Bi-Pap and Oxygen? Altitude change?

[MLOx]

Hi all, my mom has ALS bulbar onset. She moved to Colorado Springs a few weeks ago, has been on bi-pap for several months. The ALS clinic is in Denver --so we went to a local Pulmonary doc in town --he had her take a blood gas test and oxygen test. Her co2 is slightly elevated and oxygen in in the mid 80's he recommended oxygen. My mom had been told by the ALS clinic in Phoenix that they wouldn't recommend oxygen. This Colorado doc said yes, in phoenix but in Colorado not the case.....any thoughts? How many folks do oxygen? Just at night or just with the bi-pap? Only if she continues to go in and get her blood gas monitored? what if it goes up (I'm guessing the disease process it will)?

Also, any neuro in Colorado springs you can recommend?

Thanks in advance, Monica

 

[Danijela]

Hi Monica,

there were few people around here who have used O2 with Bipap. I think the concentration needs to be low because the bigger problem (and the killer) is Co2, that the body is struggling to blow out. I am guessing that in correct ratio, and with appropriate monitoring, O2 is an option. From what I know O2 in mid 80s is low, the aim is mid 90s, or at least above 90.

Hope others come forward. Dani

 

[MLOx]

THanks for your feed back Danijela, I talked to the nurse at the pulmunary clinic, they didn't seem to understand or speak in a way that indicated that they/she realizes the issue is muscle weakness not oxygen intake --she just kept saying her oxygen is low so they perscribed oxygen, she seemed annoyed that I would question it.

I found this chapter on it really helpful http://www.alsa.org/assets/pdfs/brochures/alsa_manual6.pdf

Oxygen doesn't help the muscle weakness--but maybe it would feel more comfortable and as you noted as long as it is low...interesting they recommended it during the day without the bi-pap, which to me is weird because you would want to make sure the oxygen going in can get out in the form of co2....she only does bi-pap at night, just talked to her husband and disucssed using it during the day until I get more info.

 

[caldona]

My oxygen is the kind that a tank is never refilled I was told not to use the type that has to be refilled. I don't know what anyone else has been told

 

[pmbenb83]

My husband is on oxygen 4 liters along with his BiPap. It doesn't really help him without the BiPap. When his O2 dropped below 90, he had pneumonia. The first time the ER sent him home thinking it was just his ALS and did not do an x-ray. That evening we needed an ambulance to take him back to the ER where the x-ray showed pneumonia. Hopefully, the docs are keeping pneumonia in mind as a possibility.

This past Friday, the medical supply person delivering a new oxygen machine told us my husband's order was for 6 liters. I didn't feel comfortable with this change from 3 liters to 6 liters, but my husband said he wanted to try it. The next day he could barely stay awake. We backed it down to 4 liters and now he's feeling more like himself again. I think they meant he could go up to 6 liters if needed. Too much oxygen is definitely NOT a good thing. It is great that you are aware of the CO2 build up even if the docs don't understand. It scares me when doctors just don't get it and we have to educate them.

I hope they find the right combination for your mom so her breathing feels better!

 

[BrianD]

Monica,

I am not a doctor so do not take this as gospel. I live in Colorado Springs.

From my understanding, a little bit of oxygen may help in this case perhaps short term because the air out here is thinner and her body has not yet adjusted to the altitude change. That usually takes a few months for the body to generate a higher concentration of red blood cells. However, that isn't going to help with the inadequate air volume to get rid of the CO2.

Have you been able to see the neuros at University Hospital? I know from experience it is an inconvenience to drive up there, but they do know the most about ALS. However, if you are really wanting a local neuro, look into Dr. T. Drake MacDonald. He accurately diag nosed me, but didn't handle telling me very well. I do find the ALS clinic in Denver helpful to talk to all the experts on one morning. They refer their patients to a pulmonologist at National Jewish Hospital, Dr. Barry Make.

Be sure to get in contact with the Rocky Mountain Chapter ALS Association... those ladies are very helpful. They also provide local monthly support group meetings if interested.

Feel free to PM me for any other local questions. Tell your mom welcome to the neighborhood.

Brian

 

[LizT]

Adding supplemental O2 will trick your body into thinking that you have enough O2...and can lead to respiratory failure. The CO2 level will keep rising...
sounds like the second place you went had NO knowledgle of als or how it works. ITs common. alot of pulmo's put their als patients on O2. yes it can make the patient more comfortable, but it can also speed up breathing issues.
If your mom and you all have accepted what is happening, and are just interested in being as comfy as possible until death occurs, the O2 is OK. if you guys are wanting to prolong life, O2 isnt always a great idea.
My pals was put on O2 automatically when he went on the vent 24/7. Like many pulmo's think- they see a breathing issue and assume O2 is needed. He became dependant on it... mentally anyways.
I would suggest only using it WITH the bipap... but thats just my humble advise.
Hope this helps.

 

[MLOx]

thank you all for your thoughts, advice, and experience. I think it's great to have feedback from the "real world" --I do think the altitude is mainly the issue, since in AZ this wasn't as much as a problem, I talked to the Pulm...doc because I think he was upset I was questioning his recommendation...but given what everone has said, I think she needs to increase her bi-pap machine use and see if that increases her oxygen saturation, if so then problem solved....if necessary use the oxygen but only with the bi-pap (as noted above that seems what everyone is saying) and monitor...and make things as comfortable as possible for my mom. THank you all again...and thanks for the Nuro recommendation.....we have been up to denver at the als clinic with dr. ringel, but i think the trip will be too difficult at this time.

THanks everyone!