CPap machine

[Eve3066]

I was diagnosed with COPD 5 years ago whilst still working and sleeping so badly I could hardly stay awake at my desk. I was given a CPap machine by the Brompton hospital and have never looked back really. Apparently my oxygen levels drop so low during the night that I keep waking up in a panic although sometimes I wasn't really even aware of it. Iam. Still using it and wondered if anyone else had any experience of using one.

[Kath-Hope2Sleep]

Yes, I use a CPAP as I have severe sleep apnoea, but don't have COPD. I used to have mild asthma before getting diagnosed and treated for sleep apnoea, but that now now gone away. Am so pleased to hear you got spotted for sleep apnoea, as many people with COPD and other medical conditions also have it, but assume their symptoms are due to their condition. Glad you have a positive experience with your CPAP

[Eve3066]

Thanks for this, do you get on well with your machine, does it give you any problems, do you use a nose mask or a full face mask .

[Eve3066]

Is it connected to copd

[eepee8]

Since having complete respiratory failure in 2010 I have used a CPAP machine. Guy's and St Thomas support this. I have been told they wouldn't support this in my own Trust!!! I am also on oxygen 24/7 and I use it as I am a retainer and it helps to get rid of t he carbon dioxide. It took time to adjust sleeping with it but I now probably wouldn't be able to sleep without it. I have a face mask covering nose and mouth not the full face mask. There are several types and you can try them all until you get the right one for you.

[Eve3066]

It's really unfair the way the post code dictates what assistance you get. When I lived in London I went to the Brompton hospital and they did sleep tests and gave me the CPap machine, they also keep seeing me even though I am now in Suffolk. They even pick me up for annual checks or any other time I need to see them. I questioned this and said I would go to Ipswich hospital but they insist that I go back to them. I have to admit that when I went into ipswichhospital earlier this year with pneumonia , I took the CPap with me and I was the only one using one. The nurses thought it was so strange and non of the other patients even knew what it was although many of them could have benefitted from it.

[Offcut]

I have sleep apnoea symptoms and my O2 drops when flat and it took my cardiologist and myself to even get my doctor give me a spiro test! I am seeing my doctor today to discuss as the nurse would not tell me anything. Other than I am below the normal bottom line? and my fev1 is 1.76 and should be 3.3? I have not had a good nights sleep since my spell in hospital in 2008.

[Eve3066 in reply to Offcut]

Why dose. Have to go through this, that's what I felt and I felt the consultant that I saw was kidding me when she said the CPap would change my life, it did and still does. No more mad propping up with pillows etc and no more sleeping in the chair when it's really bad. I also have to admit to putting it on to change the bed sheets, it stops me getting so out of breath !!!!!

[Offcut in reply to Eve3066]

The mantra of my doctor is "It's your heart problem" The fact that my lung infection in 2008 was so bad I had to in one day have 6 units of blood because my lungs were bleeding so bad. the fact on the first day they inserted the first drain they took 3.5 litres of fluid of my lungs and a minimum of 1 litre every day after. The fact I was on an Oscillator for 10 days which has a 48% mortality rate and left me with PF and a Paralysed diaphragm. the Fact that I was in ICU for 32 days. The fact it was over 2 years for the fluid on my lungs to be acceptable.

Sorry for the rant

[Eve3066 in reply to Offcut]

Oh god this makes my problems seem incredibly insignificant. I can't believe you have been through all that. I will never complain again (well perhaps only a little bit)

[Offcut in reply to Eve3066]

It has not been until the last year or so that I have really felt unable to do things. I have it seems I have had to battle for everything at the moment. I know what I was capable of doing and what I can do now. I did not give up well paid work for fun. It's good to have a rant now and then. Might have another today when I see doc

[Eve3066 in reply to Offcut]

Well he'll go for it, one of the things I hate about being like this ids the way it makes me feel so diminished

[appyalison in reply to Offcut]

Hi offcut, I just don't understand how some people have such a hard time getting the right treatment. Good luck. Alison

[Offcut in reply to appyalison]

Well it looks like he has mellowed after the spiro. He has agreed I have respiratory problem and is not my asthma. I have scaring to my lungs both inside and outside, which has given me 53% lung function. So I now have to take Furosmide water tablets for a month to see if that helps when I am flat? He stated that my graph showed that I was consistently bad even after my salbutamol blast. So now I have 15 prescriptions for at least a month. Maybe after my pace and ablate it might improve things?

