Oxygen & Diffuse Systemic Sclerosis

[cheryldn]

Hi all

Well I have had a appointment today with my local Respiratory dept at the request of Mr Bierne (Leeds Rheumatology). I had 6 minute walk test whilst hooked up to an oximeter to my ear. Only got as far as 2 mins & my saturation level had dropped to 84! Then I was hooked up to a portable oxygen cylinder, did the same test & levels around 94-97. Is anyone out there using oxygen regularly?TIA

[Mlw79]

Good morning, this sounds exactly like my experience and I have used oxygen for two years now. It’s been incredibly liberating and allowed me to stay mobile in and out of the house, I have liquid oxygen and that is great since it is lighter to carry and lasts longer. Once I got over the embarrassment (I’m 41) of the tubes and the device I haven’t looked back- go for it!

[LMB1366]

Hi I am on oxygen and carry a cylinder in. Backpack. It helps me maintain my independence. I am on. Heavy continuous flow and have recently had a CT scan to check my lung deterioration. I have Systemic Sclerosis with interstitial lung disease. It is not easy to accept that at 54 I am on oxygen and it is yet another hurdle and sign of deterioration of the disease. I wish you luck. Best wishes.