oxygen, no bi-pap

[10steps]

Anybody know about using O2(2ml) without bipap for ALS? I've done plenty of reading and research and everything pretty much says no O2 unless there is another lung problem or a low flow o2 may be used with bipap.

Apparently when our hospice nurse called the clinic about it the pulmonologist said yes, they order oxygen without bipap all the time. With everyone playing "telephone" I'm worried someone didn't listen or misunderstood....no bipap... since the original order was O2 with bipap.

Anyone have experience with this? My husband doesn't have any other health issues except ALS so it sounds odd. More importantly he's having real respiiratory issues(ALS related) and the hospice on call nurse told me to give him oxygen but she was driving in her car and was unfamiliar with our particular case until she could get to the office and look at the file.

I've also read that O2 could be used for pallitive care but the hospice agency never mentioned that was the intent.

 

[Sequoia]

Doesnt sound right to me....bipap helps by pushing air into the lungs which is the function of the diaphragm muscle....hope you can get someone who really knows about ALS....do you go to an ALS clinic?

 

[caldona]

I was told never use oxygen unless you use it with BiPAP and then only if necessary because you build up too much 02 in your lungs and it can kill you regular doctors and nurses do not know this I have told both nurses and doctors. When getting your BiPap Machine request the s/t model ONLY if you quit breathing it will push air into you. If your lungs get real weak you may need this. I am in the process of getting one of these at least I hope Medicare approves it but we don't know because I already have one of the other ones my oxygen machine hooks into it I have had to use it once for about one hour.

 

[10steps]

Yes, apparently this was from the ALS clinic pulmonologist. I was suspicious and questioned the order as did our hospice nurse. She was also concerned. I want to point out the order was with bipap but my husband cannot use bipap which is why I wanted to make sure the doctor knew he does not use bipap even though we have one, cannot tolerate any mask or pillows with chin strap and that he would need a nasal cannula to administer oxygen.
Once again I believe there was a lot of "telephone" and I know how easily information gets lost or distorted. I questioned this earlier this week (again) and was assured this was ordered. I haven't given he oxygen as i don't trust the order.

 

[caldona]

The lady that brought both my bipap and oxygen machine the same day said if I kept my oxygen machine on one or two it should be okay my machine never has to be refilled I don't know the difference she also knew about als not using oxygen unless necessary she had other patients before me. I would question this medical people don't always know about als.

 

[trfogey]

What problems does your husband have with the BiPAP? Very few masks (especially nasal pillows) that I've seen have a chin strap, so that shouldn't be a problem.

If he truly cannot use (as opposed to will not use or has trouble using), then you may be at the "vent/no-vent" critical decision point, with all of the related consequences fully in play. Do you know what his preferences are, should he become unable to make that call? Does he know that he's at the stage of progression where that decision has to be made and can no longer be put off?

If, on the other hand, your husband has been "putting off" the use of the BiPAP for whatever reason, he has now had a taste of what his refusal will eventually lead to. The quickest way to solve his current problems may be simply to start using the BiPAP 24/7 for as long as it takes to relieve his current symptoms. Supplemental O2 can be added as necessary, as his ALS clinic has prescribed.

Finally, whether you and he realize it or not, your husband's non-compliance with the prescribed BiPAP regime makes it look like he has given up and is ready for nature to take its course with no further intervention. Is that the case with your husband? If so, it is entirely appropriate to order O2 without a BiPAP for an ALS patient as a palliative measure for someone who refuses all other means of respiratory support. In this case, palliative is used in the "comfort" sense in that the O2 will relieve the distressing symptoms of air hunger in the short term, while presenting the actual risk of shortening the patient's remaining time.

These are some things the two of you need to clarify between the two of you so that you can inform your medical advisors, which enables those medical advisors to give you the appropriate advice, support, and supplies.

Good luck.

 

[Danijela]

Can I suggest he tries Sleep Weaver mask, if he is unable to tolerate any other mask. Dani

 

[caldona]

I would not like a chin strap, mine goes over my head down to the back of my head and the strap comes around under my ears to my mask. Not even close to my chin.

 

[grandmommyk]

Our experience is different since Rick is not having severe respiratory problems although his breathing is very compromised. Years ago, I read that people with ALS should not use O2 because the brain would sense the O2 and tell the diaphragm not to work as hard. That would cause the diaphragm to get weaker and possibly cause respiratory failure sooner. Later I was told just the opposite, that the brain would sense the O2 and cause the patient to be more comfortable, that it would not cause the diaphragm to become weaker.

My husband cannot tolerate the bipap either. We have tried a gazillion masks. He can only keep it on a short time. He has a very deviated septum from a broken nose in earlier years. I have wondered if this is one of the problems but he also seems to be claustrophobic with the mask. He can use the nasal pillows for a short while but will absolutely not have the chin strap. He has used O2 off and on at night for years. It is set on 2. I tease him and tell him that I need him to use it at night. When he doesn't, it seems that I can never do anything right the next day.
Even with the O2, he often yanks it off of his face within a couple of hours. I don't know why it seems to bother him so much. His sister recently had surgery. When she came out of recovery, they had O2 on her, and she was doing the same thing. Her husband said she has never been able to stay on O2 without trying to pull it off.

 

[10steps]

Thanks everyone for posting.
My husband is severely claustophobic which is why he hasn't been able to tolerate bipap. A panic attack isn't helpful.
I've sorted out the O2. My husband is in the "advanced" stages and basically the low flow wouldn't harm him and can be used for comfort, although he doesn't find the O2 comforting LOL.
He actually tried the bipap again lasted two minutes, i took it off him, put it back on 2 minutes and he was panicing...even with ativan.
He's in the "wants to live but not like this" boat. No, tfroggy he doesn't have long especially since these last symptoms showed.
Anyway thought I'd let folks know how things shook out as it may help someone else.

 

[notme]

HI

What type of mask is he using for the bipap? The pillows might work--as they don't really close off anything. They are pretty similar to the way the nasal cannula he uses for O2 would feel. I had some trouble with the mask, too--as suffocating is one of my worst nightmares. I was able to adjust to it--but can certainly understand not wanting to use it.

 

[Katie C]

You might see if they can change his anxiety meds too. Ativan actually made Glen's anxiety worse.

 

[10steps]

thanks everyone for your thoughts. My husband is almost done with his suffering. I couldn't clear the secretions and his chest is too heavy to breathe well. he requested the morhine and he is resting comfortablely. we have wonderful friends and family. Hospice has been awesome. in the end, he doesn't like the O2 anyway.

 

[Katie C]

So glad the morphine is doing its job

 

[momap53]

So sorry he's been suffering. I hope the morphine will continue to keep him comfortable.