In the 15 years since Nicole Miller sustained a spinal cord injury at the C1-5 levels, she has battled respiratory distress and pneumonia almost every year. Miller, a 35-year-old quad who works as the outpatient clinical care counselor at Craig Hospital, has dealt with collapsed lungs, MRSA, complications from esophageal surgery and the everyday difficulty of clearing her lungs. “I’m prone to mucus plugs, which collapse the lung,” she says. “I was in the ICU on a trach when I got my first pneumonia, shortly after the initial surgery. The pneumonia came with MRSA, which has been an ongoing problem, as it flares up every time I run into lung problems.” Like many people with SCI/D, Miller’s main problem is simply not having the lung power to expel the secretions, which often leads to respiratory distress and pneumonia.
While respiratory diseases account for only 3 percent of all deaths in the general population, those same respiratory diseases account for more than 22 percent of all deaths in people with long-term SCI. And that’s only part of the picture according to Dr. Stephen Burns, who is the director of the SCI Service at the VA Puget Sound Health Care System and an associate professor at the University of Washington Department of Rehabilitation Medicine. “Because people die at a somewhat younger age with SCI, especially those with higher level injuries, the actual difference in risk is much greater,” he says. “The average person with an SCI’s risk of dying of pneumonia is 37 times higher than in the general population.”
Those statistics raise the questions: What are the causes of SCI respiratory diseases (especially pneumonia)? What is most effective in treating pneumonia once you contract it? And what can we do to prevent respiratory diseases?
The Basics of Breathing
Respiratory infections are much more prevalent for people with SCI and neuromuscular disease due to the mechanics of breathing. The main muscle used in breathing in (inspiration) is the diaphragm, which is innervated at C3-5. People with central nervous systems compromised above C3 usually require a ventilator for breathing, while people with C3-5 injuries are able to take small breaths. Those with impairments below C5 are able to take deeper breaths.
However, infection problems often stem from the inability to adequately move air out of the lungs (expiration). Expiration requires both intercostal and abdominal muscles to squeeze the ribs together and expel the air. Under normal conditions most wheelers have little problem doing so. But quads like Miller, as well as paras with injuries as low as T12, often experience compromised ability to cough. Without the ability to cough, people are unable to adequately clear the mucus produced daily. This can block the airways and prevent the lungs from absorbing oxygen, and can result in atelectasis, the collapse of part of a lung, as well as open the door to infections.
Staying Ahead of Secretions
In order to expel mucus before breathing becomes impossible and infections develop, wheelers may need to resort to multiple options to expel secretions, none of which are pleasant. Most require assistance from a friend, caregiver or healthcare professional.
Quad coughing, which usually involves the wheeler lying flat while someone presses hard inward and upward on the abdomen to simulate coughing, is probably the most common solution for wheelers in need. It can mobilize and expel mucus but is only about 50 percent as effective as a nondisabled cough. Quad coughing is also often anxiety-provoking for those who have never done it before, but learning comes quickly and most eventually feel comfortable performing it.
Suctioning is an option for more serious mucus buildups, but it comes with increased invasiveness, as someone removes the mucus from the lungs using a suction tube. Not for the faint of heart, suctioning requires skill and is invasive enough to cause trepidation for caregivers and anxiety for recipients.
Enter the mechanical insufflator-exsufflator device made by Philips
For many quads like Miller and Jeff Epp, a 56 year old living with a C5 injury from a diving accident in 2007, the CoughAssist has been a literal and metaphorical breath of fresh air. “It works well,” says Epp, who has ended up with a trach twice from post-surgical complications. “I have a routine now and use it to expand my lungs and open up the airways.” Miller says she finds the device to be less stressful on her body and more beneficial than either quad coughing or suctioning.
Pam Lauer, a nurse practitioner at Craig Hospital’s outpatient clinic, reports, “We have had good success with cough assist devices in both treatment and prevention of pneumonias, especially in our high tetras.” Burns reports good success with sending units home with families. Not surprisingly, he says it’s strongly preferred over suctioning.
