Climbing stairs feel like a mountain

[winterrose-23]

Hi everyone I have Emphysema also Pulmonary Langerhans Cell Histiocytosis my oxygen transfer is 37% I feel so exhausted bad headaches when do people have oxygen therapy would this help me feel better?

[Jessy11]

Hi Winterrose, sorry I can't help you but just wanted you to know I'm thinking about you.

Someone will be along soon, I'm sure, who can help with your particular condition.

Take care 🌺

[winterrose-23 in reply to Jessy11]

Aww thank you Jessy thats really nice <3

[stone-UK]

Hi

Oxygen requirements is subject to one of two test.

ABG arterial blood gasses for LTOP for long term oxygen therapy .

Or

Six minute walk test for Ambulitory oxygen for exercise and walking about.

Your respitory nurse should advice you.

Oxygen is given to maintain you oxygen levels at a acceptable level to safeguard your major organs.

88/92% is caution levels. Below 88% is cause for concern

It wil not make a huge difference to you being short of breath.

I am stage Four 22% on 4 LPM for exercising and walking.

[winterrose-23 in reply to stone-UK]

Hi Stone thanks for answering my question 22% must be dreadful for you

[stone-UK in reply to winterrose-23]

Hi

Most of the time I ignore, still go out every day shopping two local shops.

Driving to-day visited two towns purchased new scooter.

Plus I live in the first floor so climb stairs 1/2 a day, rest at half way landing.

You will not come to any harm being short of breath, apart from to many people asking are you alright.

Use pursed lips breathing, in through nose out through mouth like whistling .

And blow and go . Stop to breath in, go to breath out.

[winterrose-23 in reply to stone-UK]

That's how I breath I Stone your much braver the me lol do you get headaches as well I feel like my brain is shrinking some days an I wake up through the night do that happen to you?

[stone-UK in reply to winterrose-23]

Hi

Don't get headaches, but I do sleep elevated. I purchased a devices that lifts the pillows.

[winterrose-23 in reply to stone-UK]

Do that help?

[stone-UK in reply to winterrose-23]

Hi

Stops me from being breathless while sleeping,

Which was a previous problem.

Every little helps.

[winterrose-23 in reply to stone-UK]

I'll have to try this thanks again

[winterrose-23 in reply to stone-UK]

When did you start to use oxygen Stone what % were you?

[stone-UK in reply to winterrose-23]

Hi

24% could have needed before.

It was the Respitory nurse that suggested testing.

GP no longer do oxygen so don't really notice.

My initial test was a quick walk down a corridor my stats dropped to 83%

I was retested by the oxygen team at hospital who I see every six months.

[winterrose-23 in reply to stone-UK]

Wow thats low I get tested about 3 monthly have an appointment next week

[potterman7 in reply to stone-UK]

Hi stone this my first post like you I'm on oxygen ,24/7--'my problem

was I kept dropping to my knees ,cut it short this is my 6th admission (I'm in hospital now)

When I walked or did any thing,my oxygen level was down in the 70s

Had scan waiting result,,looks like thybroi so(spelt wrong)

[Hidden]

hi there don't the hospital proved an oxygen tank for you to help at home, please i'm not a suffer on this site so this is why i'm asking i know someone that had a oxygen tank at her home hope this helps take care kindest regards Alan

[winterrose-23 in reply to Hidden]

Thanks for answering Bigian Im struggling most days I have another hospital appointment next week going to ask

[Hidden in reply to winterrose-23]

hi there hope all goes well let me know how you get on, its a shame such a nice person and at a tender young age to be suffering this way without an help take care Alan x

[winterrose-23 in reply to Hidden]

I will thanks

[Hidden in reply to winterrose-23]

it will be nice to hear how you get on and hopefully become friends if you would like that Alan

[winterrose-23 in reply to Hidden]

Yes we can

[Hidden in reply to winterrose-23]

thanks look forward to getting to know you take care Alan

[potterman7 in reply to Hidden]

Hi big Alan would that be for liquid oxygen

As I have oxygen concentrator an small bottles

[Hidden in reply to potterman7]

hi there no what your on is what they would give you unless the decide that you need liquid oxygen but please see your doctor first and may i point out i'm not a doctor its just things i've learnt over the years hope this helps take care Alan

[Hidden]

My lung doc nurses did say i could try ambulatory or suplamentry oxygen BUT I told him am not at that stage yet ... Nothing more was said on mater

I guess you could run it past doc say ya sick of ya heart throwing speed wobbles technical name I think is plumary hypertension

gwh.nhs.uk/media/150962/3-3...

[Hidden]

Good Morning - My husband suffers with severe COPD - about two years ago he was at an assessment for pulmonary rehab and doing the six minute walk test when they noticed that his sats were dropping to 80%. Apparently if your oxygen levels drop below 88% it can cause damage to other organs over a period of time. He was prescribed oxygen by the nurses at 2l when he is walking etc. The difference for him has been fantastic - he can actually get on with things. For him it happened by accident - the doctors have never mentioned it, he hasnt been referred to a consultant but thankfully the nurses were able to see it.

It certainly should be something you discuss at the hospital appointment. Good luck xxx

[winterrose-23 in reply to Hidden]

Thanks for replying TADAW I will ask at my next weeks appointment I'll let you know how I get on

[Hidden]

not sure what this means !!! but your very welcome if it helps Alan