Help with my Mums cpap mask leaks up to 130 l/min / extremely dry mouth

[Marauding6082]

Hello,

My mum has been diagnosed with lung cancer and we are trying to get her quality of life to its best.

Her cpap mask is constantly leaking and she has a extremely dry mouth from it for quite a while now. The clinic has told us they are sending out a different mask to try but I wanted to see if there was any help available out there or advice.

Her tank ether needs topping up of a night or is empty. She is breathing through her mouth / it is open when she is asleep. When i try to adjsut the mask when she is sleeping it ends up having to be quite tight / is hard to pin down a good seal. she was leaking 130 l/ min but since ive been adjusting the mask and it was changed to a medium she is leaking 30-50 depending how much itry to adjust it during the night.

Sorry if i have rambled on
I have tried to attach pictures but have made a imgur post

[url]https://imgur.com/a/hVW2cNQ

[Miss Emerita]

Welcome. Yes, your mother needs help controlling those leaks. Does she have a sense of how they come about?

It sounds as though you've already helped her with mask fitting, but you might look online at fitting videos to see whether there's some tweak that might help.

Some people find that a mask liner or stabilizer helps with leaks. You could check this out:

https://www.padacheek.com/airfit-30

[Marauding6082]

Hello,


Is there any more data or screenshots from oscar i can post that might help?


She isnt really aware of that at the moment as she is quite sick. In the past she has really had to tighten the mask and she has constantly got lines on her face and red bump on her nose.
When she used the smaller sized mask her mouth would open past the bottom of the mask itself when asleep.
Im concerned she has oral thrush because of the constant dryness in her throat?

This isnt a because the cpap pressure is too high is it?

I will try adjust her mask again tonight and get liners.


Thanks

[rick blaine]

Hi Marauding6082,

I notice you say "Mum" and not "Mom" and that you refer to "the clinic", and I wonder if you are posting from the UK?

If you are, then please note that Pad-a-Cheek is a US- based outfit – meaning a longer delivery time.

Also, for dry mouth, sometimes a patient needs more than just a humidifier, or if they already have a humidifier, then more than just an increase in the moisture setting. Sometimes an oral gel is of benefit.

Both Oralieve Moisturising Mouth Gel and Biotene Saliva Replacement Gel are available from Boots (a UK national pharmacy chain) and your doctor may be able to put either on prescription.

[ozij]

Hello,
Is there any more data or screenshots from oscar i can post that might help?

Not at this point. With 71% of the time in Large Leak, everything else is meaningless.

Im concerned she has oral thrush because of the constant dryness in her throat?

Oral thrush can be a side effect of chemotherapy.

This isnt a because the cpap pressure is too high is it?

Probably not.

I will try adjust her mask again tonight and get liners.

Which type of mask is she using presently?
What has she - with or without your help - tried in the past?
How long on CPAP therapy? Diagnosed before or after the lung cancer diagnosis?

Also, for dry mouth, sometimes a patient needs more than just a humidifier, or if they already have a humidifier, then more than just an increase in the moisture setting. Sometimes an oral gel is of benefit.

While true, this won't be enough in this case.
What she needs first and foremost is a way of masking up that will keep the pressurized air from whooshing out through her open mouth.
If she has to breathe through her mouth, she needs full face mask.
If her jaw drops open uncontrollably, dislodging the mask, she needs a chinstrap that will keep her jaw from dropping. You shouldn't try to use a tightly strapped mask as a way to keep her mouth from opening.

Is she well enough to interact with you when you're fitting the mask on? If yes, try to have her drop her jaw when the FFM is strapped on, and see if you can adjust it to keep from leaking even when her mouth is open. Don't use force - play around with the straps and utilize their elasticity.

Keep in mind that older masks leak worse.

[Marauding6082]

I notice you say "Mum" and not "Mom" and that you refer to "the clinic", and I wonder if you are posting from the UK?

Yes I am in the UK.

If you are, then please note that Pad-a-Cheek is a US- based outfit – meaning a longer delivery time.

Thanks I'm looking into them for her.

Also, for dry mouth, sometimes a patient needs more than just a humidifier, or if they already have a humidifier, then more than just an increase in the moisture setting. Sometimes an oral gel is of benefit.

Both Oralieve Moisturising Mouth Gel and Biotene Saliva Replacement Gel are available from Boots (a UK national pharmacy chain) and your doctor may be able to put either on prescription.

She has a humidifier and heated tube at present and I tried the oral gel which is helping her.

Thanks for the adivce I have updated the imgur link with last nights general data. She woke up at 4 with lung pain so i had to give her pain medication, thats why there is a gap in the data.

