Dr. Bach desperate need for recomendation of best ventilator for me

Please use this forum for any general discussions or questions you have about noninvasive ventilatory support and mechanical insufflation-exsufflation (MIE).
Debcarp
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Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Sun Aug 14, 2016 7:26 pm

Dr. Bach , I have slept in an iron lung for 38 years . I was diagnosed at 1 year old with SMA Type 1. I have tried the Newport HT50 and the Trilogy . Also Bipap and CPAP. Neither has been able to inflate my upper chest . I live in Houston Texas and nobody understands . I'm in desperate need to find a vent that works like the iron lung so that I can leave the house ! Please tell me if you have any suggestions on vents that will work ??

Thanks so much for your time ! Deborah Carpenter

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby bachjr » Tue Aug 16, 2016 7:41 am

Deborah, the ventilator is not the problem, it is undoubted the settings that you were put on the ventilator. That is, everyone mistakenly uses the Trilogy on BiPAP settings using a passive rather than an active circuit. The best thing to do is to use a LTV ventilator, a ventilator that can NOT be used with a passive circuit. Set it on a volume of 800 to 1300 ml and rate 12. Take in the air via a 15 mm angled mouthpiece and you won't need the iron lung during the day anymore or via nasal interface, prongs during the day, mask for sleep. You certainly do not need an iron lung anymore! If there is too much leak, you can use an intermittent abdominal pressure ventilator during the day and oronasal interface for sleep. You need to have your doctors contact me.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Thu Aug 18, 2016 7:54 pm

Dr. Bach, thank you for your reply ! I'm currently using the Newport HTV 50. It has a pressure and volume settings . Would this type of ventilator work ? If yes what settings would you recommend ? My iron lung settings are 28 negative pressure and 15 rate . I'm trying to stay away from Trilogy because the pulmonary expert I saw said the settings would only be done by her :lol. I'm so thankful for finding a Dr. that doesn't want to immediately trach . I anxiously awaiting your reply . You are truly a godsend ! Thanks , Deborah Carpenter

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Tue Aug 23, 2016 2:10 pm

Dr. Bach , what number should I give my doctor to call you ? Also which LTV model do you prefer ?

I appreciate your time , Deborah Carpenter

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby bachjr » Sat Aug 27, 2016 7:37 pm

Any LTV is OK, even the 800. Most people use the 850 or 900. 1050 is unnecessary. 973-9722850 Monday or Tuesday.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby IVUN » Fri Sep 02, 2016 9:33 am

CareFusion announced in August 2011 that they would no longer manufacturer the LTV 800®, LTV 900® and the LTV 950®. The end of support for the 800 and 900 is 10/31/2016 and the suggested replacement is the LTV 1100. The 950 date is 12/31/16. The suggested replacement vent is the LTV 1150.

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Wed Sep 28, 2016 5:36 pm

Dr. Bach , my pulmonologist Dr. Marcia Katz should be calling you this or next week about the LTV 1100 and settings . Thanks so much for all your help, Debcarp

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Sun Oct 02, 2016 6:21 pm

Dr.Bach , my pulmonologist emailed you Friday . I'm anxious for you to talk to her . She's a believer in traches . It seems like Texas is a trach happy state . Thank you for all your help, Deborah Carpenter

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Wed Oct 05, 2016 1:41 am

Dr. Bach , thanks for calling my pulmonologist Marcia Katz back . She said we need to do an overnight stay in hospital to do titration. Do you recommend this ? I can't tell you how much I appreciate you !!!

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Wed Oct 05, 2016 1:43 am

Dr. Bach , thanks for calling my pulmonologist Marcia Katz back . She said we need to do an overnight stay in hospital to do titration. Do you recommend this ? I can't tell you how much I appreciate you !!!

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby bachjr » Fri Oct 07, 2016 7:32 am

A "titration" is unnecessary. The idea is NOT to titrate away apneas and hypopneas but to rest the muscles during sleep so that you are stronger during the day and to do this you need to use full ventilatory support settings. This is why we never need polysomnogram "sleep studies" for neuromuscular vent users and I consider them a total waste of time after having managed 1500 to 2000 vent users without them. You should also NEVER need a trach tube short of developing throat cancer. You need physicians who are interested in learning noninvasive ventilatory support (NVS) by reading my articles or at least looking at http://www.breatheNVS.com Remember, if someday you are intubated and refuse a trach tube you like many others can be transferred to us for extubation to NVS even if you have no ability to breathe at all. Your local doctors do not seem to know this.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby bachjr » Fri Oct 07, 2016 7:33 am

PS I would be happy to explain it to them but they should read by extubation to NVS articles in Chest and Respiratory Care first.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby bachjr » Fri Oct 07, 2016 7:41 am

The Newport is fine but needs to be set up correctly so that none of the alarms sound, active circuit, volume preset ventilation 750 to 1400 ml, rate 10-12, nonvented nasal interfaces or interface holes covered.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

Debcarp
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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Fri Oct 07, 2016 1:54 pm

Dr. Bach, that's what neuromuscular patients deal with here . You are so far advanced on non invasive breathing it's sad . I wish you were my dr. !! I know more about settings on the ventilator than the respiratory therapists do tat come to set it up . So I'd like to go ahead and get the LTV 1100 and set it the way you say . Do you want the blood gas done before I start using the LTV or during ? Also they used to use a spirometer to check lung function . Now its very rare to find a dr. or clinic that has one , and they don't really see the use of it . I have an appointment with Dr. Katz and she said we'll discuss it then . I'll let you know how it goes . You are a true Godsend , thanks for everything and being willing to be available to help us . Thanks , DebCarp

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Re: Dr. Bach desperate need for recomendation of best ventilator for me

Postby Debcarp » Fri Oct 07, 2016 1:55 pm

Dr. Bach, that's what neuromuscular patients deal with here . You are so far advanced on non invasive breathing it's sad . I wish you were my dr. !! I know more about settings on the ventilator than the respiratory therapists do tat come to set it up . So I'd like to go ahead and get the LTV 1100 and set it the way you say . Do you want the blood gas done before I start using the LTV or during ? Also they used to use a spirometer to check lung function . Now its very rare to find a dr. or clinic that has one , and they don't really see the use of it . I have an appointment with Dr. Katz and she said we'll discuss it then . I'll let you know how it goes . You are a true Godsend , thanks for everything and being willing to be available to help us . Thanks , DebCarp


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