Bronchitis and Pneumonia
Even with proper care, infections can still take hold. Bronchitis and pneumonia are the most common lung infections wheelers face. Both present the problem of expelling mucus build-up. Bronchitis is an infection in the tubes leading to the air sacs (alveoli) in the lungs, while pneumonia is an infection of the alveoli. Neither is pleasant and both are serious, causing significant shortness of breath and difficulty breathing due to chest congestion and the inability to expel secretions. Though chest colds can also compromise breathing, Burns says that most chest colds do not progress into bronchitis or pneumonia.
However, he does say that anyone with a SCI and a cough impairment should be concerned with any type of respiratory distress or problems mobilizing and expelling mucus. “We know two things,” he says. “People with SCI are much more likely to contract pneumonia, and if they do, they are much more likely to die from pneumonia. As a result, our VA hospital has a low admission threshold for pneumonia, especially if people have cough impairments and difficulty mobilizing secretions.”
Burns’ recommendations mirror those of health care professionals connected to Craig Hospital and other facilities familiar with treating SCI. They all recommend a similar approach to chest congestion.
Everyone stresses the necessity and importance of staying hydrated to keep the secretions mobilized, which helps in expelling them. They also find no harm in trying some type of over-the-counter expectorant medication. Keep track of your temperature, pulse and oxygen saturation, and use quad coughs or a cough assist device to clear your lungs. However, should the congestion or chest cold/flu-like symptoms persist or worsen, get thyself to a physician … quickly. Pneumonia is serious and most likely requires powerful prescription meds and professional medical attention, preferably by someone familiar with neurological conditions.
Pneumonia treatments vary. In addition to suctioning, quad coughing and/or using an MI-E, many suggest a variety of other types of cough assist methods and devices, which are usually quite individualized and specific to each person.
“Every time I got sick, I’d go to the doctor and they’d admit me because we knew what was going to happen,” says Miller. Most of those incidents landed her in ICUs and often required a trach and vent. Her most recent encounter, in 2013, followed an esophageal surgery. Her lungs collapsed. “The guy who was using the ambu bag on me overinflated my lung and popped it like a balloon; more chest tubes. I coded twice. I told them to withdraw care and then suddenly I got better.”
Formally known as intermittent positive pressure breathing, breathing treatments are another option. IPPB uses a mechanical respirator to deliver a controlled pressure of a gas to assist in expanding the lungs as well as deliver aerosol medications. While widespread use is no longer in vogue, professionals at Craig and elsewhere continue to advocate for the efficacy of IPPB use. “Though it’s a relatively old treatment, I like it and often send people home with a disposable device to use,” says Cate McGraw, a nurse practitioner with Denver’s National Jewish Health. Darlene Dumont, manager of respiratory care at Craig Hospital, also recommends it as a way to mobilize secretions and expel them.
“When I was in the hospital they gave me these breathing treatments,” says Epp. “I hated them at first until I realized they worked. They loosened up the gunk in my chest so I could get it out.”
For Beatrice Duran, 35, a C2-4 quad since a motorcycle accident nine years ago, breathing treatments helped but didn’t solve the problem. “I had to stay in the hospital for a week or 10 days each time,” she recalled. “I got breathing treatments every four hours and got suctioned every hour or so. There were times when it felt like I just couldn’t get any air at all.” Four years ago she received a diaphragm pacer, which freed her of both a vent and the yearly bouts with pneumonia she’d been dealing with. Since she got the pacer, she’s been free of pneumonia.
Chest percussion therapy is another method of mobilizing and removing secretions from the lungs. CPT consists of two therapies: percussion and postural drainage. The percussion consists of lightly clapping or tapping on the chest, back, and area under the arms. Vibrating chest vests or wraps can also be used to apply external vibration. Postural drainage removes mucus from specific parts of the lungs using gravity and different body positions to drain the mucus to the bigger airways where it can be expelled. Miller recalls her bed being inverted so that her feet and chest were higher than her head, allowing the mucus to drain to the upper parts of the lungs, making it easier to remove.
Draining the lower lung areas requires the chest area to be tilted 10-20 degrees below the hips by propping firm pillows or cushions under the hips with the head pointed down, usually on a bed. CPT is usually used in conjunction with some type of cough assist, i.e., quad coughing or an MI-E device. Deep breaths should be taken intermittently throughout the treatment to help expand the lungs and strengthen the cough.
