Suggestions & advice please

[SweetPea]

Hi all,

My 79 year old father has had a trial CPAP machine for just over a week. He has 63 apnoeas in an hour and is having difficulty getting used to the CPAP machine.

After the trial week using the pressure of 4 the nurse couldn't give him a machine set to the pressure needed specifically for him because he hasn't worn the machine enough. He is now trying for another week to wear it for longer.

The main problem is that he thinks he doesn't get to sleep at all yet the smart card showed he falls asleep virtually straight away. I have tried to explain that he just thinks he isn't sleeping because his sleep apnoea is so severe he is waking up every minute but he cannot get his head around this. One night last week he remembers waking up so feels he does know when he has and hasn't slept. As a result becasue he thinks he's just lying there awake all night. The nurse said that the pressure was set on 4 for about 10 minutes and to press a button if it then oincreases ans is too much so he keeps knocking the pressure button so it goes back down to 4. When he gets fed up because he feels he can't get to sleep he then turns the machine off and gets up and watches TV (and may then nap in the lounge when he isn't wearing the CPAP).

Anyone any ideas on how I can explain it to him in a better way?

I hope he can persevere with this because he has other conditions (severe Pulmonary hypertension and obesity) that could greatly benefit by him getting decent sleep.
In addition I hope it will generally improve his energy levels and mood ().

I appreciate it is difficult for him as he finds it hard to get comfortable too as he needs a new hip and two new knees but the doctor has declared he isn't fit for any type of anaesthetic.

He also has:
Irregular heartbeat (AF)
Aortic Aneurysm (Thoracic - waiting to discuss with specialist)
High Blood pressure
Empyhsema (recently daidgnosed)

Any advice would be appreciated.

[SweetPea]

Mmm - no replies - that is really disappointing.

My dad has now been back to see the Respiratory Nurse and has been given a machine set with a pressure of 10 and he says it's "Force 10 from Naverone".

The smart card showed he needed a pressure of 14 but, because it also showed leakage, the nurse said she'll try it at 10 for starters. My dad is finding it really difficult as it is quite loud and he reckons he can't sleep because of how loud it is. He keeps knocking it back down to 4. He thinks he hardly sleeps at all but that is not surprising if he wakes up so often because of how severe his sleep apnoea is.

Is there anyone out there who has severe sleep apnoea who can offer any info or encouragement as to how long it will take to get used to this? He often feels drowsy sitting watching TV in his chair but then says he can't sleep once he gets into bed and puts his mask on.

I am sure it will turn his life around if only he can get his head around the fact that he needs to wear it.

[ElleCee]

Hi Sweetpea,
Don't knock people for not replying straight away, we cant all sit here waiting for messages to come in. I for one have only just got in from work and your messages are moderated so it may only have been here for 5 mins.

Anyway,
I have only been on my machine for 2 weeks but have learnt a lot from reading the forum messages.
Having read about the problems your father is having, why not suggest that he try using the machine while he is watching TV. 2 reasons, he gets used to it and 2 he may well fall asleep while it is on.
I have just spoken to my doctor and he has told me that the usual setting for cpap the first time you take it home is 4 going up to 10 after 10 mins. The ramp time (time it takes to get up to full speed) can be adjusted to allow for you to get to sleep nefore it works full out.
What machine does your Dad have?

I hope he gets sorted, it will all come good in time!
Regards
Lorraine

[hsrunning]

Hi Sweetpea, (copied from earlier post) ! the most important thing is a positive attitude, I adopted it from the outset and convinced myself that without it I could say goodbye to ever feeling alive again.
I like so many others have had, and will continue to experience problems from time to time, but it is how you approach them.
As for accessories (which may help) I am afraid what is good for one person may not suit another so it's a "suck it and see exercise". Personally I like the RemZzz mask liners and try to make each one last 2 to 3 nights, make sure you wash/clean your mask/pipework daily, I also have some medical wipes (like the ones they clean you with before an injection) which I use to wipe over the contact surfaces of my mask. I use distilled water in my humidifier that prevents build up of lime scale. Finally an understanding wife (even if she does moan when my exhaust blows on her in the middle of the night) from the mask that is.

Welcome to the forum I am pretty new here myself but have picked up a wealth of information, keep us informed of how you are getting on.

14 weeks on CPAP - GETTING THERE !!!

HSRUNNING

[SweetPea]

Hi Lorraine,

I'm sorry - I wasn't knocking - I guess I'm just over-anxious and getting wound up wondering how I can help my dad to cope with his CPAP.

