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Dear Andrea, I have just been told by my doctor that I need to start Non Invasive Ventilation (NIV). I'm wondering what benefits you've seen from it. Sincerely, Starting NIV Dear Starting NIV, Everyone is different, and there's an adjustment period to transition through for NIV; but I'll be happy to share the benefits I personally have seen since starting NIV. I've broken them down into six gains I've experienced. 1. Fewer sleep interruptions - I found that while on NIV, I would go to sleep and wake up less throughout the night or would sleep the entire night without any awakenings. I even found myself sleeping so deeply I began having delightful and even comical dreams again! 2. Feeling more well-rested/having to sleep less - I went from having to sleep 10 or more hours to feel well rested to needing to sleep seven to eight hours per night. It's amazing how this alone enhanced my quality of life, because I was sleeping so much before NIV that I felt it was hard to get much of anything else done outside of my work schedule. On NIV, I can sleep less and get up and "seize the day," enjoying hobbies and fulfilling my purpose. 3. Improved respiratory health - I never had a lot of respiratory infections before NIV, but I have not had any severe chest infections that resulted in hospitalization since beginning NIV. I am also very disciplined and a firm believer in the benefits of DAILY use of insufflation/exsufflation via a device known as the CoughAssist. 4. Less fatigue/more energy - Before NIV, I was having periods of fatigue that at times could be debilitating and so frustrating. After starting NIV, I saw this gradually improve to the point that my fatigue typically does not start until evening.
5. Healthier weight - It was a gradual process that took a few years, but my BMI (Body Mass Index) transformed from the abnormal/malnourished range that is so common in congenital forms of Muscular Dystrophy like mine to the normal range of the BMI. I had been considered underweight for decades, but NIV got my weight into a normal range. An unexpected bonus to this was that my body image was enhanced, and I had a new ease in finding clothes that fit without alterations. 6. Improved pulmonary function test (PFT) results - Before I began NIV, my PFT Forced Vital Capacity (FVC) results were four to six percentage points lower than they were after adjusting to NIV. This will vary from person to person and form of NMD, but it's a possible benefit to NIV. I hope your own experience with NIV results in similar enhancements to your quality of life! Wishing you all the best, Andrea Many of you have reached out to me and asked for advice on how to choose between two different ventilation devices or select between two different device brands. We are so lucky to live in a time in the U.S. when so many choices exist for complex medical devices, including mechanical ventilation devices! Many of the machines boast some amazing features that help us breathe our best. But when it comes to choosing the right bi-level device (i.e. BiPAP or home use, portable ventilator), it can quickly get complicated. There are many reasons why one would select one ventilation device over another. Frankly, it seems to be a personal decision, and there is no right or wrong. It only matters that you seek the advice of your respiratory care team, and select the device that best meets your needs today and is likely to meet those needs as your Neuromuscular Disease progresses over time. To help with this decision making process and answer basic comparison type questions, the International Ventilator Users Network (IVUN) has done their homework! They maintain a thorough document known as the "Home Ventilator Guide." It's a great resource, and if you are at a crossroad as to which device to select or just new to the mechanical/assisted ventilation arena, I recommend this guide at http://www.ventusers.org/edu/HomeVentGuide.pdf.  Wishing you the best in your ventilation decision making,
Andrea |
AuthorAndrea is the Founder & President of Breathe with MD, Inc. and served as Ms. Wheelchair Tennessee 2017. Her blog posts are based on experience living with a Neuromuscular Disease. The blogs are not to be used as a substitute for medical care. Always seek medical advice and care from a licensed medical professional. Archives
June 2023
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Breathe with MD, Inc. is a U.S. registered 501(c)(3) nonprofit organization. Donations are tax deductible to the extent allowable by law.
Note: This website should not be used as a substitute for medical care. For medical care or advice, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
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Note: This website should not be used as a substitute for medical care. For medical care or advice, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
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