Another option is a self-assisted cough, which involves extending the arms above the head and bending forward as far as possible while coughing. An alternative method is wrapping your arms around your trunk just below the rib cage, taking a deep breath and throwing your upper body forward while applying pressure to the abdomen, essentially a self-applied quad cough.
An Ounce of Prevention
Given their experiences, both Miller and Epp are committed to doing what they can in the way of preventive maintenance. In addition to regular use of the CoughAssist, Miller has also become something of a germophobe. “I try to steer clear of anyone who might be sick and carry hand sanitizer with me all the time. Now that I’m settled in Denver, I’m trying to get established with a pulmonologist.”
When it comes to tips for staying ahead of chest congestion, there are few surprises and a lot of common sense. In order to keep secretions mobilized, it’s also important to stay mobile, which means being up in your chair as much as possible, sitting up in bed if possible and when necessary, sleeping with your head elevated.
Don’t smoke and avoid second hand smoke. Be aware of high pollution, smog alert days and air quality in general. Try to stay away from people with respiratory infections, and get flu shots annually. Doctors also recommend getting a pneumonia vaccine and getting revaccinated if you are over 65. An additional vaccine has also been developed specifically for the older crowd; consult with your provider regarding timing and current CDC guidelines.
Burns and Dumont both suggest having baseline pulmonary function tests to determine normal oxygen levels and strength of breathing and coughing muscles. Doing so will provide a target in the event of a respiratory infection.
• Respiratory Health and Spinal Cord Injury: www.msktc.org/sci/factsheets/respiratory
• SCI Forum Reports on Respiratory Problems: sci.washington.edu/info/forums/reports/common_respiratory.asp
• Mechanical Insufflator-Exsufflator Device (CoughAssist): www.usa.philips.com/healthcare/product/HC1098160/coughassist-t70-ventilator
• Sleep Apnea and CPAP Use: www.mayoclinic.org/diseases-conditions/sleep-apnea/in-depth/cpap/art-20044164
Does Medical Marijuana Harm Lungs?
Given the widespread availability of medical marijuana across the country, it seemed prudent to ask about the wisdom of imbibing in this alternative medical approach. Responses were mixed, though all cited ethical concerns. No professional recommended or condoned use; all discouraged smoking. Burns suggested that while the evidence regarding smoking is not nearly as definitive and clearcut as for cigarettes, he did say, “Smoking will cause harm, perhaps enough to set off an episode.”
He quickly pointed to alternative delivery systems, including vaping, edibles and tinctures/oils, all of which carry fewer risks of causing breathing problems. Dumont feels that vaping is still degrading the lungs and should be avoided, suggesting that usage should be limited to edibles and tinctures/oils as prescribed. For those using MMJ to address spasticity, know that a particular strain known as CBD, or cannabidiol, is marketed specifically for spasticity and seizures; CBD strains normally do not deliver the euphoric high associated with THC strains.
No review of potential respiratory problems would be complete without mention of obstructive sleep apnea, which may affect as many as 40 percent of all people with SCI. Sleep apnea occurs when the throat muscles intermittently relax and block the airway during sleep. In essence, breathing repeatedly stops and starts during sleep, often without any awareness. The most noticeable sign of obstructive sleep apnea is snoring, though others include restless sleep, waking with a dry or sore throat or a headache, and daytime fatigue, sleepiness or not feeling rested after sleeping.
Some of the factors contributing to sleep apnea are obesity, smoking, swallow dysfunctions, being over the age of 50, using alcohol, sedatives or tranquilizers (including baclofen and other anti-spasmodics), family history, nasal congestion, being male and sleeping on one’s back.
Proper diagnosis normally requires a night in a sleep lab. The most common lab test records brain activity, eye movements, heart rate, and blood pressure, in addition to oxygen saturation, air movement through your nose while you breathe, snoring, and chest movements to indicate whether the presence of an effort to breathe. Testing can also be done at home to monitor oxygen level through the night, which will normally indicate the more serious forms.
Normal treatment is continuous positive airway pressure, which requires wearing a mask over the mouth and nose to deliver pressurized air, keeping the airways open. CPAP use is normally quite effective — if tolerated. Dumont considers using CPAP at least four hours a night a success. Quads may have more difficulty due to limited hand function for adjusting the mask.