Cough assist

[affected]

These are almost unknown for ALS in Australia.

I have a friend PALS who needs one and they are being told that you must have diaphragm strength and they are only a very short term solution. The PALS is having some distressing episodes where he cannot cough and I'm unable to get any help.

Would those who are using them please tell me if they are successful without any diaphragm strength?

They are looking at a Phillips cough assist e70.

Can anyone advise if they know this brand or if there is anything they should look at when purchasing one?

Thanks so much they are feeling quite distressed.

 

[lgelb]

Hi Tillie, I've attached the clinical case for the E70. It is pretty much the same as the T70 except for the oscillation feature that the E has, so if both are available to your friend, I would go with the E (technically the T is the version in the US, but markets can overlap these days).

I also have the clinical manual if needed down the road.

I don't see any reason why it shouldn't be tried for your friend, though of course it would be wiser to try/rent before buying if possible. If the physician is warning that it won't replace a vent, that's true, but it can also be seen as more palliative, which is how you posed it.

The diaphragm comes into play with inspiration, so if there isn't any musculature to assist the BiPAP in getting/retaining air into the airway, ultimately the PALS would be faced with the choice of invasive ventilation. I would also encourage reading Dr. John Bach's Web site/writings if s/he is trying to maintain on NIV, which may be applicable in your friend's case.

Best,
Laurie

 

[affected]

Thank you Laurie I've been trying to get help on this for days. I had kind of forgotten how desperate it feels.

The doctors are not involved, it is not used in Australia as a rule, she is just desperate to help her PALS.

Others in Australia with little or no experience are now advising, but I will copy and paste what you have written and pass on the attachment. Thanks again.

 

[azgirl]

I could not do without the cough assist. I have used it twice a day for well over a year and it helps tremendously in bringing up what my weak cough cannot.

it is especially helpful now in late stage for pulling out that thick, gross, phlegm.

not sure what brand I have but will check

 

[GregK]

I don't track my NIP/MEP but my fvc%e is <30%.

I now find the cough assist indispensable.

 

[azgirl]

Phillips Resperonics cough assist 70

this is my machine

 

[KateEmerson]

My husband was in respiritory failure, trached and vent dependent from day one so I'm making the assumption that he did not have sufficient diaphragm strength to even breathe let alone cough to clear his lungs of secretions. I truly believe that he would not have lived those 4 years without the cough assist. We did not use it the first seven months and had numerous lung infections/pneumonias, once we started using it 3-4 times a day he only had one lung infection treated at home. We had the Philips Respironics T70.

 

[JimInVA]

Darcey has minimal ability to cough. The cough assist has saved her more than once. We don't go far without having near.

Jim

 

[Kathy K]

i use a phillips respironics t70. I can't initiate a breath so we use manual mode.

 

[affected]

thank you all so much, those extra descriptions of how much it helps are invaluable

 

[tripete]

i am unable to use it because no matter the setting it feels like it is ripping my guts out.

 

[Narrowminded]

Tillie, Brian also that’s the T70 and we use it regularly and as you know he’s been vented close to 8 years now. I know he has zero diaphragm. It does a great job of getting the gunk loose and up to where it can be auctioned if not all the way out.

Hugs,

Sue

 

[flowerpower]

I love cough assist. Twice a day I do three rounds of three breaths, with suctioning in between rounds. I KNOW it has absolutely saved me several times when I was in respiratory distress, and regular suctioning was not doing anything. I have experienced the bad scenario of not being able to clear secretions, getting a plug in my airway, and flat lining before I had the trach, and I know what it feels like to come close to losing consciousness since. I credit cough assist (T70) for getting me out the woods many times. I rarely have those situations in between uses now that regular suctioning can't deal with. I definitely don't think of it as just a short term solution 1., and 2. I think I speak for most, if not all, PALS enduring the daily reality of living with this brutal condition - LET US TRY!
I do cough assist when I wake up and before I go to bed, I also find it opens up my lungs, I always feel better afterwards.

Tillie, I hope you and your PALS get a positive result!

 

[notBrad]

The thing I love about mine is getting the huge inhale I get before the exhale, feels good man.

 

[flowerpower]

It does feel great getting those big deep breaths!

Tillie, I'm thinking of your friend. The peace of mind I have from just knowing the machine is available and ready to go is huge! I'm hoping your friend gets something that will do the same for them. Thank goodness for advocates like you!