"proactive" BiPAP

[notBrad]

At a diner party this weekend a retired RT suggested that even though I don't "need" one I should get BiPAP anyway as it would be good for me in a proactive manner. Sort of like breath stacking.

Thoughts everyone????

 

[BlueandGold]

If that were the case, I would think all of us would have been given a BiPap at diagnosis. But what do I know. I certainly don't think it would harm you Brad and it might be helpful for you to get "accustomed" to it when you really do need it. I still struggle with mine. ALS sucks!

Vince

 

[Nikki J]

There are people who say just that Vince that we should get the bipap right away. I suspect that getting it before the 50 percent mark would be good. I know when my sister's number first dropped ( they had tested sitting) they told her not to try very hard when they repeated it lying down so she could get bipap covered by insurance. From the point of view of preserving strength it seems to make sense- and to get used to it.

 

[notBrad]

Thanks Vince. I'll do some more digging and see what I can find out.

Hope you're doing well and yeah, als does suck!

Edit: Thanks Nikki!

 

[gooseberry]

They have told Steve that it had stabilized his breathing and the decline had been small. Now though his breathing is declining even though he is using the trilogy 20+ hours a day. His pulmo, who works with a lot of als patients, has said those that use the bipap early on and daily, have maintained their breathing and quality of life for a longer period of time

 

[lgelb]

Brad, since the mindset has been so much waiting until point X, there are not much good data on not waiting, but here is one study that tried 75% as the cutoff.

I agree that starting sooner could help with the proviso that the I/E air flow, duration and interval be comfortable and natural, supporting breathing, not overwhelming it.

 

[texastc]

At our ALS clinic, it was recommended at the first visit to start the bipap. Get used to sleeping with it they said, now, because later when you need it, it will be hard to get used to it and sleep. Tracy got to where she loved it...other than the constant battle with the masks...put it on, her eyes would get veeryy heaavvy...

 

[notBrad]

Thanks all for the info!!! Will definitely pursue it further.

 

[KimT]

Get it!

I'm having a difficult time getting mine. I did a sleep study then could not sleep in the second part of the sleep study. I have to meet with my local pulmonary doctor tomorrow morning to tell him that I don't need a sleep study to qualify! My neuro wrote the Rx. The process started in December and it hasn't even been ordered.

 

[lgelb]

Kim, I'm confused. If your neuro already wrote a rx for it, why are you doing the pulmo stuff?

 

[KimT]

Laurie,
I decided to get a local pulmonary doctor down here who will measure my breathing rather than make the two-hour trip to Jacksonville. I really don't see the point of going to Clinic when I can get my local neuro and local Pulm. docs to write Rx, DME, and prescribe OT, PT, and MT. I went back to him yesterday and he thought they had already ordered the BiPAP. It was just an office mistake. He made sure they ordered it yesterday. The RT should be calling me soon. My local neurologist will also write the Rx for B12 whereas Jacksonville was hesitant. I will not give up entirely on Jacksonville in case a clinical study comes up but I wanted to establish a local team that I can see when necessary. My local neuro also specializes in pain management and I've had a good deal of cramps, spasms, and general pain. He gives me free samples to see if something works.

Some of my local doctors will also do FaceTime visits....which is a blessing for me.

 

[affected]

Great Kim, hopefully it is soon set up.

It was like this for us in some ways. Our clinic was over 3 hours drive away and in another state. So we needed to work with a local team for the day-to-day stuff and we ended up with a great team, even if they weren't all in direct contact with each other, there was enough connection to meet our needs.

 

[chally]

Well now I am confused again! Happens easy on me. I just finished sleep study today and report was I didn't have any real issues w/ blockage and the machine didn't even kick on. So I take this as all good. Second ,at my clinic last week dr said my speech and swallowing was sounding good and didn't see me breathing hard, so this is good too. Third, my numbers from last pulmonary testing were good also and the pulmonologist at va said good numbers and I don't need bipap, so this sounded good to me.
My issues are with my hands- arm- feet- legs and energy levels. So now am I hearing get a bipap now cause you'll need it later?
Love ya and I am confused. Chally

 

[Nikki J]

What you are being told sounds like standard practice Chally. It is unusual what happened that Tracey got it right away if her breathing was fine. Although I have heard people say it should happen I don't know anyone else who got one before some compromise occurred. Is there anyone else here that had that experience?

I have a very proactive neuro but she has not even hinted at that yet. When you start to have issues though I really wonder whether we should wait as long as usually happens.

 

[lgelb]

Chally,

If it's completely good, as in your breathing is normal, I haven't heard any reason to get one.
We are talking about if your SVC or FVC is closer to 75% or so, that the new thinking is to get it then, rather than wait for ~50% as has been advised in the past. Same goes for someone whose FVC might be more than that but is waking w/ headaches and/or feels dizzy, coughing when breathing catches, needing air, etc.

Best,
Laurie