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NETWORKING
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Can You Help?
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Ventilator Use
Attention Ventilator Users! Assist IVUN in obtaining data that can be used to connect ventilator users more effectively with each other when medical or equipment problems arise or when new users need information and support. Connect here to complete the IVUN Census about your ventilator use.
INDEX:
Opinion regarding easy switchout batteries in the LTVs
What to do for person who uses a vent and cannot speak nor eat
I use a nasal mask for nighttime ventilation and have trouble with "dry mouth." Any suggestions?
Interested in the experiences of individuals who have used any of the Pulmonetics ventilators
Is there a nasal mask that can be put on by a person with the use of one weak hand?
How many ventilator users are there in the United States?
How many ventilator users are there in Europe?
ITEM VU110, Posted 2-21-06
I own two vents from different manufacturers. One offers maintenance service and some home healthcare services by contract directly with me; the other one does not. I have experienced great difficulty getting maintenance and repair service from the second manufacturer. They want me to use a home healthcare company, but I have been told by home care companies that they can't help me since I own the machine and that I need to deal directly with the manufacturer. How many other vent users are in this situation, and how do they cope with it? Alan F., Virginia, fialaalan@earthlink.net
ITEM VU109
Question: Does anyone know of an alternative to using elastic bands to secure ventilator connection to the tracheotomy? I use an in-line suction so that I can perform the suctioning myself. The elastics tend to fall off sometimes. Robert, British Columbia, Canada, bobgordon2001@telus.net
Response, 1-9-06:
Larry's Trach Care Routine: While still in the hospital for the tracheostomy, my wife and I were trained in the routine cleaning of the skin around the stoma. This consists of starting next to the stoma and wiping in concentric circles away from the stoma with a single tipped cotton applicator soaked first in distilled water and then in peroxide. Once the area has been thoroughly washed with peroxide the same routine is followed with an applicator soaked in plain distilled water to rinse the area. Finally, the area is dried with a dry single tip cotton applicator. A fresh, clean drain-sponge is placed under the trach tube faceplate and around the stoma and everything is re-secured with the trach ties. He uses Trach Collars, MARPAC One Size Fits All Series soft foam trach collars with smooth edges and Velcro™ tabs for a secure closure. www.marpac.biz/collar.html
ITEM VU108
Opinion regarding easy switchout batteries in the LTVs: An SCI quadriplegic man who I've known for many years has done okay with old LP4 vents on his wheelchair. He decided it was time to upgrade, and got the LTV 800. They went to New York City for dinner and a show. They were not completely familiar with the battery limitations of the LTV ventilators. After five minutes in the show, the low voltage alarm sounded. They had to leave immediately, and do some hustling to keep him ventilated. This is not a condemnation of the LTV ventilator series. It takes more 12VDC current to operate high speed turbine motors than the older piston pump type units such as LP10, PLV-100 and PLV-102. The high performance ventilation standards of the LTVs speak well for these units. What would help is a quick and easy battery switch-out cartridge that is dropped into place with no tools. It would have briefcase shape with a handle. An evening at the theater would be much better this way. Jerry, Vancouver, Washington, jerrypd2000@aol.com, 360-883-4857
Response: LTV makes a Universal Power supply that replaces both an external battery and the power pack supply. These units can power the ventilator for 4-6 hours depending on battery use. There is no "cable switchover" involved and just plugging and unplugging the unit from A/C, it automatically switches to battery or A/C. Visit www.pulmonetic.com to view the product. Martha, mgaynor2@mac.com
ITEM VU107
Question: My father uses a vent and cannot speak nor eat. Doctors don't know why he is not able to eat, because medically there is nothing wrong and he should be able to but can't. I want to know or hear if anyone has had similar experience that can share if they know of ways to cure him. Thank you so much. Sahra, Denver, Colorado, b_zchi@yahoo.com
ITEM VU106, Posted 9-04
The American Sleep Apnea Association (www.sleepapnea.org) publishes many education bulletins about sleep apnea, two of which are also useful for people with neuromuscular disease who use assisted ventilation via a facial or nasal mask: "Choosing a Mask and Headgear" (www.sleepapnea.org/mask.htm) and "Choosing a CPAP Machine" (www.sleepapnea.org/cpap.htm). In general, people with neuromuscular disease use bilevel rather than CPAP units, but some may also have sleep apnea.
ITEM VU104, Posted 9-02
Question: I use a nasal mask for nighttime ventilation and have trouble with "dry mouth." Any suggestions?
Response, Spring 2002: A gel-like substance called Oral-Balance is available without subscription. It comes in a toothpaste-type tube and, when mouth dryness occurs, a small amount squeezed on the tongue works well.
Response from Clifford, Fall 2002: If you continue to have mouth dryness there are two solutions other than candy. If you have mouth dryness, my dentist say's that it can lead to tooth decay because the saliva (when its not available in the mouth) cannot neutralize the bacteria.
