Oxygen ....Pros and cons

[Boeta]

My meds does not help much...it is time to move to the use of oxygen...it is time to make an informed decision...does it really make one feel better? Please tell me more...

[Boeta]

Sorry just saw topic about this here...related posts

[Mandy6513]

Oxygen is only usually given if your stats fall below 88 on a constant basis then oxygen is given to protect your major organs . They would give you an ABG blood test to see if you need it . If you haven't had one of these it's where they take blood from the artiray on your wrist.

[Boeta in reply to Mandy6513]

Thank you so much...guess I do not need this...had extensive tests on gasses in blood before procedure to remove kidney stones recently...the last time my stats were measured it was 92-94.....somehow I just feel that oxygen can help me...my specialist is dead against this and says....i must not now become too dependent on this..let the body still do its work while it can....

[Mandy6513 in reply to Boeta]

I've been on oxygen years and I hate it with a passion . Some people think it helps with breathlessness but it dosnt although psychologically it may a little. X

[Boeta in reply to Mandy6513]

My dear...your response mean a lot to me....you've been through the mill...at the end you can talk from your experience....

[Mandy6513 in reply to Boeta]

Bless you I'm happy to have helped x

[SquirrelsHolt in reply to Mandy6513]

Hi Mandy6513 , so great to see you are still checking in on the odd occasion. Sincerely hope your health problems have reached a

plateau and you are no better but most importantly no worse? Reading your comments regarding our living hell , of being full time oxygen users and all that goes with it,I wondered,if after a few years of using O2, do you still get embarrassed when you are out in public or have you been able to rise above your emotions,and nowadays it's not a problem?

I'm afraid that i try not to appear bothered by my blinking nose hose,but can almost count how many strange looks I get and that's walking from the car to the supermarket entrance!!

Do you think it's just ignorance or down right nastiness as we are such easy targets? Sorry my post is on the downside,I apologise.

[Mandy6513 in reply to SquirrelsHolt]

It's so good to hear an honest view like that. People pretend they are ok and some people do cope well on oxygen but some don't. I would go out and avoid eye contact with people which isn't my personality but I couldn't bare those states. I'm on NIV 22 hours a day now so only get out for appointments and things . I'm on the transplant list hoping and praying every day I will get that call but it's been almost two years... Xx

[Boeta in reply to Mandy6513]

Do not loose faith...things will happen as it should...yes a bit woo-woo but what else can i say...you seem like a very strong person ..God bless and may the most important thing in you life, I am sure, come true...

[SquirrelsHolt in reply to Mandy6513]

OMG Mandy6513 ... You say you've been on the tx list for about 2 years now? If that was me,I'd be sitting by the phone each day awaiting the call that possibly could change my life. The mental stress and strain surely must be very hard to deal with and 2/years is such a long time. Are you on NIV 22 hr's a day now.... Does that mean you retain most of the CO2 and wear your NIV and on top of that you've got to wear your nose hose for your oxygen levels to protect your organs ? Its a blooming unforgiving world we now live in. Did your respiratory Con give you any idea on how much longer you may be waiting for your tx.?

I really feel for you and think that you must be one hell of a strong lady to endure all that you have. Also I trust you have a good network of family and friends around you. I know how lonely this disease can be and its so easy to isolate oneself etc.

So glad you've posted on this forum again. Please do pop in whenever you can as you have a wealth of experience and your knowledge about all things lung related is so valuable,especially to new members, who need some guidance etc. Think I'm trying to say,stay with us whenever you are able and of course I wish you all the best and that phone call comes any day soon too.

[Mandy6513 in reply to SquirrelsHolt]

Yes to all the things you asked. It's draining waiting for that call but unfortunately I have very high antibodies so I'm difficult to match. I'm just praying I get the call this year xxx

[jackdup in reply to Mandy6513]

Very good to hear from you and I pray you get that call soon as well.

[Mandy6513 in reply to jackdup]

Thank you so much x

[Chestyblocked in reply to SquirrelsHolt]

I understand I used to get so embarrassed about breathing badly and Now I have to begin ambulatory Oxygen There so much to being perfect I used to work with Learning Disability and the horrible stares we used to get. Its like watching the freak shows I guess I know I need the Oxygen So Here we go

[Joy123 in reply to Mandy6513]

We are all different as oxygen definitely helps me with breathlessness, without it I'd be chair/housebound, with it I do most things for myself. I'd certainly be happier without it, I too hate it with a passion but it's keeping me moving. Joy. x

[Mandy6513 in reply to Joy123]

Hi Joy. Yes your right we are all different. I was trying to say nobody would be put on oxygen for breathlessness it's only given to people who have low oxygen in their blood which an Abg would show. Take care x

[caroleoctober]

I use oxygen 14/24 and when I go out. I have never had rude remarks only positive ones like it's nice you can get out and about. I am usually on my mobility scooter or with my husband who carries my portable concentrator for me. I don't get many stares only from children which is understandable. I don't know where you live but we are quite rural and the local town that I visit is considered to be a bit 'way-out'. Keep smiling

Carole x

[sarcoid123 in reply to caroleoctober]

I agree with you caroleotober. I am on oxygen when I go out and no-one has been rude; if one or two people stare a little I ignore them, and I expect I would do the same, but it doesn't mean they are unkind. I find that everyone I talk to in shops etc just ignore the tubing. Of course, children do stare, but that is to be expected. We are so fortunate in England to have oxygen delivered to our house at no cost because of the NHS.

[Catnip]

Greetings

If you need oxygen, you will get it -- it depends on your SATs results. I started with oxygen ten years or so ago, just ambulatory. Now it's full time and higher levels. The best thing is, it keeps me alive and doing things. I may not like the Darth Vader effect from my conserved, but it gives me five hours more time out, than without it!

Please don't confuse being/feeling breathless with the need for oxygen. They have nothing to do with each other. If you feel breathless, use your inhalers. Oromorph helps too (but watch out for constipation ).

Just exercise, eat properly, drink more water -- and enjoy life.

Catnip

[Boeta in reply to Catnip]

Thanks....all this helps to make informed decision...in time before...before i land into more trouble...