Newbie on ambulatory oxygen

[Barnesy77]

I just wanted to say hi.

I have pulmonary fibrosis caused by rheumatoid arthritis. I was diagnosed about 7 years ago and for a long time my lung function tests were fairly stable. Recently they have declined and my TlCO is now 34% of predicted. I am under the care of the Brompton and at a visit last week they said I should have oxygen for exercise at a rate of 4 lpm.

I used it today for the first time. What a difference! I had reached the point where even walking on the flat was a trial, and I was getting slower and slower. Today I was able to walk quickly, talk and walk at the same time and walk up the hill up the road without stopping and gasping for breath all the way.

Hopefully this will help me get fitter.

Also I'm about to start a new treatment. After many years on Mycophenelate I am going on to either Cyclophosamide or Rituxamab (I don't know which as it is a clinical trial being run by the Brompton)

I've been browsing these communities and the information has been valuable. If I can help anyone with tales from my experience please do ask.

Regards

Andrew

[mrsmummy]

Hello Andrew and welcome to the BLF forum. I am pleased to hear the oxygen made such a positive difference for you.

[Barnesy77 in reply to mrsmummy]

Thank you Mrs mummy. I still have to overcome the embarrassment but at least I know it has that positive effect.

[skischool]

Andrew,Show no embarrassment in using o2.it is a sign of your positive attitude in overcoming a debilitating condition and trying to live life as normally as possible .Carry it with pride,keep on exercising and continue to enjoy life to the full.best wishes..........skis and scruffy cat

[Hidden]

Hi Andrew

Welcome to the forum. I am glad you are attending the Brompton and have the chance of a clinical trial.

Take good care.

[southcats]

welcome to the club! great to hear the oxygen made an instant and significant difference - i had a similar experience (haven't been able to climb the stairs up to our flat on 3rd floor without stopping to catch my breath in some 2 years but now i can) - carrying the cylinder around will take some getting used to but that's all there is to it, ie you getting used to it, there's really no reason to feel 'embarrassed' about anything

[Barnesy77 in reply to southcats]

Hi Southcats, thanks for the encouraging words.

I know that I shouldn't be embarrassed but it's human nature. I went for a 2 mile walk today including some short hills and I didn't have to stop. I met some neighbours so I had to face people for the first time. It wasn't too bad and it's a small price to pay to be able to get out. I'm glad to hear you can now get up to the 3rd floor without problems.