Shortness of breath

[MF4129]

Hi my mom has bulbar ALS diagnosed 12/2022. She still walks with a walker but can no longer eat or talk. Recently she has felt more SOB and has discussed this with her pulmonologist and als provider, however the SOB is causing her severe anxiety (she went to the ER recently for this). Her pulse ox’s are in the high 90’s. She does not use her trilogy as much as she should. I am wondering if SOB and air hunger are “normal” for her at this stage or if a lot of her symptoms are being driven by anxiety. I hate the thought of her feeling like she is suffocating to death.

My understanding was that at the end of life there is typically CO2 build up, the person becomes very sleepy and may be given morphine at the end to help with any air hunger they experience. I do not think my mother is at the end but I am hoping others will chime in with their experiences. I am hoping to reassure her that a lot of what she is experiencing may be related to her anxiety.

Thanks

 

[lgelb]

Air hunger is inevitable for someone who needs a Trilogy but does not use it enough. Otherwise, air hunger is not "normal" until the beginning of the end and yes, at that point, can be relieved by morphine.

I would try to figure out why she is not using the Trilogy more and address the barriers (let me know if you need mask or settings help to do this; often what is prescribed at what is basically a guess or template is not totally on point), and convey to her that it is the answer for not feeling like she is suffocating. Shortness of breath in ALS that is getting the right amount of machine support (not too much, not too little) does not reduce the pulse ox until the end, if ever.

If the machine isn't being used to conserve the energy that breathing requires as muscles weaken, not only does this compromise breathing, but it creates hyperventilation that only increases the CO2 that is harder and harder to exhale.

It is likely not anxiety that is causing the breathlessness at this stage, though they can reinforce each other, but lack of respiratory support. And the more hours she doesn't use it when she needs to, the more irreversible her air hunger may become.

Best,
Laurie

 

[MF4129]

Thanks for your response. I will ask her to use her trilogy more.