I adjusted the straps while she was sleeping until I felt there was less leaks and the leak rate has dropped down to a median of 6 and 99.5% of 25 now.
The tank still had half the water left aswell.

[Marauding6082]

Hello,
Is there any more data or screenshots from oscar i can post that might help?

Not at this point. With 71% of the time in Large Leak, everything else is meaningless.

Im concerned she has oral thrush because of the constant dryness in her throat?

Oral thrush can be a side effect of chemotherapy.

This isnt a because the cpap pressure is too high is it?

Probably not.

I will try adjust her mask again tonight and get liners.

Which type of mask is she using presently?
What has she - with or without your help - tried in the past?
How long on CPAP therapy? Diagnosed before or after the lung cancer diagnosis?

Also, for dry mouth, sometimes a patient needs more than just a humidifier, or if they already have a humidifier, then more than just an increase in the moisture setting. Sometimes an oral gel is of benefit.

While true, this won't be enough in this case.
What she needs first and foremost is a way of masking up that will keep the pressurized air from whooshing out through her open mouth.
If she has to breathe through her mouth, she needs full face mask.
If her jaw drops open uncontrollably, dislodging the mask, she needs a chinstrap that will keep her jaw from dropping. You shouldn't try to use a tightly strapped mask as a way to keep her mouth from opening.

Is she well enough to interact with you when you're fitting the mask on? If yes, try to have her drop her jaw when the FFM is strapped on, and see if you can adjust it to keep from leaking even when her mouth is open. Don't use force - play around with the straps and utilize their elasticity.

Keep in mind that older masks leak worse.

I have put on the imgur an updated overview after adjusting her mask and the leak rate has come right down.
She was only diagnosed in december then was in hospital twice due to pneumonia (untreated after first discharge??) and the lung pain. She has not started any treatment and if she does not improve over the next week or two they will not give her treatment due to how poorly ( fatigued) she is and how advanced it is.

She is presently using a F20 mask Size M. Her mouth was gaping over the size S they recently changed her on in the hospital mid December but I swapped it to the spare new M they supplied too.
The mask is one month old at present. They replaced her tank, heated tube and headrest mid December too.

In the past she was successful by having to pull the mask tigher similar to what I did last night. Unfortunatly this leaves lines on her cheek where the pressure is and a red bump on her nose.

She has tried a nasel pillow in past but hated it. Tried one that went over her head I think but didnt like it.

She has been using the cpap since 2019,so the cpap was diagnosed before lung Ca that was this december.

The oral gel seems to have helped and adjusting the mask with asking her to have her mouth open see new image of oscar data.

Is she well enough to interact with you when you're fitting the mask on? If yes, try to have her drop her jaw when the FFM is strapped on, and see if you can adjust it to keep from leaking even when her mouth is open. Don't use force - play around with the straps and utilize their elasticity.

Yes this is what I have done which she has done herself in the past but I think she stopped doing it due to the red bump on her nose. Perhaps she needs a small mask but with a chin strap?
Would a chin strap be a problem if she is sick or nauses while wearing the cpap is my only concern.

Thanks for your time

[ozij]

In the past she was successful by having to pull the mask tigher similar to what I did last night. Unfortunatly this leaves lines on her cheek where the pressure is and a red bump on her nose.

There are "full face masks" that do not go over the nose at all. Take a look at ResMed's F30 for example, Fisher and Paykel have a similar one/ Here are links:

https://shop.resmed.com/GB/en/cpap-masks/c/140
https://www.fphcare.com/en-gb/homecare/ ... vora-full/

The oral gel seems to have helped and adjusting the mask with asking her to have her mouth open see new image of oscar data.

That image looks much much better!!!

Would a chin strap be a problem if she is sick or nauses while wearing the cpap is my only concern.

I don't know, and I think you're right to be thinking of that. It looks like you've managed the leak very well this time, so its possible that a chin strap is unnecessary.

If you can afford it, do try out masks that may be more comfortable.

If you want to share more OSCAR images, there's no need for you to upload them in place of the previous ones. Just create a new link to the new image, and post it.

And do remember to take care of yourself too during this difficult period.

Has anyone mentioned adding oxygen to the CPAP?

[Marauding6082]

In the past she was successful by having to pull the mask tigher similar to what I did last night. Unfortunatly this leaves lines on her cheek where the pressure is and a red bump on her nose.

