Bipap advice sought

[Danijela]

Hi All,

Laurence is now home and is using his Bipap. We set it up by the bed last night, including the humidifier, he put the mask on, I pressed the ON button and then....the sound! I find the sound disturbing, inhale-exhale inhale -exhale, him behind that mask... I know one ought to be pragmatic about it, but I just kept thinking "this is a life support machine!" and my heart kept pounding. Anyone else had those feelings, and are they going to pass?

Laurence is very matter of fact about it and has now kept it on for 8 hours, two nights in a row. He sleeps OK with it. His arms are weak and he can't take the mask off by himself, nor can he turn the machine off (buttons are hard to press) by himself. This concerns me. I keep thinking that he will suffocate if he gets out of the rhythm of breaths the machine is set to. Plus it is a full face mask so he can not call out. Should I worry about this?

The bridge of his nose was sore from the mask. I am aware this can become a problem, so would be grateful for any advice before we get to the point of broken skin. Also, some condesation inside of the mask - is this a normal occurence? He has been given another mask that fits only on his nose, and he will try it out.

Any tips, thoughts and particularly reassurances are welcome.

Dani

 

[chriss]

Hi Dani,

My husband is on the biPAP 24/7 and has been since early last year. It is good that you have a second mask to swap to. We rotate between the Resmed mirage quattro full face and the mirage liberty which fits around the mouth and has nasal prongs. We rotate because it gives the bridge of nose a rest and then in turn the inside of the nostrils a rest. Giving the bridge of nose a rest from the mask is a help with pressure sores. There are also many types of dressings and it hard to say what works best for you but if there is a skin break we have used Comfeel plus 4 by 6 cm or duoderm. There is a range of thicknesses so it is good to get a few types, thin and thick and see what works best.

In terms of needing help with the mask well my husband cant use his hands or arms so I do everything with the masks. We actually never switch off the machine! We change the filters though much more frequently than the manufacturer advises. Would hate it to stop because of dust build up. He can still talk around the breaths but we also have a call bell system for him to get my attention. It basically is a door bell system with a jellybean switch attached. So it there is a part of the body that has movement then he can press on the switch and the door bell gets my attention.

I don't know what machine you have but the first one we had had no alarms. So if the power went out of it got unplugged I might well have been unaware. Our new machine has an alarm that sounds if the power goes out so it would be good to check if yours has that feature. Another thing that concerned us was if the power went out I had to jump up and connect the inverter to the external battery and then the both to the machine. All a bit of a worry when someone cant breathe. So recently we bought a "UPS" which is used for computer backups when the power is out. It gives us fifteen minutes if the power goes out for me to connect up the external battery etc.

So sorry for the long winded reply but my tips list is:
Have more than one mask so you can rest pressure areas
Have a BiPAP with an alarm if the power goes out
Have a back up BiPAP machine if the first machine develops a fault (probably not essential for you at this stage though)
If your machine has an external battery only then get a UPS-it will buy you 10-15 mins to do the changeover
If you're worried about communication a doorbell system may help
Have some spare parts for the masks. One carer broke the elbow on the liberty and it was a problem getting a quick replacement.

Re the humidifier, I can't help as we stopped using it about June last year. Oh and yes I agree it is a life support system and I get really frustrated that people don't understand and when the agencies send in a carer all they get told is he wears a mask! Who do they think he is-Zorro?

If you have any more questions I am happy to help if I can,

Chris

 

[rcharlton]

Hi All,

The bridge of his nose was sore from the mask. I am aware this can become a problem, so would be grateful for any advice before we get to the point of broken skin.
Dani

Hi Dani

I assume that you have tried adjusting the mask a number of ways. I’ve used the Quattro. The Quattro has that knob in middle of the forehead that pushes the mask out and relieves pressure on the bridge of the nose. I could never figure out which way it was being adjusted. Of course if you push it out too much the mask will leak.

I also found that for sleeping it’s better to keep the straps a bit loose but still snug. Even though the mask would leak when I was upright, I could use the pressure of my pillow to hold it in place when lying down. It eased the pressure from the mask.

I actually found a better full face mask than the Quattro. It is the Resmed Ultra Mirage. It’s hinged so you can adjust the mask from fitting flat against the face to a more angular fit taking pressure right off the bridge of the nose. Much better than the Quattro. I don’t know why everyone pushes the Quattro. I’ve bought the Ultra Mirage on Amazon for less than $100 US.

