First visit to a Pulmonologist in a few days

[Mary2]

From my point of view, 2 of the tests will be used to justify to Medicare the need for a bi-pap and the other tests can maybe be used to create a letter of medical necessity to Medicare if the first 2 two tests don't quite meet the threshold. As far as how these tests impact clinical management otherwise is a mystery to me.

 

[affected]

MIP and MEP are valuable - they test the strength of the muscles used for breathing. Unlike tests for your lungs as such.

Once you get a bipap ordered, the best test is how you feel. Some PALS function quite well with low FVC while others don't. If you have a bipap, then if you don't feel energetic, or feel your breathing is laboured or whatever, you use your bipap.

 

[Tomswife]

I hope if we get a bipap Tom's energy will improve. He sleeps all day. He has very little energy or interest.

 

[KimT]

I'm certain he will be more comfortable. If he is sleeping all day and has little interest in anything, please discuss with your doctor. He may need some med to help him feel better. I know Remeron was like a magic pill for me. I couldn't handle this diagnosis without it. I'd never leave the bed.

If Tom has compromised breathing, a BiPap will improve many areas of his life.

 

[lgelb]

PFTs generally don't affect management as stated. They are for justifying reimbursement in conjunction with the diagnosis. Occasionally they (and medical history can as well) point to some other lung condition that doesn't change the need for BiPAP in ALS, but influences settings.

 

[Tomswife]

Hi. The pulmonologist has ordered a Resmed Air Curve 10.

Is this a CPAP? Is this the right device for ALS bulbar and respiratory weakness?

Thanks
Kathy

 

[MupstateNY]

I don't think it's a cpap because google tells me it's bilevel.

 

[lgelb]

There are multiple flavors of it. The one Tom needs is the AirCurve ST-A. Make sure that was specified. Note this is not portable -- it requires AC power. You could buy an external battery kit for it if trips are short and infrequent.

The portable version would be the Astral.

 

[swalker]

I have the Resmed Astral 150 and am very happy with it. I highly recommend it to anyone getting a "bipap" (non invasive ventilation device). I use it between 10 and 16 hours a day. I can no longer lie flat without using the Astral 150.

The Astral 150 has an internal battery that is rated for about 6 hours of operation. I also have two external Resmed batteries that are good for another 8 hours each. That comfortably gives me over 20 hours of use, which is a great comfort living in a place where we occasionally get power outages.

It also makes it very convenient for taking longer trips.

The Astral 150 can also work off of 12 volts, such as found in a car or single wheelchair lead acid battery. It requires a separate adapter to do this, and I found a new, original resmed adapter on ebay.

When my wheelchair batteries are at end of life for wheelchair use, they actually have a lot of life left in them for other purposes, such as powering the Astral 150. I always keep a pair of these old wheelchair batteries and have then connected to a maintenance charger. This assures me that I have many hours of battery power available for the Astral 150.

We also have a small, portable, gas-powered generator. If power goes out for longer than I am willing to rely on batteries, we could always fire up the generator.

We have thoroughly tested all of this with the Astral 150 and have found that this setup works very well.

Steve

 

[Tomswife]

Thanks! The mdevice firm is coming friday. It is interesting that there have been no discussions with us. I only know what was ordered because i called and asked. I will let them come and talk to them at that time.
We do lose power.

 

[Mary2]

If I had the energy, and had a second wind, I might call the medical device company tomorrow and try and ask what are they are bringing, so I could state my case for the Astral 150. Maybe someone at the company will take an interest and call the pulmonologist for an order for the Astral 150.

 

[Mary2]

Of course, if you go on hospice, you might have to change machines anyway.

 

[Tomswife]

Yes. I was advised by palliative care team to just let device come. Because we probably have to use hospice device. And. We dont know if Tom will want device. My guess is he will try it but want it removed. A guess.

 

[lgelb]

You should NOT have to change machines on hospice. That has not generally been the case here, and shouldn't be the case for anyone. I would challenge or reject any agency that said that. They don't have to only work with one DME. It's just habit, like so many business relationships.

Any AirCurve will help, palliatively or otherwise. It's just that the ST-A can help the most. But, any machine, I can help you make it work for Tom.

 

[Tomswife]

Good advice. I will make sure we can use the best equipment. Since they hospice all want $ I can just tell them its a deal breaker. The mdevice firm can support settings.