Proper Ventilation-External Oxygen

[Shane the Pain]

Hi ALS family,

I have been on a breathing machine for about two years now, it is within the last year that it has been 24/7. One of the therapies I tried was hyperbaric treatment. I learned that if I was rich enough I would of had my own, wonder what Michael Jackson did with his. It improved energy, appetite, attitude and it gave me a real boost. So I started myself on external oxygen supplement and have learned that it is quite beneficial. It helps with lack of energy, it makes things that you are doing a little easier, like getting a feeding or being transferred etc,. I have also learned that you need to continue to increase the pressure on your breathing machine, making sure your lungs are getting fully inflated. Keep on breathin brother !

Shane the Pain

 

[brooksea]

Can you explain your set-up for the oxygen supplement?

 

[Shane the Pain]

Hi Brooksea,

Yeah I guess I didn't explain it to well.....

I have a Res Med VPAP ST as well their newer model the Stellar 100.
The Stellar 100 has a connection in the back of the machine that allows you to connect
supplemental oxygen directly to the machine. This machine is nice because it allows you
to add and remove oxygen without interruption. The VPAP I have to use an inverter to hook
to the mask when adding or removing the oxygen.

I now go through about 10 oxygen tanks per week and use an oxygenator every night.
I have found using supplemental has improved my condition. I strongly encourage any ALS
patient that needs a breathing machine 24/7 to be using supplemental oxygen as well.

Brooksea you can send me a private message if you like, as that sends a notice to my email and I check my email everyday but I don't always log onto the forum.

All the best,
Shane the Pain

 

[notme]

I rarely have to use my portable tanks at all (other than in the car) as I have a visionAire machine at home that makes it's own O2--and it hooks up to the c-pap and to the new bi-pap as well (with a connector)

The hazard, as a few pointed out, is that o2 isn't recommended for MND. As I've said before--as an "undiagnosed" I do feel better when I wear the O2.

On a hypoxic drive (rather than an oxygen drive) too much oxygen can actually cause respiratory failure. CJ. So, be sure your doc says it's ok to add the O2.

 

[brooksea]

notme, Thanks for your concern. I know about the dangers of supplemental oxygen for pALS and even have it spelled out on an emergency card for my husband. I was just curious about how one would go about it and wanted to ask about it at the next clinic visit. Once again, thanks!

Shane, thank you for your set up overview. That explained it very well.

 

[notme]

HI

One thing Allen taught me is to make sure that when I post--I think of the person that reads a year down the road--I know you knew, hon. You know more than I'll ever know

 

[Atsugi]

I've just been introduced to the idea that too much oxygen can make it worse. Thanks.

 

[notme]

Mike, that's why if a PAL is on O2, it's usually kept pretty low. 2lpm is the norm, I believe.

I hope today something good happens in your family. You all need the break.

 

[Atsugi]

Indeed, notme. I slept from breakfast until noon. Now I've taken a seat next to Krissy's bed. She's asked me to tell her stories about my life before we met.

On the morphine, her voice is absolutely unintelligible. But at least she doesn't feel like she's fighting for breath.

Both my kids are in the room watching Doctor Who on BBC America. Our favorite. Waiting for Grub Taxi to deliver Quiznos.

I'll post updates in the Caregiver section under the Update on PALS Krissy thread.

 

[epkennedy]

Indeed, notme. I slept from breakfast until noon. Now I've taken a seat next to Krissy's bed. She's asked me to tell her stories about my life before we met.

On the morphine, her voice is absolutely unintelligible. But at least she doesn't feel like she's fighting for breath.

Both my kids are in the room watching Doctor Who on BBC America. Our favorite. Waiting for Grub Taxi to deliver Quiznos.

I'll post updates in the Caregiver section under the Update on PALS Krissy thread.

Doc Who is watched in our house too. this grub taxi is d'bomb! Stories from before you met? I do hope you are going easy on her. Hee hee

 

[Shane the Pain]

Hi Ya'll,

I would say the oxygen therapy I have been giving myself has indeed helped.
These are small things, but big if you are in this condition. I have noticed the following improvements: When we have to take a mask off for whatever reason cleaning etc. I am able to have the mask and air off me longer, I am not panicked for air like I was, it is my opinion that it also helps with the fluid in my lungs, making it easier to spit it out, I also have more energy than I did before. I strongly encourage others to try adding supplemental oxygen to see if it helps you, it is also covered by Medicare.

On a more fun note, a few weeks ago I had so much fluid in my lungs that I could barely breathe. The fluid was coming out but then at one point my breathing machine could no longer push the air hard enough into me. We quickly got my cough machine to work and used it to blow air into my lungs. This went on for over an hour and finally with morphine and pills I got to a point to where I could go back on my breathing machine. The tech had come out during the incident and upped the pressure on my machine. But the cough machine was able to use more force to blow air into me and past the fluid, it was not fun but I am still here because my wife and caregivers have a brain !

Love to all,
Shane the Pain