At the first sign of a sore put a band-aid on.

Good luck.

 

[Jellycat]

Oh Dani, no advice, just to say I'm thinking of you as you adjust to this new bit of kit. Others with more experience will fill you in. I don't sleep in the same room as my pals but I do use a monitor - don't sleep briliantly but better than when she's not using the bipap because of the irrelgularity in breathing sounds. I'm a light sleeper anyway. I find I've gotten used to the rhythmic in out of the machine. I just seem to wake now when she needs suctioning. We've had it since December. Good luck to you both.

 

[tmasters]

Dani,

I just started using Bipap in December, and I use it all night every night. At first there was an adjustment period due to bad pressure settings, but that's another story. Now it is very easy. My wife and I actually find the noise soothing, but at first this wasn't the case, so perhaps it's just something that will come with time.

Don't worry about getting "out of sync" because the machine responds to his breath rate. The machine senses the pressure difference when he inhales and increases the pressure to help him. When he stops inhaling, the machine senses this also and backs off the pressure. The rate of breaths is totally controlled by him. Some machines will "give a breath" if he stops breathing for more than a few seconds.

The only thing I worry about is what if the power goes out and I don't wake up and notice? Will I suffocate from re-breathing my own air? I'm considering getting a UPS.

-Tom

 

[rose]

Dani,

It looks like you've gotten good advice here. About your feelings of the bipap being life support, it might help to think of it as being more in the category health equipment. As in someone who (for example) needs to exercise due to health reasons, and hearing them on the treadmill each day. Instead of it being a sound you equate with progression, it is a sound that means Laurence is slowing his progression.

Psychologically, (like I'd said in my PM to you) it does help to have the machine set close to the bedside, lower than the mattress so its out of view to the casual observer. Plus, he can't accidentally pull the machine off of what it is set on.


Does his machine give a breath when he does not? That is a great feature, and I'm so glad to have one that does now.

The alarm function should be on, if its not, the medical support group that set him up with it should be able to guide you through how to turn in on just by following instructions via a phone call. If he has a real emergency, (which is so extremely unlikely) before you're able to help get the headgear unfastened, is he strong enough to grasp the hose and disconnect it from the mask by giving it a good pull?

We do have mine on a UPS power backup.

 

[trfogey]

Maybe it wouldn't seem so much like life support if we thought of the BiPAP as "supplemental". You know, just like our vitamins and such are nutritional supplements that we take because we need more than our normal meals give us, we could call the BiPAP our "respiratory supplement" because we need a little more air than our normal breaths can give us.

Nothing much else to add to the good practical information given here except to recommend a nasal pillows mask in addition to the full-face mask. I had one heck of a time with skin breakdown on the bridge of my nose until I switched over to nasal pillows. Of course, I did get two solid years of good use from full-face masks before I started having skin breakdown, but that's a whole different story.

One other thing: if you are going to use a nasal mask in a situation where the BiPAP user may fall asleep, you'll want to find something soft to use as a chin strap to keep the BiPAP user's mouth closed. First, if the mouth falls open, the pressure pushes part of the air out of the mouth and not into the lungs. Second, you ain't heard super snoring until you've heard BiPAP-powered snoring, especially once the RTs start bumping the pressures up. :lol:

(Nighttime user only -- 1 1/2 years, BiPAP 24/7/365 -- 1 1/2 years), currently using nasal pillows)

 

[tmasters]

Agree with trfogey... Nasal pillows plus a chin strap were part of the solution for my problem of adaptation also.

-Tom

 

[arkallen]

Yep, gotta love the Nasal Pillows! My arms a pretty good really, however I found the half face mask difficult to remove. The Nasal Pillow mask comes off so easily in contrast, no velcro, no clips, so I think that might be an advantage to you also. I am on a second machine, A Respironics BiFlex Auto I think its called; and it is amazingly quiet.

I hope things settle down for you.

 

[Danijela]

Thank you all for your insights and encouragement. And for putting this 'intervention' into perspective. We were given a nasal pillows mask to try out, I am trying to encourage L to give it a go. He has had some issues in the past with the septum/nose so may not benefit as much. I do not think his machine would take a breath if he stopped breathing, it is rather basic.