1. Make sure that the device makes a tight seal and doesn't leak.
2. Use an elastic chin strap to help keep the mouth closed.
ITEM VU103, Posted 7-02
Question: I am interested in the experiences of individuals who have used any of the Pulmonetics ventilators. I am particularly interested in its durability. Do you just hang it on your wheelchair? Does that work? Does going over bumps affect the operation of the machine? Also, does anyone use a volume vent, such as one of the PLVs or LPs at night and then use the Pulmonetics during the day? Have you had any problem adjusting to the switch? Please respond to info@ventusers.org and point out that you are responding to the question about switching to Pulmonetics ventilators.
Response, 3-03: I have an LTV 950 attached to the seat of my scooter and have used it for a year that way with no problems with function under any terrain, bumps, etc. I did find it hard to switch from the battle-axe vent used by the hospital especially during my initial use of the vent. Now I find there are differences between LTV 950s, their sound, their flow, even though they are identical, but this doesn't phase me, now that I am more used to using a vent. I will fly this weekend for the first time with my LTV and will let you know how that goes. Carole, carolezoom@mac.com
ITEM VU102, Posted 6-00
Question: International Ventilator Users Network receives many inquiries about which skilled nursing facilities (nursing homes) in the United States accept ventilator users. While we believe that home care and living independently within the community is preferable, we know that in some circumstances it is simply not possible. If you know of a skilled nursing facility (some have sub-acute units that provide more high-tech care) that accepts ventilator users, please respond with as much information (name, address, phone, etc.) as possible to info@ventusers.org.
Response, Spring 2002: See IVUN News, Spring 2002, Vol. 16, No. 1.
ITEM VU101, Posted 3-00
Question: Is there a nasal mask that can be put on by a person with the use of one weak hand? I can get my mask off, get out of bed to use the bathroom, but I have to awaken my husband to put the mask back on. Does anyone have any suggestion?
Response from Edward ("Tony") A. Oppenheimer, MD, FCCP, Pulmonary Medicine, Los Angeles (deceased): Two options might be considered ... Puritan-Bennett (Mallinckrodt) has a new Breeze nasal interface system for CPAP and for nasal ventilation. It uses nasal pillows rather than a mask, and is simple to use. Because it is new, we need evaluation by nasal ventilation users to know whether it works as well as expected (800-635-5267, press 2) ... SONI, the custom-fitted strapless oral-nasal interface (See book by Dr. John R. Bach, Guide to the Evaluation & Management of Neuromuscular Disease, Henley & Belfus (1998), 200 pages, ISBN 1-56053-301-3, 800-962-1892).
Response, Posted 11-29-05: I use a nasal mask by ResMed called Ultra Mirage™ and can get it on and off using only one hand. The lower strap clicks onto the mask without requiring the velcro to be adjusted. It is also the most comfortable mask I have found. Good luck. Tom, Columbus, Ohio, ttucker@inglenookpress.com
ITEM VU100, Posted 3-00
Question: How many ventilator users are there in the United States?
Response: According to "Mechanical Ventilation Beyond the Intensive Care Unit: Report of a Concensus Conference of the American College of Chest Physicians'" (Supplement to Chest, Vol. 113, No. 5, May 1998), Conference Chair: Barry J. Make, MD, FCCP, there were 11,419 individuals receiving long-term ventilatory support (defined as requiring mechanical ventilation for at least 6h/d for > 30 days) in 1990. This estimate is based on a telephone survey of 300 randomly selected respiratory care department directors and 100 pulmonary physicians conducted by the American Association for Respiratory Care (www.aarc.org) and the Gallup organization. For more data from this report, visit www.chestnet.org.
ITEM VU99, Posted 11-29-05
Question: How many ventilator users are there in Europe?
Response: From "Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey," published in European Respiratory Journal, Vol. 25, No. 6, 2005. Authors: S.J. Lloyd-Owen, G.C. Donaldson, N. Ambrosino, J. Escarabill, R. Farre, B. Fauroux, D. Robert, B. Schoenhofer, A.K. Simonds and J.A. Wedzicha.
Abstract: The study was designed to assess the patterns of use of home mechanical ventilation (HMV) for patients with chronic respiratory failure across Europe. A detailed questionnaire of centre details, HMV user characteristics and equipment choices was sent to carefully identified HMV centres in 16 European countries. A total of 483 centres treating 27,188 HMV users were identified. Of these, 329 centres completed surveys between July 2001 and June 2002, representing up to 21,526 HMV users and a response rate of between 62% and 79%. The estimated prevalence of HMV in Europe was 6.6 per 100,000 people. The variation in prevalence between countries was only partially related to the median year of starting HMV services. In addition, there were marked differences between countries in the relative proportions of lung and neuromuscular patients using HMV, and the use of tracheostomies in lung and neuromuscular HMV users. Lung users were linked to a HMV duration of <1 year, thoracic cage users with 6-10 yrs of ventilation and neuromuscular users with a duration of >6 years. In conclusion, wide variations exist in the patterns of home mechanical ventilation provision throughout Europe. Further work is needed to monitor its use and ensure equality of provision and access.