It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Muscular Dystrophy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 02-13-2010, 09:41 AM   #1
Senior Member
Madalot's Avatar
Join Date: Mar 2003
Location: Virginia
Posts: 264
Madalot HB User
Breathing Issues -- Update

If you check my last thread on this, you can see where I was.

Since that post, I was given supplemental oxygen through the bipap because of continuing desaturations at night.

A couple weeks ago, I noticed that the bipap machine did not seem to be changing to the inhale pressure 100% of the time. It was really flaky at first, only occurring once or twice before I fell asleep. But it did pose the question that if it was happening before I fell asleep, how often was it happening WHILE I was asleep?

Going back and forth with my DME provider and having numerous problems with them not believing me, we have finally determined that my breathing is too shallow for these machines to recognize that I'm inhaling, thus not switching to the inhale pressure.

A visit to my doctor, along with supporting information from my DME, has resulted in an order being written to switch me to a ventilator. Apparently, my diaphram muscles are weakened enough that I require more sophisticated, and possibly more invasive, help than the regular cpap and bipap machines can provide.

Are we having fun yet?

Sponsors Lightbulb
Old 02-13-2010, 10:34 AM   #2
Senior Member
Join Date: May 2007
Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: Breathing Issues -- Update

Sorry Girl, know that I am thinking about you! It must be really hard, scary, and frustrating! Please know that you are an inspiration to me!


Old 02-13-2010, 11:03 AM   #3
Senior Member
Madalot's Avatar
Join Date: Mar 2003
Location: Virginia
Posts: 264
Madalot HB User
Re: Breathing Issues -- Update

Thanks NP --

I appreciate that. I have to say that I'm really not very happy about this. I've gone, in 10 years time, from being barely disabled and functioning at almost a normal level, to going on a ventilator.

But, being upset and irate isn't going to change it and only make me more miserable. So, I'm choosing to look at the bright side and say that if it helps me breathe better, and get a better night's rest, it will be worth it.

Old 02-15-2010, 07:29 PM   #4
Senior Veteran
michigani's Avatar
Join Date: Dec 2004
Location: Michigan
Posts: 538
michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
Re: Breathing Issues -- Update

I can't imagine. This must be very scary but you seem to be keeping a good attitude about it (as good as possible). I hope the vent works without being too uncomfortable. Maybe it will be like many of the other adjustments we all make.....awkward at first then welcome. I'm getting very frustrated with my house layout and stair situation. I'm at the point where it takes 100% of all the strength I have in me to get up those 13 stairs at night and about 10 minutes. About every third night now my wife or daughter has to help lift my foot up the last 2-3 stairs.

The only reason I bring up my own issue is because I feel yours is more frightening. I feel blessed that my problem is just an inconvenience. I truly hope your new machine helps and brings you comfortable relaxing nights. Like you I try to focus on the good things I family, my friends, etc and I wouldn't trade them ever even for a healthy body.

Hang in there and keep us posted.


Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Hiatal Hernia, GERD and breathing j2006 Hernia 10 04-19-2011 05:49 PM
Breathing Issues with LGMD Madalot Muscular Dystrophy 1 01-08-2010 03:49 PM
Problems with gas ! and breathing Celticmoonx Acid Reflux / GERD 3 04-23-2009 03:57 PM
Breathing issue due to anxiety? Dark Stranger Anxiety 4 05-09-2008 11:26 AM
Breathing issues due to cervical spine PRE surgery.....?? alex12 Spinal Cord Disorders 16 11-09-2007 09:27 PM
Exercise Related Breathing Problems? chirino Lung & Respiratory Disorders / COPD 0 08-09-2007 11:49 AM
Breathing problems and anxiety Bette76 Anxiety 9 12-18-2006 08:23 PM
Update on breathing therapy Munroe High & Low Blood Pressure 5 09-19-2006 10:09 PM
Breathing Issues nervousnight Anxiety 9 09-02-2005 03:52 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:29 AM.

Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2015 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!