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British Lung Foundation
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Oxygen

Hi does everyone with emphysima end up on oxygen

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I hope not

So do i but needed to ask

Hi Emily Welcome Back, Hope your ok, I would say to your Question: Depends on The Patient/Emphysema is in different parts of the Lung as mine is at the Bottom of my Lungs, and my FEV1 is very low at 26%, then I need the Help of Oxygen. I would love to say "Hey" I have reversed the dam COPD, that will never happen, so we make the Best of what we have and Stretch our Lives that bit Longer. Love n Hugs XXXX

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Hi thank you ....hope you are well...

Hi I know it won't reverse damage done is done...just interested in the oxygen side

Only your Consultant can advise you Hun. Did you have a good Holiday in Spain, I was thinking of you and how you are getting along. I'm with my Consultant Tomorrow. I had a Bronchoscopy the other week, waiting to see when I go in for a New Valve, sooner the Better. Take care Emily. Xxxx🌹🌷

Consultant said I didn't need it although sats drop on walking but recover well. Had a fantastic time the air there was beautiful not breathless once...food fantastic and hotel had a small gym...back to reality.

Good luck with consultants appointment...xxxx

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Out of interest which side are you having valves fitted ?

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Hi Rich, I'm having them as before in my Right Lung, See my Consultant at 4 pm today for an Admission date. xx

I’ve been talking to the research team I do trials with and most people ( it seems ) have the left side done . Your the first one I’ve asked 🙈😂.

All the best for later

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Hi Rich, Just looked at our old Comments on Valves & Transplant. Have you decided about Transplant? I hope this time the new Valve works as good as the First Procedure, Won't know till later after my Next X Ray today at 4. I had a CT scan about 2 months ago followed by A Bronchoscopy, They couldn't find the 4th valve, Swimming around somewhere ? Any way, will keep everyone posted. take care Hun. xxxx

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Hi Hacienda hope alls well , last week I went into the research building at Glenfield Hospital to finish of two trials I’d been on . They had arranged for me to have a conversation with my consultant ( one of the top bods at Glenfield) he was fantastic and explained numerous things and showed me all my Ct scans and told me my levels had remained much the same over the last 10 years . Although FEV 1 levels don’t mean a lot they are a guide and mine have remained at 36% going down to 29% when I was admitted to hospital. Also my oxygen levels have remained at 88/89 so he told me if he was a betting man he can’t see me getting any worse and a transplant will hopefully not be needed . He also showed me on my right lung how it had broke down and would not be suitable for valves and if I had lvrs it would mean them taking away at least 2/3 of that lung which to be honest I’m not keen on . The valves I had fitted a year ago on the left worked and I could possibly have more fitted , which I may consider. I was with him for over an hour and could not have been any happier with our chat , I feel very lucky 🍀 .

I’m now going on a trial to take an experimental and currently unlicensed drug to treat copd with the aim of reducing the number of exacerbations people have . It will last for over a year so plenty of free health checks and to make it better it’s a paid trial .

All the best x

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Hi Rich, Well , Great News for you, I'm well pleased. To stay stable for 10 years must be down to your Positive outlook. Your FEV1 at 36% is good, I believe mine is now 21% which is too low, hence why I am not having my next valve... I posted Yesterday. Please keep us updated Hun , As I always say, You have to remain Positive and do everything the Professionals tell you, Exercise, Good Diet, Above All Stay Happy. Take care Rich. xxxx

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Thanks , your dead right with your last paragraph. I’m very positive although I do feel a for my family who seem to have been dragged into what I’m prepared to do or not do 🙈. It’s not just the person who has copd it effects and sometimes I need to remember this . My Mrs often thinks I’m going to pop my clogs when I’m bad whereas I know it’s just a blip .

Here’s hoping you get good news sooner rather than later x

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Hi hope you are well...thank you for your response. How is work

No not everyone needs oxygen therapy.

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No as a matter of fact those with mild aren’t even on medications. It is a very individual disease. I honestly believe that no two are alike ..... just saying

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I actually am fighting properly now

..and if we progress

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I am mild and I'm on meds. x

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Sorry Hypercat I meant there are many with mild not on meds not all as I personally know folks with mild that are not on inhalers and know folks with mild on inhalers so I’m going to blame it on spellcheck lol

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😁💖 x

I was given steriod inhaler and a reliever as soon as I was diagnosed I didn't have breathing problems just chest infections I don't think inhalers were given way to soon

Hi Startover1, I agree with you. I wasn't having breathing problems until they put me on inhalers

How scary I wonder if I didn't have the inhalers untill I had breathing problems whether I would be this bad they appantly now saying I should come off my seretide as they now believe steriods not helping 😠 bit late ay

Yes it is after you've been through all of that. I have an appointment with my pulmonary doctor on Wednesday and I will ask all questions about my condition also get copies of all test results to compare with hospital record I'll see the difference. Take care Startover1.

Bless good luck peppy 05 wish u well

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Hi how are you doing....I realise the individuality of this disease...sorry I meant as we progress

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I believe “if” sounds much more positive lol

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IF is more positive you are correct...I realise since joining this forum I have been searching for answers, that no one realistically can provided. As none of us truly knows what the future holds. I have read a lot of inspiring stories of courage and strength. Stories of sadness and despair. I am unsure if I will ever find what I am looking for

Redsocks you are challenging negative behaviour and that is brilliant. I would like to wish everyone the very best in their personal journey.

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Sorry Emily,with lung diseases there are no definites and one person even moderately staged may require oxygen therapy almost continuously whereas another like me at the very severe range only requires it for exertion.but at the moment i think with your condition and your general state of wellbeing it is a question you won't need to ponder for some time to come.

Best wishes Ski's and Scruff's x

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Thank you

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Emily.you are like a jack in the box,one minute you are Emm then you are hidden lol we prefer the Emily. :) x

I would like to thank you for you realistic response..I guess as I have said to red Sox I am looking for answers no one but God can provide.

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I'm Curious, Why have you "Hidden" again Hun. ? xxx

Yes why have you gone? x

Hi, It really is very variable. 8 years ago my sats were dropping on exertion, though recovering quickly. No oxygen prescribed.

2 years ago sats dropping on walking, no recovery unless I was sitting still so Ambulatory oxygen prescribed, which has helped me a lot, a lot less fatigued.

I can achieve a lot with it, knowing that it is keeping all major body organs in a healthier state.

By the way, still only stage 2 ! 😊

Wishing you well.

I had two uncles,both worked down the mines all of their working lives,they both never stopped smoking and ended up having to have oxygen due to lung disease caused by cigarettes and pit dust but I’m not sure if it’s a definite that we end up on oxygen due to emphysema...fenty.

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Since April if you smoke they will refuse to give you oxgen

ha, i hope like hell I don't get there. Most of my as well as myself developed heart problems as a result of COPD and dropped dead as their heart gave out. I have developed a heart issue but would rather go out quickly then dragging around a tank and starving for oxygen.

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