My first time post, but have been following for some time.
I have severe Empysema, with FEV at 20%, have been getting more breathless by the day. I recently visited a Respiratory Specialist and have been referred to the local hospital for an assessment for oxygen.
As I know others here on this website are no oxygen and I would appreciate any feedback of how you are finding it, does it take a lot of getting used too ? I am so breathless now that I am really looking forward to having some respite and a bit of hopefully return to normality.....if thats possible.
Thanks in advance, incidentally I am posting from New Zealand.
Look forward to any response.
Written by
Dampier
To view profiles and participate in discussions please or .
I am in the same situation as you and am waiting to see some one about Ambulatory Oxygen. If you can get on to YOUTUBE there are a few videos about it. I too would like a bit of information about it.
I am same as you suffering from Emphysema and with a FEV1 of 19% but have been on oxygen for many years now. Started off at just 15 hours a day but now 24/7 and I could not manage without it. Yes it takes a bit of getting you, as find yourself treading on the tubing and tripping over it but you learn to be more aware. For going out and about I find the cylinders a bit heavy with me being a woman, so I bought a mobility walker with a bag on into which I pop the cylinder and then push it around. Be patient take your time and enjoy the new things you will find you can slowly do. Best of luck
Welcome to the forum. I too have severe emphysema along with heart failure. I am on oxygen 24 hrs a day. Initially it was very awkward for me to become accustomed to trailing an oxygen tube around with me wherever I went. It used to get caught around obstacles and sometimes bring me to a sudden stop , nearly pulling my ears off! I looked on the whole oxygen thing as a curse, but after a while , realising it was keeping my vital organs alive , I began to change my opinion and now look on it as a necessary friend.
Initially, I was reluctant to take my "friend" out in public. Yes people do sometimes give you a longer look than necessary. but I smile at them and always receive a smile back or a friendly "hello"
My main ally in my life is my positive attitude. Each day is a blessing to be celebrated. I am planning my future, not my funeral!
I hope this has helped you to begin to come to grips with a new way of living. You will get used to it.
Feel free to send me a private message and I can maybe help you through this worrying time.
Okay Geronimo - I will certainly be calling on you - my appointment is on the 29 October at the hospital - to have an assessment - this is thanks to my specialist referral, from what I gather it is not easy to be granted oxygen - certainly feel bad enough but wondering if I will meet the criteria on the day...
It was difficult for me initially, and I must admit to getting annoyed with the tubes and tank sometimes, but without it my quality of life would be extremely limited.
It will be okay, and don't forget your hospital will support you whilst you get used to it.
Hi Dampier, Welcome. I too was desperate to have Oxygen my SOB got so bad I knew I would use it Correctly once explained. I have been on 02 for over 3 years now, my FEV! is at 32% an increase since my Valves Procedure in June. I still have to have 02 for 15/16 hours a Day, most of this time is taken over night, I am quite comfortable sleeping with the Canula in my nose. I do have a small Mobile Concentrator which is such a gift from our NHS. I feel so well with 02, and stay Positive every day. Doesn't bother me in the Least when out shopping, Go with a Good Positive outlook, you will be fine. XXX
Great attitude, funnily enough at the moment have not had problems at night, in fact it is the best part of the whole thing. It is the day time where I am suffering.. like the idea of a small mobile concentrator then would have more freedom. Thanks Hacienda for taking the time.
I am on oxygen practically 24/7 and agree with all the foregoing oxygen user's comments. Whilst not a cure for breathlessness, it will help it enormously during any activity and give you more confidence in coping with being S O B and, importantly, help to protect your vital organs from oxygen depletion. I personally have also found that I have gradually built up my tolerance level (a mental strength thing) to the often torturous breathlessness when trying to do the everyday things that most people take for granted. I have a portable oxygen concentrator for outdoors, courtesy of the NHS and find it a tremendous help.
One other little thing to add to the treading on the tubing etc, if you happen to have a cat or cats, like me, there is every chance that it will attack or play with the connecting pieces of the tubing as you move around, mostly funny...sometimes not.
Thanks for the response, I am sure I will get used to it, if I am granted oxygen, my specialist has sent in the referral to the hospital, for an assessment, roll on the 29th October for my appointment.
No cats or dogs in this house so won't have that hassle, and will just work on getting used to it - when you say you still have extreme breathlessness, is this even with the oxygen ?
I am on oxygen for the last year due to COPD/Emphysema. I use oxygen overnight 12hrs and sometimes going out however I purchased an Inogen 3 unit double battery which gives me 9hrs oxygen. I have used it for holidays as it it accepted by airlines. I also use it going out as it comes in a carry bag and is less noticeable than the hospital ones and gives you freedom. I find I feel better on the oxygen particularly doing housework although I am limited in what I can do. Don't be afraid of oxygen, I was in the beginning but realised I needed it. Good luck with your assessment.
Extremely interesting thanks so much - yes looking forward to the assessment. The strange thing at this point is am very breathless during the day, but comfortable when sleeping..., which seems strange. Anyway, that not a complaint of course...
Dampier welcome,i am in a similar situation as you with very severe Emphysema and a lung function of 22% but fortunately without any inflammatory aspect,so no coughing or copious amounts of mucus and like you i also sleep well at night without oxygen .
The assessment is quite simple and will determine how much and when you require Oxygen for vital organ protection,once again fortunately i only require it for ambulation and exertion and with the right combination of equipment be that cylinders both static and portable,home and portable concentrators you will find that oxygen will become your next best friend and open up your life again.
Yes thank you - am hoping for exactly as you describe in terms of your oxygen. I am so grateful that I am able to got to bed at night and sleep through...am looking forward to my assessment. Thanks again.
Hi Again, just wondering how long you have been with oxygen, as you appear to be in a very similar position to me. And at what stage was your emphysema ? I am currently on one a day, Ultibro, a 24 hour slow release, also flixotide (I think has a steroid base), this taken twice a day, then salbutamol (ventinol) as required. None of these seem to work anymore, and I am constantly taking the salubatamol which is really a rescue remedy and supposed to last for a few hours, but not really working at all any more.
Just reply when you have time, it is not urgent, I am just curious.
Dampier,i have been on ambulatory oxygen for about a year now.i suspected i needed oxygen but my respiratory team didn't investigate thoroughly so perhaps i should have commenced about 18 months ago.my fev 1 was then approx 22 % and as i demonstrated to the team i desaturated on exercise so bloods were taken and my thoughts were proven correct.
On a day to day basis i do not suffer breathlessness per se but have periods when no gas transfers take place and i can't take in oxygen so i just have to rest until matters rectify themselves.My emphysema is of a non inflammatory nature so i do not suffer from copious amounts of mucus and rarely have infections,my only medication is an inhaler called spiolto respimat,a double therapy bronchodilator that contains no steroids .i find that the so called rescue inhaler Salbutamol is useless for my condition as the airways are already open and are just not releasing the gases required.my consultant confers with my description/opinion.
We are all very different with our conditions and your assessment should go a long way in determining as and when oxygen will assist you best in daily living,please keep us up to date with your process and outcome and ask of us anything in which we may help.
I’ve been on oxygen for many years for ambulatory purposes. It’s easy to get used to but a word of warning. Oxygen doesn’t make you less breathless it just protects your other organs from shortage of oxygen but it is a life saver. Good luck
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I have COPD. & Asthma
COPD & CPAP
Covid or copd
Teeth Extractions with severe Copd
COPD
