OXYGEN

[Joneswm]

Hi everyone.

Well, I’ve been for my oxygen assessment today and I need to start ambulatory oxygen therapy for my PR. This will be delivered tomorrow, weather permitting. Not surprised as over the last few months my breathlessness has deteriorated. Recently had one month course of steroids, I felt amazing, cleaning at 5.00am. Currently im not on any medication for my illness, which will have been diagnosed three years in October. I do have emergency antibiotics at home, and take carbocisteine to break mucous. It would be good to hear from others with this debilitating diagnosis. Wendy

[Ergendl]

Good morning Wendy. What lung condition do you have? Is there a reason why you don't use a nebuliser or inhalers?

[gingermusic]

Very surprised you are not on any inhalers at all what have you been diagnosed with? I am also on home oxygen and have been for many years, also for when out walking. Hope you find it helps you.

[maas in reply to gingermusic]

Hi gingermusic when you say you use oxygen for walking , does it make a big difference to your breathing. I have been on oxygen for about 18 months. But i still get breathless.

[gingermusic in reply to maas]

Oh gosh I don't think I would be able to do anything without it. I certainly could not walk outside or do my shopping without the oxygen. Also use a mobility walker which is a great help to me. I got the walker as I found I could manage better when pushing a supermarket trolley plus with the walker I do not have to carry the oxygen as the bottle sits in the attached bag. Hope this helps you

[Caspiana in reply to maas]

Hello maas .

The oxygen keeps my blood oxygenated, it does not stop my breathlessness completely. It does keep me alert, reduces the strain on my heart and definitely with it I have more energy. I think many people think having oxygen can prevent breathlessness, I don't believe this is the case. If however, your oxygen levels dip even with your oxygen on, you need to consider being re evaluated by your doctor . The amount of oxygen may not be sufficient. xx 😊

[Joneswm]

Hi there. Sorry I meant PF ( Pulmonary Fibrosis) not PR. Inhalers and Nebulisers are no help , so I’m told, for this condition. My breathing is fine at rest, but once I start any form exertion I become quite breathless. Let’s hope things improve. Thanks for your replies.

[Caspiana in reply to Joneswm]

Same here. Sitting down , I am fine, but once I start exerting myself I become Puff the Magic Dragon. 🐉😢

[Caspiana]

Hello Joneswm .

I hope you get your delivery. I see the weather is dreadful. Take good care. xx 😀

[Joneswm]

Hi Caspiana. The driver has contacted me and he’s going to do his best ! Fingers crossed, as the snow keeps on falling.

[Caspiana in reply to Joneswm]

What a brave soul he/she is. Bless them. Have a lovely day Joneswm . Keep warm. xx ☕🍰

[kathbrad3]

I'm on ambulatory oxygen and it doesn't help my breathlessness at all but helps keep my oxygen levels up

[Maureenpearl]

Hi Wendy and welcome. I too have been diagnosed with Pulmonary Fibrosis which for me the lupus I'm diagnosed with has caused the lung damage.

I also use ambulatory oxygen 6 litres, I was given 4 litres in 2013 but I was still very breathless whenever I walked anywhere so I was assessed again and I was given the 6litres.

To have a shower, get dressed or even talk I have to use the oxygen.

Using the oxygen doesn't stop me from doing things such as going on holidays (I go on cruises from Southampton).

I too have emergency antibiotics to take and I had to take it just after Christmas for a chest infection which did not clear and had to have a chest X-Ray and more antibiotics.

Hoping you cope well with your oxygen. I have cylinders that I use to go out and I use the Liquid oxygen indoors.

All the best.

Praying for healing.

Remain blessed

Maureen

[maas in reply to Maureenpearl]

Hi Maureen pearl you sound like what I am like. I have to do everything slowly and stop every few minutes when I am doing anything I still have learnt to control my breathing to recover. I have watched the butekyo breathing videos but find it so hard not to breath through my mouth. Then I feel as though I am panicking I get really fed up it saps any energy I have. I too have been on cruises from Southampton only problem is the bay of Biscay its a few days to get down to the warmer weather. Up to last year I flew out of Manchester to warmer climates but I think them days are over. To me it would be too stressful to fly. Has anybody got any good tips how to cope with this horrible disease.

[Hidden in reply to maas]

I swear by a fan on my face when short of breath which is anytime I move about or talk .. I sit in my chair or lye in bed and its on my trusty fan ...never fails to get my breathing under control and calms me down too ... I have tried every breathing technique but the fan is a must for me xx😘

[Hidden]

Hi I have lam lung disease and am on oxygen. 24/7 but it definately causes a lot of people to think its for breathlessness which is not true as oxygen is for your blood it gives us the bit of oxygen back we lack when our levels dip low and without it I certainly would not be here but it does not do anything for my shortness of breath unfortunately except gives me more energy perhaps ... I wish it did help with my SOB 😰😥

[Hacienda]

Same here Kem. I have always said Oxygen & SOB do not go hand in hand. I wouldn't be able to Go to Exercise Classes, Shopping, Rehab without my Oxygen alas slowly. also breathing exercises and a salt pipe help a lot...I only have to walk to the loo and I'm sob, I have a Ventolin inhaler in every room and in the car. I'm also on the Active Transplant List. I know Exercise is the best thing for opening up the Lungs. This week not been able to go out , Snow. So I have exercised at home as best I can. Good Luck to everyone with their Breathing and SOB. xxx Carolina.