[appyalison in reply to Offcut]

I really hope it does improve for you. Several of us on here have been taken on a long, dreary, slow journey to get diagnosis and treatment. The time taken is not likely to improve our lungs is it? I am still waiting for a definitive diagnosis of lung problem. Current thinking is that I have 2 lung problems but no treatment yet as i may be referred to a professor in Bristol. Good thing about going up blind alleys is that i appear not to have lung, breast or bowel cancer but i do have moderate diverticular disease, very large ovarian cyst, cataracts in both eyes, hiatus hernia and reflux together with my asthma and hypothyroidism. So, I am awaiting operations but lung nodules, breathlessness and exhaustion not going anywhere as yet. After years of feeling unwell and being really unwell for the last 3 years, I feel quite down at times but i can't change it on my own so I just keep on trying to do what I can to keep well. Some days that is not much. A big thing for me was not being able to work any more, leaving us v short of money to bring up our granddaughter. I know doctors are busy but they could be helped to a quicker diagnosis if they just listened to what we tell them. Good luck with your medication. Let us know how you get on. Alison

[Offcut in reply to appyalison]

It was the battle to get them to even look at it that got me. I have been asked by doctors in hospital for years if I have COPD to tell them I do not know? It has been my cardiologist that continued to fight my corner for answers. As they have said you do not give people oxygen when they are flat and at rest unless there is something wrong? I hope that I can go though the night without waking because I am gasping for breath? I have just got to get them to look into the fact I worked with asbestos and if it was the cause?

[appyalison in reply to Offcut]

Yes, I think you are right to ask about asbestos. I think Asbestosis is a particular type of lung disease so they should be able to tell if what you have is in the same family of environmental lung disease. It was a cardiologist who originally referred me to the lung consultant after finding a problem with pulmonary artery and fixing me up with a CT scan. The horrendous and persistant cough with many bouts of steroids and antibiotics appeared not to indicate lung problems with the GP for 18 months. Funny that! Hope they get you sorted quickly now. Alison

[Eve3066]

I know it seems so unfair,, my GP here was not happy that I was still going to London but when I see the difference in treatments offered I am glad I have stayed with the Brompton hospital. He actually has to ring the hospital when I go to see him to find out what to give me. When I was really quite I'll he would not believe me when I said I needed two sorts of antibiotics AT&T he same time until he rang up and they confirmed it. Battle on

[Belcraig]

I am waiting on my cpap and I hope to feel as you feel now I am scared to sleep at night, how long had you to wait till you got your cpap, I look for a letter from the hospital every day, waiting 2 months. Glad your feeling good,

[Eve3066]

I did not have to wait long but it depends where you are I suppose. Good luck and persevere when you first get it, it's easy to give up but I find it difficult to sleep without mine now.

[mauschen]

I am the same, I would let you take my designer handbag before I would let you have my CPAP machine

Take care!

[mauschen]

I wouldn’t swap my CPAP machine for all the tea in China! For me, it’s been the best thing since sliced bread!

I don’t have COPD , I have Upper Airways respiratory syndrome (UARS) and get a mixture of obstructive and Central apnoeas with many hypoxia episodes.

From my trial, overnight in the sleep clinic in 2016, I felt an immediate improvement. For the first time in years, I had actually slept and it felt so good.

I am now on CPAP with CFlex although I am not really sure of what Cflex is supposed to do. No one explained, it happened when I was changed over from Resmed to Philips dream machine.

One word of advice, keep your machine and tubings clean. Set up reminders in the downloadable Apps or on your phone to exchange filters, masks and tubings when due. Get a printout of your settings to keep with the machine in case you are travelling or in an emergency. I keep a printout of my medications and major diagnosis with my machine plus a letter from your doctor/hospital saying that it is necessary for your condition, so that you can take it on flights.

I wish you well and hope you continue to improve.

Take care!