I can't remember off-hand what machine dad has but will look next time I go over (Friday). The nurse did adjust the ramp time from 10 to 15 minutes which for a lot of people is probably sufficient time for them to get to sleep. Trouble is dad has 63 apnoeas in an hour so, rather than not being aware of waking up when he stops breathing, dad isn't aware of ever having gone to sleep. He feels that he doesn't sleep at all.

I've thought about watching TV as he does tend to fall asleep watching it in the lounge. He doesn't have one in his bedroom at present and he wouldn't be able to carry the CPAP between rooms because of his mobility problems (he struggles walking around with two sticks so couldn't try carrying his CPAP between rooms). It might be worth considering putting a TV in his bedroom though. He hasn't before because his flat is only small and his bedroom is adjoining the lounge but, if he can't adapt soon, it is probably worth trying.

Many thanks for your reply and I hope you are benefitting from the CPAP.

Pat

[SweetPea]

Hi hsrunning,

I agree with you about the positive attitude. I think my dad needs to just start from the premise that this is what he has to wear in future when he sleeps and welcome it for the benefits it will bring him. He does generally try to look on the bright side of life but I think he's a bit demoralised at the mo as he has a couple of pretty serious health issues.

If he could just accept it and manage to fall asleep quickly just once with it on then I'm sure he'll be over the moon when he gets a good night's sleep.

He did actually telephone me yesterday and say that he thought he'd had a dream so I told him that he must have been asleep to get to the stage of dreaming. I think that maybe because of his age he is just going to take longer than others to get his head around it.

I don't think my dad will need mask liners as the mask he is using isn't one that covers his face or nose - it's just one where there is a rubber nasal piece which fits into your nose from below and has a chin strap and a head strap to hold it in place. He did look at the others but chose this as he felt the others would make him feel claustrophobic. It might be that he has to change this though if his appointment on Friday shows he is still having leakage so I'll bear the mask liners in mind.

Dad lives alone and is 79 - now where can I find him an understanding wife? That would be marvellous. LOL

Thanks for the helpful reply and I hope you continue to do well with your machine.


Pat

PS I feel sympathy for everyone on here as I never realised what a problem not sleeping can be as I have always been able to sleep at the drop of a hat. I didn't even realise my dad has had terrible trouble sleeping over many years. This forum is a real eye-opener!

[Tigers Fan]

Good idea?

Hi Pat

The folk not on this forum - or on CPAP, anyway - are the ones to worry about. We all sleep well - or will be soon - 'cos we are hose heads!

About your Dad - keeping him mobile is probably a good idea so a TV in his room might be counterproductive. He sounds far too young to consider using a Zimmer Frame walker - so how about putting his CPAP on a wheeled tea trolley or some such. A few pelvic thrusts or shoves with one on his sticks should get it from his bedside to his armchair - and presto! he can practise while 'awake' watching TV.

Mind, my old Dad used to sleep so long and deeply while watching a Western movie each afternoon that his night sleeping reduced. The young one didn't like Westerns!

A tea trolley like https://www.buycatering.com/trolleys...c467d1157.html

TF

[Richard]

Hello, Sweetpea, I may be able to help.

I am sorry to hear about your Dad's difficulties with his CPAP machine, but since he also has Pulmonary Hypertension in a severe form, I am wondering if he has been prescribed the wrong machine.

I, too, have Pulmonary Hypertension and Sleep Apnoea: there aren't many of us around! I am on oxygen for 16 hours/24 and overnight on a ventilator; a ventilator is not the same thing as a CPAP. The machine I have breathes for me, breathing in and out, all through the night. It means that I get a decent night's sleep, breathing takes no effort at all. For anyone with PH they will tell you it's like being out of breath all the time: and if you're out of breath doing nothing, then you fear what will happen if you actually try doing something.

I assume your Dad has had sleep-studies done to establish the extent of his Sleep Apnoea, how else would you know he has 63 every hour, but why does he not have a ventilator rather than a CPAP? I recommend you ask his GP, although these are generally very ignorant of Sleep Apnoea and its implications.

I hope this has been of some help, by all means contact me on [email protected] if you feel I can be of more help.

[SweetPea]

Hi TF,

Thanks for the reply and the idea about the tea trolley. One of the problems he has is bending down (he has been told that both his knees and one hip needs replacing but now been told surgery isn't an option because of his Pulmonary Hypertension and Aortic Aneurysm) so plugging it in would be the problem. I'll bear it in mind though and see if we can find a way around it.

I don't think he'd use a zimmer frame as it would make him feel old (although he does have one that was given to him when he was in hospital in 2006). It just stands in his room like an ornament. It's only the last few weeks that he's given in and started to use two sticks rather than one...and that's quite something for him to accept. He feels really angry that he's had health issues over the last few years as he has previously been very healthy and active and until 2006 had never had an operation (except a minor one for varicose veins over 40 years ago).

