BiPAP Options & Opinions

[kevinw]

Hi Everyone...I just want to check and see if anyone in our situation had any opinions on what the best BiPAP option or kind is? Last week at my last MDA clinic visit they said I need to consider getting one as soon as possible because I guess my Pulmonary Function Test results were "severe" (which doesn't make sense to me with PLS), but anyway they said I sould contact them to start the process. They also said I should get my Advance Directive/Living Will filled out and get them a copy (what the heck, this was just my normal three month visit).

Any advise, options, or information would be appreciated....Thanks.

PS: If anyone is thinking I stopped having EMG's after year four. They never showed lower involvement and I am in year six since diagnosed....so I'm not sure why the last visit was such a mess...lol

 

[old dog]

At the ALS Clinic I go to, they were asking me to blow into a hand-held spirometer at each visit. I am unable to make a good seal on the blow tube because my facial muscles and lips don't work right and consistently failed this test. I consented to a visit to a sleep clinic. and the results of that testing showed that my blood oxygen level did not decrease during the night. I snored a bit when on my back but did not have any other problems. The pulmonologist suggested that if further breathing testing was recommended, I should request to take home an oximeter (the thing that looks like a clothespin that snaps on the finger) which could record my blood-oxygen levels through the night.

I was told by one neurologist that I could never survive surgery because of breathing problems; I had three minor surgeries last year and had no problems. I recovered quickly in the recovery room and had little or no dizziness or confusion--symptoms that are usually associated with low oxygen levels.

If you are not short of breath, the sleep clinic testing or an overnight oximeter test might be an option before getting a bi-pap.

 

[zoohouse]

Old dog makes a very valid point. Do you still have the ability to make a seal on a mouth piece? My husband has excellent control of his facial muscles and has no difficulty with speech or swallowing, so we were not worried about his breathing. When I started to notice that he was using accessory muscle to breath(shoulders and neck flexing with each breath) I became concerned. He had pulmonary tests done which showed a dramatic drop in his FVC, and I knew that the test was accurate as he could make a perfect seal. He had lost significant use of his diaphragm and would require respiratory intervention. Because of his facial strength he was a candidate for the use of a Sip & Puff ventilator, which is non-invasive. He has a Trilogy 100, which can do that plus bipap, or tracheostomy ventilation if we chose to in the future. He also has a ResMed Vpap machine that has the ability to deliver a minimum breath rate if the person does not trigger it. My husband also has central apnea, which means that when he is asleep he forgets to breath. His rate went down as low as 2 breaths a minute, and his oxygenation dropped into the 70s which is really bad. So he has 2 machines, the ResMed that he uses at night with a full face mask, with humidification, and the Trilogy sip & puff that stays on his PWC during the day. If he wants to nap in his chair I switch his Trilogy setting to bipap, and put the mask on him. Without these, I would not have my husband any more.

Paulette

 

[kevinw]

Yeah, I do still have a good seal on the mouth piece during the test. Also, my speech has been starting to go down hill when I hold a conversation, it actually feels like I'm using my chest muscles after I talk awhile. I do get out of breath pretty easy, a quick example would be I can't quite even sing along with a verse or two of a song without being out of breath.

I should add that the intention is to help with my breathing during the night. They said it would help me with energy during the day and help with the way my body (muscles) feel when it is time to get out of bed. It was never mentioned to me that it is was something needed all day.

 

[texastracy]

I use my Trilogy only at night. It helps me sleep better and have more energy. I get about 8 hours a night on it.. My FVC score improved about from November to February. Also my MIP score improved a good bit.i also gained a few pounds, I think because I ate better because I was so tired.

 

[kevinw]

Thanks zoohouse and texastracy...that's the information I was looking for. I don't really look forward to conceding into getting one, but I think having more energy wins out.

 

[texastracy]

Make sure you having a humidifier with it. It will really dry you out if you are a mouth breather. I didn't think I was until I started BiPap.

 

[kevinw]

Make sure you having a humidifier with it. It will really dry you out if you are a mouth breather. I didn't think I was until I started BiPap.

Thanks...I saw the humidifier mentioned a few times, I will definitely get it with. It almost makes you wonder why they just don't automatically have that option. I haven't seen anybody mention that a humidifier "wasn't" needed.

 

[kevinw]

Well, the machine got approved by the insurance company...although I wasn't looking forward to actually getting it. I did get it yesterday and used it last night. It is going to take some time to get used to. But, as true as I sit here after just one night, this morning was the first day I can remember waking up and not being so stiff I felt like I was in an accident. Usually I wake up, hate the feeling in my muscles, lay there stretching and wishing I didn't have to get up. I didn't even realize it this morning until after I got up and disconnected everything and shut it off. I got up and started getting ready for the day when I realized how great I felt waking up. I know it's only one night and things may change, for the better or worse, but as much as I hate to say it...it may be worth the hassle. The machine they gave me is some Trilogy 100 with a humidifier, they claim it's better than a standard BiPAP or CPAP, but I have no idea?