There are "full face masks" that do not go over the nose at all. Take a look at ResMed's F30 for example, Fisher and Paykel have a similar one/ Here are links:

https://shop.resmed.com/GB/en/cpap-masks/c/140
https://www.fphcare.com/en-gb/homecare/ ... vora-full/

The oral gel seems to have helped and adjusting the mask with asking her to have her mouth open see new image of oscar data.

That image looks much much better!!!

Would a chin strap be a problem if she is sick or nauses while wearing the cpap is my only concern.

I don't know, and I think you're right to be thinking of that. It looks like you've managed the leak very well this time, so its possible that a chin strap is unnecessary.

If you can afford it, do try out masks that may be more comfortable.

If you want to share more OSCAR images, there's no need for you to upload them in place of the previous ones. Just create a new link to the new image, and post it.

And do remember to take care of yourself too during this difficult period.

Has anyone mentioned adding oxygen to the CPAP?

Hello,

I didn't realise i was deleting the images and adding the others. Thanks for pointing that out. I have attached a new link https://imgur.com/a/3C7aFqK

The sleep clinic is sending out a different mask to try so we will see what that is like when i comes.

Ive noticed that the three times my mum went to A and E her respiration rate went up and her pain too. Went to a and e on 4th dec "loosely" diagnosed and told she'll be an outpatient we cannot do anything for you here and youll get a follow up. Admitted 12th and treated for pneumonia, discharged chaotically on the 19th December left in the cold without informing us she wasnt being transported home. Readmitted 26th Decemeber, she had pneumonia. put on way too much painkillers and had to deal with subsequent sickness and not eating.

My ramblings are it seems maybe the pneumonia hasnt been fully treated as her respirtory rate is rising again recently?
Or am I reading the graphs and data wrong?

Just concerned that she did go a bit hot and cold the other day and I know of lots of people who took a month or more of antibiotics to get over things recently.

I will bring up the oxygen on her CPAP and I have seen that a pulse oximter can also be added to her CPAP but im unsure if they will accomdate such an unusual request but with her lungs I would think its extra information for the clinicians to observe her??

Thank you for replying to me, I have been overwhelmed with the support strangers have been giving me recently. I am not used to asking for help so thank you very much.

[Miss Emerita]

I'm glad you're asking for help, even though that's not your usual way of managing. This is all hard enough as it is, and on top of that you've been dealing with some poor medical treatment for your mother.

You might consider getting a recording O2 monitor for your mother to wear during the night. That way you can get an idea of whether her O2 levels are dropping too low. (If she's mostly above 90, that's fine.) Low readings should persuade her doctor (pulmonologist? oncologist?) to provide oxygen via her PAP machine.

You did a wonderful job of addressing the leaks.

Your mother's median respiration rate is within the normal range for adults. Do you have other reasons to suspect she still has pneumonia?

[Marauding6082]

I'm glad you're asking for help, even though that's not your usual way of managing. This is all hard enough as it is, and on top of that you've been dealing with some poor medical treatment for your mother.

You might consider getting a recording O2 monitor for your mother to wear during the night. That way you can get an idea of whether her O2 levels are dropping too low. (If she's mostly above 90, that's fine.) Low readings should persuade her doctor (pulmonologist? oncologist?) to provide oxygen via her PAP machine.

You did a wonderful job of addressing the leaks.

Your mother's median respiration rate is within the normal range for adults. Do you have other reasons to suspect she still has pneumonia?

I will get a recording o2 monitor as you suggest, thanks.

It is within range but the two surges in the median range coincide with the peak of her pneimonia pain and subsequent addmission.

In all honesty I think I am just being very vigilant and anxious of any impending problem as I am worried she is just "rallying" one last time to get well and say goodbye to people before her final days, as people are saying her improvemnts this past week out of hospital are like a miracle.

Thank you again

[Marauding6082]

Hello,

I now have a spo2 recording device. I have posted a new imgur

https://imgur.com/a/d1KdyiI

Her respiratory rate seems to be going quite low. Should i be alarmed?
I have posted from a few months ago, when she was in the hospital and the past two days.

Thanks

[ozij]

Given the your Mum has a lung disease, I can understand why you're posting the charts you chose.
However. it's not for nothing that we recommend a certain way presenting the OSCAR charts. For most of, the issue is the way the breath flows and whether there are obstructions the CPAP can help with.viewtopic/t158560/How-to-post-images-for-review.html

It goes almost without saying that the CPAP is there to help with sleep disordered breathing.

You've done a great job with leaks according to the newer charts, the older ones (October, and 15 January) are so leaky they're meanigless.
How is your Mum sleeping these nights with less leaks?

[Miss Emerita]

When you have some O2 data, please share it with us.