Breathing issues prompting move to skilled care facility. We're scared!

[Chincoteaguer]

Laurie and Creg;

"You simply have to be knowledgeable." "Shouldn't have supplemental Oxygen"

I read the linked abstract you referred to, Laurie, or maybe it was the "literature" link. In any event it was clear that the Mayo Clinic agrees with you. The only caveat is that the blurb was dated 1995, 22 years ago.

Greg obviously takes issue with supplemental oxygen based on his personnel experience.

It seems that these two positions are compatible if we subscribed to the idea that each individual reacts differently.

This certainly makes me more knowledgeable. Thank you both.

Ernie

 

[lgelb]

Ernie,

The reason that research is dated 1995 is that no one disputes it any more, thus, no more research. Look at any guideline or paper since... I wanted to show the root of the problem so I picked that abstract. PALS can't process O2 as well as normal people because the whole system that does so, including but not limited to muscles, changes during the disease. That is also one of the reasons why I frequently end up recommending lower pressures/triggers for slower breathing rates than PALS are initially prescribed in BiPAP, depending on circumstances.

Again, Greg is right to point out that in COPD and/or high altitude, ongoing low-flow O2 may be better than not. I did not dispute his personal results.

Best,
Laurie

 

[KateEmerson]

Laurie,

Somehow I missed seeing your post that provided the link to the abstract. Would you please post it again? Thanks, Kate

 

[lgelb]

Here is a fuller discussion
and here is the original abstract
and I have attached a 2000 summary in simpler language by Dr. Tony Oppenheimer, a well-known figure in the ventilation community as Chief of Pulmonary and Critical Care Medicine, Southern California Kaiser Permanente Group, who died in 2005.

 

[lgelb]

Also, I came across this "cheat sheet" for the ER staff by Dr. John Bach, who works extensively in this area. This might be something to bring to any ER or hospital visit.

His list of clinicians he has trained in his methods (he believes most trachs can be avoided with intensive methods that may or may not be practical/desirable for PALS, but the concepts are always worth a look) may also be of interest.

 

[GregK]

Totally agree with Laurie.

The study said this regarding low flow (bolding mine):

Conclusion
In patients with neuromuscular disease and diaphragmatic dysfunction, even low-flow supplemental oxygen should be administered with caution, and assisted ventilation should be strongly considered as an initial intervention.​

Inadequate ventilation (depressed breathing due to weakening diaphragm and auxiliary muscles and/or ignorant use of supplemental O2) is the problem.

The technical term in the studies was hypoventilation.

Proper ventilation, via BiPAP, is the answer.

After reading the study, I will caveat "anyone can handle 2lpm" with "but pALS should also be on NIV".

sorry for the hijack but it's an area of concern and ignorance.

 

[Chincoteaguer]

"Concern and ignorance" are scary terms when dealing with ER situations.

I've copied and saved the important links that you all have provided.

I only hope if the ER situation does arise that I can use the information effectively.

My experience with ER and other doctor's visits is that most folks kind of ignore patient advocates especially if you are a senior citizen and a little rattled to begin with.

 

[KimT]

It might be a good idea to type a short list of things to do and things not to do for ALS.