update...

[MarciaA]

It's been so long since I've posted...so long that when I glanced through the various recent postings, there were so many new names that I don't know...but I know there may be some of you out there who might remember me. My sister, Kathy, was diagnosed in Feb of 2006. She now has a home health care person who is with her during the day. She can't transfer without the hoyer lift or her new device that she calls her "Barbie stand" (no offense Barb! ). She started using a Bi-PAP at night about a week ago...breathing percentage down to 47%. She wasn't real satisfied with it right away...puffed out her cheeks by morning and dried out her mouth something fierce. They were going to look into the settings on it and perhaps look at how well the mask fits her. Any advice about it? Next week Tuesday (Nov 27) she has surgery to put in a feeding tube. She can still chew and swallow, but is having it put in now before her breathing gets worse. For a while she wasn't going to get the tube at all...at least now she'll be able to use it if she wants to...

This whole ALS ride is going far too fast for my liking! I'd like a refund, please! I was hoping for a more gentle, slow-paced ride that went on, and on, and on...

Guess not.

It would be great to hear from those of you that helped me so much over these last 2 years! You are all in my thoughts and prayers!

Marcia

 

[Al]

Hi Marcia. I'm still here and remember you and Kathy. Good to hear from you. Is there a humidifier on her Bipap? Try turning it up if there is one and if not ask if she can get one with it. I use a Chap Stick to grease up the lips before bed and this helps with the dry's. I'd think the settings need adjusting and it wouldn't hurt to check on mask fit. They usually fit them while you are in a chair and your face does change shape when you lie down especially if you sleep on your side.
AL.

 

[MarciaA]

Al,

Great to hear from you! Yes, there's a humidifier on her Bipap...they turned it up once but the moisture collected in the tube (or on the mask...not sure) and dripped on her face...not pleasant! They were going to call and get someone to come to their house to check it out. Her husband tried it on and could feel the air pressure expanding his chest...Kathy doesn't feel this when she wears it. Is that a pressure thing, a mask fit thing, or something else?

Marcia

 

[Al]

She may not feel the chest expansion because of loss of the muscles around the lungs. Does the mask leak? The humidifier may need changing now that the heating season has started but it should not have water in the tube or mask.
AL.

 

[CindyM]

Hi Marcia- I hope we will still be of some help to you and Kathy. I am kind of new around here myself- I think I joined last October of 06. It is nice to knwo some of our long-time Pals and Cals are still with us, though I am sorry that the ride is so rough! Cindy