Cpap users with servere copd

[Camposdemurcia]

Does anyone have experience of using a cpap machine to remove CO2 in someone who has servere COPD? My husband has just been told he must wear one at least every night as his oxygen levels are low and he is retaining CO2. He us trying it but finding it impossible to sleep and is not too keen to continue

[Damon1864 Volunteer]

Hi, your husband needs the CPAP as retaining carbon dioxide is extremely dangerous. I have had to use one myself which actually helped. He could end up in hospital if he doesn't use the machine , I'm not in any way saying he will but it is a possibility as the retention of carbon dioxide is dangerous. P lol ease let us know how he gets on. You both have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxxx 🌻🌻

[Camposdemurcia in reply to Damon1864]

Thank you for replying . He has been told he will need to use it at night for the rest of his life. My fingers are crossed hevwill get used to it

[Ian1967]

Hi Camposdemurcia, I was put on oxygen 24/7 and BiPAP and oxygen at bedtime when I suffered Type II Respiratory Failure in 2017, I was originally wrongly diagnosed as suffering COPD, but my Respiratory Nurse then said I was suffering C02 retention due my Scoliosis which I was born with along with Hydrocephalus (Water on the Brain).

I would strongly advise your husband to try and persevere because it really will help him with his condition, C02 Retention is a very dangerous condition if left untreated he might just need to choose a different mask and make sure it is properly adjusted for his needs, if he really is finding it impossible to cope he could speak to his Respiratory Specialist about switching to a BiPAP machine instead, CPAP works on one constant pressure when you breathe in and out, whereas BiPAP works on two different pressures lPAP the higher pressure when you breathe in and EPAP a lower pressure when you breathe out, this makes BiPAP easier to adjust to rather than CPAP.

I have been using BiPAP now for five years and haven’t looked back, I now only use ambulatory oxygen for walking and exercise and BiPAP and oxygen at bedtime and I’m hoping after my next Home Sleep Study in December to be able to stop using oxygen at bedtime and use just my BiPAP at bedtime and ambulatory oxygen throughout the day.

I hope I have been some help.

Ian.

[Camposdemurcia in reply to Ian1967]

Thank you Ian. Your reply us really useful and fills me with some hope. My husband was put on oxygen in 2019 but was taken off it 4 months later as he was found to be retaining CO2. Since then his copd has increased and his activity reduced but he has managed to keep his oxygen levels fairly stable until last week when they reduced to 85 and we're then very unstable. We will see how he gets on but to know there are possible alternatives is very reassuring. Thank you

[Poppy2525 in reply to Ian1967]

Hi Ian,

I totally agree with all that you say, I am in the same boat. But a little while ago I asked my respiratory nurse if we could switch off the concentrator at night as I am not exerting myself while asleep therefore don't need the oxygen. They agreed to try it for a month and come to me the next morning to measure my oxygen levels. We found that the oxygen levels on just the BiPAP machine were good and some mornings were better than with the oxygen. so I don't have to have the noisy concentrator on in the night now which is so much better .

I also found that the NHS face mask left deep marks on my large nose, so I found Phillips on line do a range called dream wear and are much more comfortable and softer. I mentioned this to my nurse who then told me I could get these via the NHS !! so is pays to ask every time.

also it is interesting what 'Hello Dolly' mentions 'nasal pillow' I have never heard of and would like to know more about.

[Ian1967 in reply to Poppy2525]

Hi Poppy2525,

I was actually told my levels on my last Sleep Study were actually probably good enough to come off bedtime oxygen, I had my 6 minute walk test with my Oxygen Nurse in July and she told me, because of my BiPAP compliance I would probably be able to come off my oxygen at bedtime, I had just learnt I had a video consultation at the end of August with my Ventilation Respiratory Specialist and my Oxygen Nurse told me to raise the question with him, unfortunately since then my video consultation was cancelled three times, I eventually had the appointment two weeks ago and my Respiratory Specialist said he would arrange my Home Sleep Study with my local hospital, I have now received the appointment for 12 December, but I won’t hold my breath just yet, the Sleep Studies are like gold dust at my local hospital and are forever being cancelled.

Ian.

[Poppy2525 in reply to Ian1967]

Hi Ian

Sorry I haven't replied sooner but I don't come on here everyday because I still work even though I am 73.

