INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
Ask the Experts
IVUN's "Ask the Experts" series first appeared in the Winter 2009 issue of Ventilator-Assisted Living. The questions came from ordinary users of home mechanical ventilation, which IVUN then asked various experts in our network to address in the pages of the newsletter for others to learn from. To view the responses to each question, click on the issue number preceding the question.
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Vol. 26, No. 5
Question: What and when is the best use of pulse oximetry for someone like me with a neuromuscular disorder? I am concerned because I have a new device, and the number fluctuates up and down. This happened in the hospital too, and I was told the device was working properly.
Vol. 26, No. 4
Question: I have seen pictures of mouthpiece ventilation, but would like more details on how to set it up. Can someone describe theirs?
Vol. 26, No. 2
Question: Could your experts please clarify who establishes the settings on a ventilator for a person with a neuromuscular condition?
Vol. 25, No. 6
Question: As a night-time ventilator user due to a neuromuscular condition, I need to be alert to any infection developing in my lungs or sinuses. I typically ask for and use an antibiotic at the first sign of any infection. However, I hear more and more warnings that taking these medications can result in a resistance to antibiotics. What guidance can you offer to help me (and my family physician) decide when to take antibiotics?
Vol. 25, No. 5
Question: Individuals with high-level (C1-C3) spinal cord injuries need to use ventilators full time to assist their breathing. However, I know several people with a spinal cord injury at a lower level who were weaned from the ventilator but now, decades later, seem to be having more trouble breathing. What kinds of tests should be conducted to evaluate their breathing? Would a bilevel device with a nasal or face mask be prescribed to use at night?
Vol. 25, No. 4
Question: Physicians are required to indicate a “diagnosis” for their patients from pre-defined categories for insurance purposes. My new pulmonologist, who struggled to find a plausible one for my constellation of respiratory problems (polio, iron lung at first, then nighttime ventilation since 1952), finally chose chronic respiratory failure and added a note about polio. Is there a more appropriate choice? Chronic respiratory failure sounds dreadful.
Vol. 25, No. 3
Question: I am on a vent users’ listserv, and periodically the group discusses cuffed vs. uncuffed trach tubes. Can someone explain when and why a cuffed trach tube is preferable? When is it not? If a cuffed trach tube is used, when should it be inflated?
Vol. 25, No. 2
Question: My friend in Hawaii has spinal muscular atrophy, Type 3 (SMA3), uses a ventilator, and is in a motorized wheelchair. Her husband is her sole caregiver since they have no insurance or money for private care. She is not old enough for Medicare and his income (on paper) does not qualify them for Medicaid. How do other ventilator users obtain attendant care?
Vol. 25, No. 1
Question: When is a sleep study necessary in people with neuromuscular disorders (NMD) in order to diagnose breathing problems? Are the screening devices such as ApneaLink™, for example, useful in diagnosing sleep apnea?
Vol. 24, No. 6
Question: For people who want to understand why BiPAP is suboptimal, that is, since you cannot turn off the EPAP, and the IPAP is rarely set high enough to fully rest the inspiratory muscles, ventilators like the LTV series, Trilogy and Newport can be recommended. Any ventilator without EPAP is more appropriate.
BiPAP would be OK at settings of IPAP 22 to 30 and EPAP minimum. But because of the EPAP, it is less comfortable this way, and it cannot be used for air stacking. This is discussed in my book, Management of Patients with Neuromuscular Disease available at www.doctorbach.com.
Ventilator-Assisted Living asked the three recommended ventilator manufacturers to elaborate on what features of their product(s) address this issue.
Vol. 24, No. 5
Question: I am a polio survivor and I don't want to start assisted ventilation because if I go on a bilevel device as suggested, I fear that my breathing muscles will become weaker. Is my fear displaced?
Vol. 24, No. 4
Question: The IVUN office has received several reports from families of users of noninvasive ventilation (NIV) who choke, get pneumonia or have major surgery, and end up trached, either in a skilled nursing facility or in a long-term acute care hospital. They are told they can’t be discharged until they are weaned from the vent. Should complete weaning be the paramount goal, particularly when individuals have used NIV successfully in the past?
Vol. 24, No. 2
Question: “I read about new ventilators in Ventilator-Assisted Living and would like to get one. I spoke with my current home health care company for durable medical equipment (DME), and they said that if I wanted the Trilogy100 or the Puritan Bennett 540™, I’d have to switch home health care companies because they don’t carry them. How do I find a local home health care company that provides the newer vents? Does it make a difference if I have private insurance or coverage by Medicare or Medicaid?”
Vol. 24, No. 1
Question: What are the advantages of a using a volume ventilator rather than a bilevel unit? When is it appropriate or necessary for an individual to transition from a bilevel to a volume ventilator?
Vol. 23, No. 4
Question: I am a vent user with a trach who has MRSA (methicillin-resistant Staphylococcus aureus) for the second time. I have been suctioning both fresh blood and blood plugs and clots for a week. I use the CoughAssist® intermittently and try not to suction too often, using the red rubber suction tubes to avoid irritation. Is it your experience that MRSA causes bleeding and, if so, what are options for resolving the problem? I am on Bactrim based on my sputum culture. The last time I had MRSA for four months. It wasn’t until Bactrim was combined with rifampin that it cleared up.