Any helpful tips, please.........

[Arncliffe]

New to this site - Recently diagnosed with ILD, Oxygen Assessment in few days struggling to cope with life changes,& SOB, practical tips on coping from fellow sufferers might help? Any advice gratefully received........!

[Katinka46]

Welcome to this forum. There are people here with ILDs and they will be only too happy to help. I Seoul’s be interested to know what medication you have been put on. I do not have an ILD, but mine is a fibrotic ling disease for which there is not much treatment so I am always keen to her about others.

All the best

K

[Stumpy55]

Hello Arncliffe, a warm welcome to our forum. It is understandable that you are struggling at the moment because all of these problems are new to you and we have all been there, so you are at the right place for support. Firstly you need to follow the instructions from your G.P and hospital Consultant and get all your medication sorted out. I know it's easier said than done but when you are finding it hard to breath, practice breathing slowly in through your nose and then with persed lips blow out through your mouth, like blowing out a candle. If you can get use to doing that even when your not having trouble, it will help you a lot. ✋️😊xx

[Linnie13]

I was diognosed in March with ILD hypersensitivity pnuemotitious im on 7.5 prendoselone a day a steroid also 250 mmf 2 of a morning 2 of a night that's a immune suppressant drug to stop my own cells attacking the lung , I've been prescribed oxygen to use when mobile , find it hard to carry as I'm only small ,so I'm saving to buy a portable concentrator as they are lighter to carry and run off rechargeable batteries , so won't run out as easily as the canister , good luck

[mrsmummy in reply to Linnie13]

Most oxygen companies do a smaller, lighter cylinder for those who struggle with the standard sized one. Do ask your respiratory nurse to check for you.

[Linnie13 in reply to mrsmummy]

Thanks Mrs mummy, I have used the smaller one ,but oxygen doesn't last long 😊

[AngieB72 in reply to Linnie13]

My Oxygen company provide me with a small portable oxygen concentrator. Just talk to your respiratory consultant or nurse to help get one.

[Linnie13 in reply to AngieB72]

Thank you angle I will 😊

[Titchykath in reply to Linnie13]

I am on the same meds as you including oxygen when mobile . I have been diagnosed as anthysynthtase syndrome (ASS) . My amount sustem is attacking my lungs so this treatment should hopefully keep it under control. I was originally diagnosed with hypersensitivity. Pnuemonitus, but the treatment was helping. Ask for blood tests to see if you have a auto immune system disease.

[Linnie13 in reply to Titchykath]

Thanks will do

[Titchykath in reply to Linnie13]

Just re read my previous reply, it should read auto immune system also the treatment for hp was not working, so this why I had a new consultant. And then had correct diagnosis after the blood results came through. predictive text or maybe brain fog 😂😂

[mrsmummy]

Welcome to the forum Arncliffe .

[Caspiana]

Welcome Arncliffe . 😃

It is all pretty overwhelming isn't it? We've all been there, and very often we still get overwhelmed. Take everything a day at a time, sometimes an hour at a time. Be kind to yourself and just take things easy. Adjustment takes time. Do come here often, it's so good to get support and lend it to others.

Sending warm wishes,

Cas xx 🌞🌷

[karenjenna1146]

Hi Arncliffe, welcome to the forum.

As everyone says it is overwhelming when first told. Plus yes we still do get overwhelmed when we are told of new changes, I certainly do and yet I am a very positive person. You need to allow yourself to have these feelings, but I have a good cry and then say all of this is not going to beat me, it is not going to stop me enjoying my life it just means a little more readjustment to take into consideration the new changes. Might take me a couple of days or so to dust myself off but then I bounce back and say it could be worse, because unfortunately there are people out there far worse off than me, bless them. I have just been put on 24 hours a day oxygen, I was only on overnight and ambulatory oxygen. I knew that I needed to be on it all the time as I was getting too tired to do all I wanted to do, and getting too breathless. Now I am on it 24 hours I have more energy again. Plus I know that being on the oxygen is helping to keep my other organs safer as on my own my body cannot supply them with the oxygen they also need. You take care Arncliffe, hope you manage to come to terms with it quickly, and live life - we only get one shot at it. All the very best Karen x

[Linnie13 in reply to karenjenna1146]

Lovely you are so positive , I try to be, but some days I get so frustrated having to use oxygen ,then I say well there are people worse off , glad your feeling better x

[lKeith]

Arncliffe

Hi I've got another oxygen test in approx 2No weeks time having been turned away twice due to a swollen ankle to add to the SOB they refused to assess me. The assessment is something you should not worry about, they will assess whether you need 15 hours or ambulatory (which apparently required only when you are using energy). The art is to pace yourself get used to doing everyday things at a very much slower pace, also climbing stairs & gradients, go at them slowly. Don't demand too much of yourself and expect that some things you used to do, you can't anymore. Accepting your situation will help dispel the frustration. Most on this forum have had to come to terms with it .

Good luck with your assessment.

IKeith