Oxygen and ALS

[Nuts]

I've read that ALS patients should not receive oxygen. Is this dependent on the stage of the disease? Hubby's FVC was 64 at his last clinic appt. He had surgery this morning and now his oxygen levels drop when he pushes the button for pain meds. The nurses mentioned oxygen and when I asked about problems with ALS and oxygen I got blank stares. Am I worrying about this too early?

 

[gooseberry]

No. ALS patients need to be treated like CO2 retainers. They need ventilation for the most part. Occasionally they will get oxygen but only in very rare cirumstances. Most medical personnel have no idea what to do for als patients. I have been told to either ask for an als treating neurologist or a pulmonologist and say the bit about him being a co2 retainer.

 

[affected]

You need to get them to bring in a BiPap machine. He doesn't need oxygen, it is dangerous and they can stare blankly all they like.

Get onto your neurologist if they won't listen.

Giving oxygen tricks a PALS into breathing even more shallowly, therefore expelling even less CO2, that's why it is dangerous.

A really common thing when there is pain, is that it may hurt to breath, therefore he may be hesitant to breath deeply. This mean that giving him oxygen now will only encourage him to breath very little.

 

[gooseberry]

Thanks Tillie for the explanation. No one has explained it clearly like that to us!

 

[Schmidhogan]

Yes, thank you. I'm getting a tummy tube tomorrow (more on this later). Received a call from the preop nurse. I said I would bring my bipap breather, she said "do you mean C pap?". Guess I don't expect a nurse in her position to know this stuff but I hope the docs there do. Expect my O2 will go down when I'm lying prone during the procedure and I don't think I should be pumped full of O2 for the above reasons.

 

[affected]

Schmid do take your own bipap and insist it is used. They kindly offered to have a CPap machine on hand for Chris when he had his peg put in. When I said great that is such a great idea but can it please be BPap they went all vague and mumbling and blank ...

 

[GregK]

At what point does this become a concern? Anyone who has come to the point of needing mechanical assist, or is there some other baseline (FVC,etc.)?

 

[gooseberry]

My husbands fvc is less than 20% and he doesnt get any oxygen. He uses the trilogy at night cough assist during the day to open his lungs up. He has a portable/wheelchair version of a trilogy coming tomorrow for when we go out since he needs some breathing help from time to time.

 

[affected]

Not sure exactly what you are asking Greg, but I'll take a stab.

If you mean at what point is it a concern when having a procedure like a peg, then usually they want your FVC to be above 50% because of the anaesthetic.
If lower they can do it radiologically guided with no anaesthetic.

For Chris, actually the biggest fear was that they would lay him flat on his back and shove a guard in his mouth. His breathing back then was OK, but he could not lay flat or his palate would close his throat off (palsy of the palate due to ALS), and anything touching inside his mouth would cause clonus, jaw clamping and saliva to go wild. Because his speech was almost unable to be understood by anyone, that added to the fear that he couldn't even do anything about it.

The anaesthetist we had was so wonderful. He patiently listened to my explain the bulbar issues above, and talked his side of things through with us and we all agreed on a strategy that Chris would be comfortable with and that would allow the anaesthetist to do what he needed. He was gentle and kind and and it went fine. After the procedure before we left Chris cried and thanked him he was so relieved.

They let me back in as soon as he came out of the procedure and was still asleep, and of course they had oxygen mask on his face ... I didn't panic and say OMG get that out. He was coming around within a couple of minutes and as soon as he stirred he tried to get the mask away and I just removed it.

If someone is already using bipap, I think they need to take it with them so that they know that if anything happens breathing-wise they have their own machine with the right settings there with them.

Even if they had a spare bipap in the hospital, they would not have had a clue what settings to give Chris as he wasn't using one (he never did, he finally asked for bipap 2 weeks before he passed, but it was too late then).

Not sure if that just became a rambling rather than an answer lol

 

[GregK]

That was very useful info. Not exact what I was asking but something important regardless.

Specifically at what point does giving O2 to an als patient become an issue?

 

[Atsugi]

Don't know if this helps, because I don't know your PALS total condition.

We're told to avoid continuous oxygen for most of their progression, but there comes a point at which their paralyzed chest muscles make it impossible to take a deep breath. Then, they can experience air hunger, which is incredibly uncomfortable to the max.

When my PALS was bedridden and on hospice care at home, we gave her oxygen as desired. She knew she was dying and understood fully what she was doing. Don't know if it sped up her already rapid progression, but then, I suppose she didn't see any difference between dying in August and dying in September.

 

[Nuts]

What wonderful information we get here I emailed my husbands ALS doc (a wonderful man who responded quickly) and he assured me that at this early stage short term use of oxygen would be ok. Sometimes I think my worries project greater progression on him than he is experiencing. They gave him some oxygen for a short period, before changing his pain medication (which seems to have helped on several fronts). There is just so much to learn...

 

[JimInVA]

Just to add some information...

My PALS (Darcey) just had a normal endoscopic PEG insertion with her FVC at 31%. During this procedure, I had to explain to them the importance of her using the Trilogy in BiPAP mode. They wanted to use 02 only... and I wouldn't allow it. So they agreed to the Nasal Pillows with BiPAP and said that they would trickle O2 through her open mouth (I did not try to explain that she would be breathing only through her nose).

Because of Darcey's low respiratory ability, flushing her body of the anesthesia to longer than for normal breathers. Her respiration was also affected and was low (in addition to lower BP and Pulse). Darcey had pain. They wanted to treat the pain but had to strike a balance between giving her relief and keeping her respiration from falling too much lower. Apparently, pain meds given via IV can have a significant lowering affect on respiration. So for Darcey, they only gave her a smidgen of those meds while constantly monitoring her vitals. The pain meds then lowered the pain from an 8 of 10 to a 5 of 10 (her scale)... but she became dizzy, light-headed and began to sweat. They countered this with IV fluids. It is a pretty amazing dance they do in the short period between surgery and release (to head home). I hope our experience helps add to the conversation and information being presented...

Jim

 

[affected]

hey Greg,

the thing with giving oxygen really is about how long it is going to be given for as to whether it is going to more harm than good.

So when Chris woke from the peg surgery and they had a mask on him, I did not worry at all, because I knew he had only had it on a few minutes and would only have it on for a few minutes more. If they had started saying they wanted him on oxygen for the next few hours or all day I would have said no way.

When he had pneumonia they had the little nasal prongs sitting just under his nose with oxygen. I did not mind, I knew he was nearing end stage and he would go into some oxygen distress and it was more important now to keep him comfortable. (he passed 3 weeks later)
After the first day in hospital I encouraged him to use the nasal prongs as little as possible and only for real air hunger.

So, I would say the measuring tool is -

if you are palliative (in or nearing the end stage and comfort is the only goal) then a little oxygen is fine to prevent air hunger.

if you are living with ALS - you need cough assist and bipap, as the goal must always be to increase the expulsion of CO2 which is the biggest danger to a PALS.

Hope I got the answer out this time, I know I got more rambling out lol

 

[GregK]

thanky lass! 8)