may now also need it in the daytime. Make sure you know about using cough assist and breathing machines before you have surgery.
    • If you get sick, especially with a cold or chest infection, make sure to receive antibiotics, breathing tests, and extra help coughing. You may also need to use a breathing machine (ventilator) for a while.
    • If you need surgery or go to the emergency room, tell the doctors NOT to give inhaled anesthesia or succinylcholine. They also need to be very careful giving oxygen.

 

Related links

Understanding and Caring for Lungs (download)
Care Guidelines

Respiratory Consensus Statement by the ATS (study funded by PPMD)
DOWNLOAD: Short, one page medical history fill-in sheet
DOWNLOAD: Managing Colds with Duchenne (How and when to use a cough assist machine during a respiratory illnesses/cold)
VIDEO: Pulmonary Webinar Series Recordings
BLOG: Avoiding the Emergency Room
BLOG: Ventilation FAQ Booklet from DMD Pathfinders
BLOG: "Pulmonary Care and Duchenne" presentation by Dr. Lisa Wolf
BLOG: Duchenne Respiratory Question: Cough Assist vs the Vest
BLOG: Oxygen and Duchenne


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