Helpplease

[Sunfloweronline]

I’m hoping that you can please help me. I’m on oxygen for IPF, managing ok during these difficult times. I suppose I’ve just been accepting that I get tired 💤 and lethargic, but I have been using the oxygen now sometimes when I’m sat down- recommended to use on exertion last time I saw doc in April! Can anyone please let me know if I am not gonna compromise the progression of IPF

Thanks so very much 💕💕

[skischool]

If you are prescribed oxygen purely for exertion and ambulation but now find that it gives you some comfort when just sitting down it suggests that you may need an oxygen review with your respiratory nurse/team.in the short term it will probably do you no harm and certainly not compromise your IPF or it's progression,if anything it will help but you need to speak to the nurse and establish that you do not retain Co2 if you are upping your oxygen rate or duration.

You may find like me that you have reached the stage where LTOT(long term oxygen therapy)will be beneficial in treating your condition and general health but only they can be the judge of that.

Best wishes Ski's and Scruff's

[Sunfloweronline in reply to skischool]

Thanks so much for your reply, I am agreeing but appreciate your stating that will not adversely make a problem! I’m hoping that you are doing ok in the Covid19 days 🌻all the very best

[Hidden]

I would be trying to do some exercise each day, to keep your breathing muscles in good working order, if you sit too much you will decondition and using the oxygen for that because you have deconditioned may not be a good idea. Chat with your respiratory team concerning this situation, and perhaps give the BLF helpline a call for further advice.

blf.org.uk/

The more deconditioned you are the more tired you will feel. Try to do some exercise whatever you can manage regularly daily even when feeling tired. Keep an eye on your blood oxygen levels.

[Sunfloweronline in reply to Hidden]

I’m so grateful for your advice Bkin, I do try to do my exercise but being on my own the Motivation is poorly lacking!

But I take on board🤘 what you say about decondition! I used to love walking 🚶‍♀️ and I have ordered a pedometer so I’m gonna get those steps counted

😊

[Hidden in reply to Sunfloweronline]

I only do short walks, and only when the weather is lung friendly, I do most of my exercise inside, videos on you tube lots to choose from. BLF has a video on their site too...

blf.org.uk/support-for-you/...

Qigong exercises are very good to start if you have deconditioned, BLF's videos have 3 different levels for varying fitness levels.

[Sunfloweronline in reply to Hidden]

Thanks again 😊

[skischool in reply to Sunfloweronline]

Years ago i invested in qute an expensive treadmill but for walking,especially since the lockdown and now with winter and the weather becoming more severe it is keeping me alive i believe,i set myself a target of a minimum of 500mtrs a day which is roughly the equivalent of two x 6 min walk tests for me and it is the best purchase i ever made even if that is with the assistance of my supplementary O2.

[Croydonia in reply to skischool]

I have a treadmill as well, and I use it every day for half an hour at quite a steady pace. I find that walking outside difficult if it’s windy, cold or rainy, so it’s much more enjoyable watching the tv and plodding along. I’ve been told to monitor my sats, but they go to about 88 on exercise, so I’m fully expecting to go on ambulatory oxygen in the near future!

[Izb1 in reply to skischool]

Thats good news Mike and glad to hear you are managing to exercise every day considering the problems you have. Silly question but how do you manage this being on oxygen? What do you do with your oxygen tank? If you take it off how do you manage to breath properly. Shows how much I know about oxygen x

[skischool in reply to Izb1]

Irene,not a daft question as exercise whilst using oxygen can be bit of a challenge. Fortunately I have a home concentrator whose prime usage is for my LTOT and use that being careful to prevent the tubing being caught up in the moving parts of the treadmill otherwise my death might be recorded as suicide lol😭😹xx

[Izb1 in reply to skischool]

Well thats a good solution Mike, just mind that tubing ha! It all looks expensive though, good job you have the equipment to make life easier now when you need it most x

[Debs_ALUK Partner British Lung Foundation]

Hi Sunfloweronline

If you are have been unable to find an answer to your question and still need advice, as Bkin has mentioned you can call our Helpline on 03000 030 555. We can arrange for one our friendly nurses to contact you for a chat when they are next available. Take care

Debs