bit worried

[Loveroftwist]

awful time ! Just newly on oxygen and finding my prescription isn’t enough for my needs struggling a bit using inogen and oxygen bottles, getting anxious and finding it hard to sleep, when I relax enough to sleep end up having coughing fit and then oxygen dips .Only meant to use it on exercise but need it now just to get around house ) My wife’s been helping me but sadly her father is very Ill and close to death so she has had to fly out the country to see him , leaving me alone which again I am very anxious about ( I am also type one diabetic as well as having pulmonary fibrosis) , seeing oxygen nurse next week so will hopefully sort my prescription out and help me with my breathing. Just need some reassurance a bit

[Patk1]

I'm sure u know anxiety,being tense reduces 02 levels.if ur not familiar with controlled breathing techniques,do read up on thm + practice & use as it helps t maintain 02 + reduce stress.id make a list of bullet pts for nurse.make relaxation a priority using whats best for u - breathing,music,mindfulness,tv,reading,gentle exercise xx

[Loveroftwist in reply to Patk1]

yeah not been taught controlled breathing at all yet , thanks for your help

[Patk1 in reply to Loveroftwist]

It's worth reading up on.it does help u to focus on breathing.hope u get some sleep x

[Hobbledehoy in reply to Loveroftwist]

Lung and Asthma Association vg. Shortcut, even if temporary: breathe into your tummy.

[CDPO16]

Hi, I would consider getting around the house is exercise so don't worry about using your oxygen to do that. I am on ambulatory oxygen but use it while I'm getting washed and dressed. My nurse says this is the equivalent of walking about and agrees with my use for that activity.Good advice from Patk1. Make a list of concerns to discuss with your nurse.

I'm sorry that your wife has has to leave to be with her father and understand how being alone is worrying you. Best wishes.

[Loveroftwist in reply to CDPO16]

thanks for your reply

[dogwork123]

Hi sorry to jump on your thread but I've been looking to find out about home oxygen, what's involved etc, at the moment I need it but ot prescribed it yet waiting on consultant appointment next week. I haven't been out of the house since September as I can't breathe and walk. Lost weight, very frail. I've been in hospital 3 times I last 3 months with flare ups. Hoping someone can help. I have scar tissue from epysyma COPD. Many thanks

[Karenanne61 in reply to dogwork123]

My understanding for home oxygen is that you have a home assessment. The tx consultant touched on it last visit but I don't think I need it yet. It doesn't necessarily improve breathing but delivers oxygen to other vital organs. Have a chat to the consultant.

[Loveroftwist in reply to Karenanne61]

I’ve got oxygen to use on exertion at home , but didn’t have a home assessment

[Karenanne61 in reply to Loveroftwist]

Oh! This is the differences between health authorities I suppose.

[Bevvy in reply to dogwork123]

Why don’t you set up your own post for this question? That way people are more likely to come along and specifically answer you. Otherwise your question risks being swallowed up in this thread and either not being answered or you not seeing the answers.

[Alberta56]

Sorry you're in such a sad and difficult place at the moment. There is information on ACB (Active Controlled Breathing) therapy on the internet. A lot of us find it helps.

[Loveroftwist in reply to Alberta56]

thanks

[Tykelady]

Your oxygen nurse will increase your prescription if you need it. I was originally started on two cylinders but once my confidence to go out and about increased I asked for more and was given six although I try to keep two in reserve at all times. Baywater Healthcare are a marvellous provider and replenish the next day with just a phone call. Good luck.

[Straddie in reply to Tykelady]

breathing techniques really are the way to go, as everyone else has said. Can you get codeine? It really does help stop coughing . I find it invaluable but try to only use it if it’s really important. You can only get it on prescription but cocodomol is nearly as good and can be bought across the counter.

[Tykelady in reply to Straddie]

I think your reply was meant for Loveroftwist x

[Loveroftwist in reply to Straddie]

not tried codeine , was prescribed paracetamols for pain but not codeine

[Straddie in reply to Loveroftwist]

a locum GP suggested it when I told her I was having terrible coughing fits. I have used it also before medical procedures : a cataract being removed and a squarmous cell carcinoma being removed. Both times I was anxious about coughing while the surgeon had a scalpel in his hands! Worked like a dream.

[Fribox in reply to Tykelady]

I've been on oygen for about six weeks.I was thoroughly assessed before prescription was sorted.You should be feeling much better on it.I do an online chair yoga session and leant very good techniques for breathing.Need to talk to the nurse about other techniques as well.Have you never been offered pulmonary rehab?The best thing I ever did when initially diagnosed.Good luck with everything...Suex

[Tykelady in reply to Fribox]

I think your reply was meant to be for Loveroftwist

[Loveroftwist in reply to Fribox]

I was assessed but wasn’t very thorough just walked up and down corridor and nurse said I think you should have this much ! Have been referred for pulmonary rehab but so far had no appointment through.

[Lor53 in reply to Loveroftwist]

Almost identical to my experience! Started on ambulatory oxygen in August, but now finding myself having to use it more and more about the house. Any significant exercise, like going up one flight of stairs and my sats drop from about 90 onto the low 70s

[Loveroftwist in reply to Lor53]

that’s what’s happening to me hopefully the nurse can sort it

[mauschen]

phone your oxygen nurse

[Geoffu]

Hi, worrying about inadequate oxygen availability cannot be helping you to live with this condition. I suggest that you contact your nurse or GP urgently.

I have a weekly delivery of cylinders, and if I need replenishment ahead of their normal visit I merely call the supplier (Baywater, excellent company for our area) when I'm getting low , and they have them here next day. I also have 2 concentrator machines, one in the lounge and one in the bedroom, so I only use cylinders when out of the apartment.

Geoffu (asbestosis)

you

[Caspiana]

Hello there. 🙂👋 It must be very scary to be on your own during this time. Would it be possible to ring the nurses and explain your anxiety and maybe have them pop in more often? Do you have neighbours who could just pop their head in to say hello? And maybe you are entitled to carers?

Regarding oxygen, having been on oxygen myself, I must tell you that oxygen does not necessarily remove your breathlessness. It is there to to make sure your vital organs to not get starved of oxygen. As a rule of thumb you should only use oxygen as prescribed because too much oxygen can cause hypoxia for people who retain carbon dioxide. The reason we are evaluated and told how much oxygen we should be using daily is for our own safety. We should never adjust oxygen usage or levels without consultation. My advice to you is not to make the call to adjust your oxygen usage without medical advice.

As for your anxiety you must talk to your respiratory nurse they can give you guidance and make recommendations to help you. Try to pay close attention to your breathing instead of trying to breathe rapidly as that only increases your anxiety more. Focus more on your exhale. It has a calming benefit. This is called breathing from your belly. Used pursed lip breathing. I found that really helped me.

Please keep us updated. We are always here to help. Best wishes to you.

Cas xx 🐕🙋‍♀️

[Loveroftwist in reply to Caspiana]

thanks

[Loveroftwist]

hard enough to get one concentrator at moment they keep telling me and cylinders are being delivered quickly just not enough as nurse who assessed me ( very quickly) said that was all I needed, but hopefully I can get this altered