I didn't have to see a consultant to test my oxygen levels and evaluate whether I could come off the oxygen at night, this was all done via my respiratory nurses who were very good. I saw a consultant back in June and I had to tell him that it might be time to have another lung test as I hadn't had one since 2019, I had one done in August and still waiting to see him and hear the results.

Getting an appointment with a consultant is rarer than hen's teeth and my experience of local consultants is that in the main they are useless, my original consultant buggered off to Dubai probably to get more money, not that they don't make enough with all the private work they do!! They never seem to be prepared when they see you. They are given enough notice so they should have read your notes before seeing you!!

best of luck

[Patk1]

Could he go on for cpl perhaps half hr sessions in daytime to practise getting used to it,and gradually adapt to it? Co2 build up is v serious.persevering will help him .perhaps he could ring ventilation team and maybe get something to help him sleep

[Camposdemurcia]

Thank you for your reply .Another possibility option focus to explore is good. I'm so pleased with this site. It is great to have other people's ideas and shared experiences. I feel very supported. Thank you

[Spacecat1]

I have used one for about 7 years I use at bedtime and often during the day either while having a afternoon nap or reading. Sometimes it does make fluttering noises but moving stops it and a brriilliant husband who cleans the pipe and the mask@

[Camposdemurcia in reply to Spacecat1]

Thank you for sharing your experience. I'm finding the replies very helpful and supportive.

[Spacecat1 in reply to Camposdemurcia]

It does get easier practice makes perfect. Xx

[Camposdemurcia in reply to Spacecat1]

I shall tell my husband that. Thank you.

[kathbrad3]

I hated mine at first and it took me a few months to get used to it now I can't sleep without it

[Camposdemurcia in reply to kathbrad3]

This is so positive. Fingers crossed my husband will feel the sane. Thank you

[Hellodolly]

Hi there

i have used a cpap for over a year, and it does take a bit of getting used to, but in my experience i have had so much more energy during the day. One thing I have found useful is to change the masks around. Do speak to the sleep consultant at the hospital. I have several different types, and the nasal pillow ones, which also have a very light head strap , are very easy to wear. i don’t use the very cumbersome mouth and nose one any more, as they involve face straps which make me feel imprisoned.

It is basically a bit of trial and error and a bit of getting used to. My sats were 70 at night before cpap, so it has been a life changer.

Good luck!!

[Camposdemurcia in reply to Hellodolly]

Thank you for sharing your experience. My husband has problems wearing masks so it is useful to know there are different types he can try.

[Threecats]

Hi

I don’t have COPD but I do use a CPAP machine for sleep apnoea and completely sympathise with your husband in his struggle to get used to the machine. To help adjust to the feeling of the mask on my face I used it in the evening watching TV for a while and gradually adjusted to it. Most machines also have a setting called EPR which reduces the pressure when breathing out, so it might be worth checking with his clinic that this facility is on. Mine wasn’t and I found it much more comfortable once it was working.

The other thing that really helped was adjusting the pressure. I was given my machine during Covid and so was just handed the bag and instructions. It’s an auto-titrating machine, so adjusted the pressure to what it thought was needed but would go too high for me and constantly woke me up until it was adjusted. I’m assuming your husband’s machine is on a set pressure, though, given his condition. If it isn’t, then it would be worth asking the clinic about that I think.

Finally, as Ian 1967 says, there is the option of a Bipap machine, The EPR function on an ordinary CPAP machine reduces the pressure when breathing out by a maximum of three points, so works like a poor man’s version of Bipap but, with a proper Bipap machine you can alter the pressure differences much more, so making breathing out a lot easier.

I do wish your husband well with it. Please tell him not to despair,. I never thought in a million years, after all my struggles in the early days that I would be able to tolerate CPAP but now I can’t sleep without it!! He’ll get there too, I’m sure x

[Camposdemurcia in reply to Threecats]

Thank you fir your reply. All thus information will help my husband adjust to his situation and I'm hoping that as he starts to feel the benefits of using the machine he will persevere with all these options available.

[Millyboo710]

I was put on a vpap machine when I was in hospital and given it to bring home. When I was first put on it in hospital, I had terrible trouble trying to use it, ending up in tears and saying I was never going to be able to use it. I had a wonderful nurse who was very patient and kind and we tried three different masks until I found one I could tolerate. We started off with me wearing it for five minutes and increased it until I had it on for 30 minutes. This was during the course of an afternoon. The first night in hospital I managed six hours and haven’t looked back. It is worth persevering for the sake of his health. Wishing him all the best.