Dani

 

[rose]

Dani,

The nasal pillows don't work for me, I hated them. They hurt my nose if they were tight enough to not let air escape, not only while I was wearing it, but, throughout the day my nose still hurt, up in the nasal passages (not real certain of nose anatomy as to what to call this).

Thankfully my mouth stays shut when I sleep, and even though my lips don't close tightly, my tongue sticks to the roof of my mouth, so I don't get air escaping. But, in the past, I still wanted to try something that did not touch my nose. There is a mouth piece type mask (sort of shaped like a pair of lips, which fits inside the user's lips) and a clip goes on the nose, I got one, but it was too drying to use at night. Sometimes I'll use it during the day if I want to read while I rest, instead of falling asleep.

If Laurence does not have the bipap that takes a breath, such as AVAP, I personally think you should ask for it. Don't know how the UK health system works, but, from my own experience the AVAP type is far superior to a basic bipap, and the benefits well outweigh the hassle of getting re-setup with another machine (if it can be done). It really is that much better.

Once he gets past the acclimation period, and the settings adjusted to what is optimal for him, I think you'll both start to see how this is a real positive to have it.

 

[Marjorie R. Wilcox]

We were told it is better all around not to have the humidity in the Bipap, but added to the room instead. We keep our humidity between
40-50% throughout the winter... and the summer months take care of itself. Rick has never had broken skin from his mask... and we seldom
wash it. He wears it 8-10 hours a night and 2-4 hours each afternoon for his nap. He has had it for 3 years.

Yes, you do get used to the sounds... and the sounds change 20 minutes into the time you put it on, allowing for him to fall asleep and then increase in speed. If he doesn't fall asleep that soon, you "vamp" (reset) it to start again. The sounds change, and he could even skip a breath once in a while. If it whistles, the mask is crooked or there is pull on the hose. Rick has to sleep on his back, pillows under his elbows, and at a 45 degree angle with the foot of the bed raised so he doesn't slide down and out.

He sleeps like a baby and I sleep on my side, quite crooked I should add... but I snuggle up to his shoulder all night. He gets up in the
middle of the night to go to the bathroom. We keep night lights on to show the way. Because he staggers so much, we will soon set up
a urinal at the bedside.............Good luck with your Bipap. P.S> We use Chomatrazole cream for anywhere on the body where the skin
breaks down. It heals extremely quickly.. like between applications. Ask your doctor if a thin amount could be used on the face. We have used it .... like under the belly or where it is warm and moist. The mask is a warm moist place too. Ask the doctor if you could cut out the humidity and put in a cold air humidifier in the room instead. Just my 2 cents... and I am not a professional.

 

[4mymom]

Hi Dani!

Do a google/yahoo imagine seach for the "mirage liberty mask" and see what you all think. I struggled for a couple of months with the bridge of Mom's nose, trying everything I could think of to prevent redness and skin breakdown with no luck. It got to the point to where the bone was slightly exposed before I finally came across this mask. Not only are there no real pressure points, but mom loves the design, as she's able to wear her glasses with it on. The design is basically an oval mouthpiece w/the nasal pillows on top. Mom was hesitant about the nasal pillows, and it took a day or so to get comfortable with them, but we've had no other trouble with the mask at all! Hope this helps!

 

[Pat Paine]

Dani,
I use the AVAP close to 24/7 now.THis machine is very quiet,maintains
my tidal volume, compensates for leaks and breathes for me if I stop. I have been on the AVAP/ BIpap 10 months
and my FVC (forced vital capacity) has remained at 57 since then. I use to go
sleep counting respirations, but that stopped as I got use to it. I use a full face mask,
tried all the nasal types,but they either slipped off or hurt my nose. Medicare pays for a new mask every 3 months. Hope this helps.
blessings, Pat

 

[Danijela]

Thanks again everyone for your tips. I managed 6 hours next to him last night! (radio and some earphones, but still...)
We shall askfor mirage liberty mask at our next ventilatory support clinic visit. I have watched a video (ad) for this mask and it looks good. AVAP sounds good, but I doubt we can get it here at the moment as all is supplied for free via National Health Service. Laurence's bipap hasn't got an alarm (?), the settings have been locked (so not to be changed accidentally), and we were told that battery last for about an hour, but 'not to worry' as in case of a break down and him not using it for one night nothing would really happen. Once he needs it for 16 or more hours they would provide a back up machine. I am curious about his FVC, if it will plateau or continue to drop. Hope for the former.

Take care everyone. Dani