Traveling to a Center for Noninvasive Respiratory Management

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BongoRobo
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Diagnosis: Duchenne Muscular Dystrophy
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Traveling to a Center for Noninvasive Respiratory Management

Postby BongoRobo » Mon Jan 04, 2016 9:54 pm

I am a 23 year old man with DMD. I have a trach and require complete breating support from a ventilator. I currently live a nursing home in New York and the closest Center for Noninvasive Respiratory Management is in Newark, NJ. I looking for advice on traveling to the center for decanulation because traveling with a trach seems like a daunting task. What would be the easiest way to get to the center?

pgimbel
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Diagnosis: Duchenne Muscular Dystrophy
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Re: Traveling to a Center for Noninvasive Respiratory Management

Postby pgimbel » Tue Jan 05, 2016 2:24 pm

Where in New York are you? Does the nursing home provide any transportation?

BongoRobo
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Joined: Mon Jan 04, 2016 9:33 pm
Diagnosis: Duchenne Muscular Dystrophy
Diagnosed: 1997
City: Glen Oaks
State or Province: New York
Country: United States

Re: Traveling to a Center for Noninvasive Respiratory Management

Postby BongoRobo » Tue Jan 05, 2016 4:42 pm

I'm in Long Island New York and any transportation will most likely would have to be payed for by me and my family. They are saying my insurance wouldn't cover it.

pgimbel
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Joined: Wed Nov 25, 2015 4:36 pm
Diagnosis: Duchenne Muscular Dystrophy
Diagnosed: 1988
City: Scarsdale
State or Province: New York
Country: United States

Re: Traveling to a Center for Noninvasive Respiratory Management

Postby pgimbel » Tue Jan 05, 2016 6:11 pm

My suggestion is to travel with at least 1 extra person besides the driver, so someone can help you if you have a problem. I would also make sure there is nowhere closer you can go. The Neuromuscular Clinic at Columbia Presbyterian might be worth contacting.

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bachjr
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Re: Traveling to a Center for Noninvasive Respiratory Management

Postby bachjr » Tue Jan 05, 2016 6:30 pm

Unfortunately, no physicians at Columbia Presbyterian will remove trach tubes of a patient who dependent on a ventilator. I recommend that come to the Newark, NJ center (as you mentioned), since it is currently the only center in the United States who will remove the trach tube of any vent user.

Only centers listed here are capable on noninvasive respiratory management: http://www.breathenvs.com/#!centers-for-noninvasive-management/ihfvz

Also, we will put you in touch with other 24-hour vent-dependent users with Duchenne of whose trachs we have removed.

JB
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

pgimbel
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Posts: 5
Joined: Wed Nov 25, 2015 4:36 pm
Diagnosis: Duchenne Muscular Dystrophy
Diagnosed: 1988
City: Scarsdale
State or Province: New York
Country: United States

Re: Traveling to a Center for Noninvasive Respiratory Management

Postby pgimbel » Tue Apr 05, 2016 2:17 pm

Was this situation resolved?


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