[Camposdemurcia in reply to Millyboo710]

Thank you for your reply. It is very useful to know that there are a variety of masks he can try if he doesn't get on with the first one given

[LydiaRose123]

I have been using a CPAP machine for over 3 years and I have both COPD and Sleep Apnoea. My machine is a Resmed Airsense 10 Auto. I use the full face mask as I have difficulty in breathing through my nose.

It has literally been a lifesaver for me. Occasionally, if I have a nap in the afternoon and I don't use the machine, I wake up feeling hungover and I have irregular heartbeats.

Although I have complex medical issues, I have better sleep and I no longer wake up multiple times during the night, gasping for air and with a wildly racing heartbeat. I also no longer wake up with brain fog which used to last for the whole of the day.

I found it difficult to get used to at first, but now that I'm 100% compliant, the hospital only reviews me every 5 years. If I need any new masks, water tanks or other spares, I just email the hospital and they post them out to me.

The hospital can monitor your progress remotely and they can remotely adjust the machine if necessary.

Good luck to you both, and God Bless.

Lydia

[SickpeoplewithCOPD in reply to LydiaRose123]

you touch on an important point Lydia. At 86 years old - I was diagnosed with carbon retention- and had three hospital urgent admissions - until they realised the problem and supplied me with a notice to carry on me, for the para medics to work to.

I was supplied with a machine eventually - which I can only describe as my necessary friend - I am told to use him every night while I sleep. My machine is provided with a humidifier- which I can adjust to give best results.

Unfortunately, I have a deviated septum from a motoring accident of years ago. This has resulted in me breathing through my mouth for many years - a difficult habit to stop - as my nose is easily blocked.

I am down for an ENT investigation- however, current waiting lists are horrendous. As I am not allowed oxygen (only within the special parameters mentioned) this machine has kept me away from hospital for now.

Perseverance by you and your husband will get him there sooner than you think - and will become second nature very soon.

My only problem at the moment is - what happens if we are to get long power cuts this winter - my hospital have no answer to give me.

So just between you and me - I have purchased leads from the manufacturer - one to use in the car 'cigarette lighter socket' and another to clip onto a free standing 12v battery.

So fingers crossed.

[LydiaRose123 in reply to SickpeoplewithCOPD]

Hi SickpeoplewithCOPD. Make sure that you are on the vulnerable register with your local powegrid company. I am registered with Northern Powegrid, you will need to find out who your local electrical distributor company is, if you don't already know this.

I have been on the register for years and they always text me if there is going to be any disruption to the power supplies. I believe that they have contingency plans for people who rely on the power supply for medical electrical equipment.

[SickpeoplewithCOPD in reply to LydiaRose123]

That's interesting to hear Lydia - I have the same machine as you now - as my hospital changed from the original machine I was given - due to constant breakdown of the humidity system - and not being able to procure replacement water chambers.

Like yourself I have damage to my nose following a serious car accident...and ended up with a deviated septum. I believe I am on a ENT waiting list to investigate .. but with the current waiting lists - I am not holding my breath.

This accident happened some 50 years ago - and I believe the constant blocking of my nose lead to me becoming a mouth breather. Which in turn lead to my COPD and carbon retention diagnosed some five years ago. This has lead me to be hospitalised three times in the past six months. I now have to carry a card to show para medics in the future as pumping me with oxygen was not the desired thing to to. On one occasion my wife actually thought 'I had gone'.

At 86 years of age I initially found it difficult to breathe - but this new machine makes a big difference- although I do wake up during the night on occasions. It is interesting you saying your nurse can monitor you and your machine remotely - I wonder if my consultant/nurse are doing the same ...and I have not been given any advice when I may see them again...??

[Camposdemurcia]

Thank you for your reply. It is really positive to hear that many people struggled to get use to the device initially but that once they have done so, the quality of their lives improves greatly. My fingers are crossed that this will happen to my husband.

[ghousrider]

ring your local hospital where you had it from they should have technicains dept on these items they thave these people for the ebulser machines

[Camposdemurcia in reply to ghousrider]

Thank you