I must say the idea of my dad doing pelvic thrusts to move a tea trolley is hilarious - I'd have to make sure I wasn't around as I don't think I could cope with that sight.

[Tigers Fan]

Solution Central

Hi SweetPea

A short extension cord by the bed and by his armchair - maybe with a string attached to the socket end and tied to something he can reach - would obviate the need for bending.

TF

[SweetPea]

[QUOTE=Richard;8220]

I, too, have Pulmonary Hypertension and Sleep Apnoea: there aren't many of us around! I am on oxygen for 16 hours/24 and overnight on a ventilator; a ventilator is not the same thing as a CPAP. The machine I have breathes for me, breathing in and out, all through the night. It means that I get a decent night's sleep, breathing takes no effort at all. For anyone with PH they will tell you it's like being out of breath all the time: and if you're out of breath doing nothing, then you fear what will happen if you actually try doing something.

I assume your Dad has had sleep-studies done to establish the extent of his Sleep Apnoea, how else would you know he has 63 every hour, but why does he not have a ventilator rather than a CPAP? I recommend you ask his GP, although these are generally very ignorant of Sleep Apnoea and its implications.
QUOTE]



Hi Richard,

My Dad only learnt that he has severe Pulmonary Hypertension recently and isn't greatly aware of any breathlessness. He gets a little out of breath occasionally at rest but had put it down to having put weight on through being immobile. I don't notice him being particularly breathless either.

It was only when he was sent for Lung Function Tests and asked the reason why that he found out the Anaesthetist had referred to his Pulmonary Hypertension in a letter asking for advice. Nobody had actually bothered to tell him yet they had picked it up 3 years ago when he had surgery for a previous aortic aneurysm (although it has worsened now to something like 66 mmHg and it was between 44 and 50 mmHg 3 years ago). After the Lung Function tests and a CT scan that was then they discovered the new aortic aneurysm and emphysema.

The respiratory guy didn't think dad's cardio problems accounted for his low oxygen saturation and thought he might have obesity-related hypo-ventilation and that the Pulmonary Hypertension had been caused by Sleep Apnoea. He had an overnight test at home where he wore the chest band, peg on his finger and mask. He hasn't had any other sleep tests though.

I do remember the doc saying that he wasn't to be put on Oxygen though as the appointment just threw up so much info that I've forgotten.

We're off to the hospital tomorrow so I will ask the Respiratory Nurse about it.

Thanks so much for your reply.

SweetPea

[SweetPea]

Hi SweetPea

A short extension cord by the bed and by his armchair - maybe with a string attached to the socket end and tied to something he can reach - would obviate the need for bending.

TF

Hi TF,

We've sorted out the bending problem. We've bought a set of remote
radio-controlled plugs and plugged his TV into one, his lamp into another and his CPAP machine in the other. Now he just has to press a button to switch them off and on without bending down at all.

He hasn't got his head round them being radio-controlled yet even though I've shown him he can turn something off without pointing the control at it or even being in the same room. They are brilliant - I'd like some myself but maybe that's just being downright lazy. LOL

Pat

[SweetPea]

Update following hospital visit today

Mmm, well I had high hopes when went to the hospital as dad seemed to think he was feeling he was coping better on CPAP.

The Smart card showed that in the last 9 days the air had flowed for over 32 hours but that dad had actually only used it for a total of 7 hours and 45 minutes in that time. That's less than an hour a night.

In that 7 hours 45 minutes he had kept pressing the ramp button as he felt a pressure of 10 was too much to cope with. There was a high amount of leakage too. He reckoned he still hasn't slept most nights even though the card showed apnoeas and the nurse said he must have been asleep to have them. (I presume if you stopped breathing whilst awake you would be aware of it...unless it simply can't happen when you're awake?). Previously he was having an average 63 apnoeas per hour and it is now 37 but considering how little time he was actually using it the data is not totally useful.

He tried some other masks that might help regarding leakage and he thought one of them was fine until the nurse connected it to the CPAP and turned the pressure on which he immediately found unbearable.

The upshot is he has to persevere with the current mask but needs to try and ensure he fits the strap on his head properly to hold the nasal piece in place to eliminate leakage. He also needs to wear it for longer. He has an appointment for one month's time.

I just hope he perseveres in trying to wear it properly because I'm sure the benefits are fantastic. I think I'll have to revise my expectations of him though as his current attitude just seems to be to say that it's totally unnatural to sleep with a mask on and air blowing a gale up your nose.

You can take a horse to water......