Just had my final oxgen accessment today. I've been told I need it 16 hours a day

[Michelle12120]

Can anyone recommend a light weight one to ask for when I go out of the house.

[Puffthemagicdragon]

I use a ZA size. It's the smallest. How many litres per minute are you on ?

[Puffthemagicdragon]

Here's a link to the BOC data on cylinders. I have found it very helpful. It's a PDF file and worth saving.

bochealthcare.co.uk/interne...

[O2Trees in reply to Puffthemagicdragon]

Thanks Puff - very useful. Hope things good your end

[Puffthemagicdragon in reply to O2Trees]

Things ok here. Feeling ok. Weather a bit humid though.

[Puffthemagicdragon]

I've just had a thought. The company that supplies my oxygen when I go to the south coast to visit relatives don't do the ZA size, only the next size up. So I suppose it depends on what oxygen company you use.

[Michelle12120]

They have put me on 4 liter per min

[Toci]

The oxygen company will supply whatever your respiratory team have ordered for you. Don't worry. x

[Michelle12120]

Thank you I've had to sit and tell my 10 year old son that his mum needs oxygen and I've been referred for a accessement for a lung transplant. It's been a really hard telling him. My mum and auntie haven't long died from empthysema. So he's taken the news hard.

[Hidden in reply to Michelle12120]

michelle 12120 once the shock of you telling your son and he gets the understanding of it,he will seem like a grown man in terms of the situation,kids adapt and he will to,wishing you all the best that I can,good luck,and to the little man,who will soon be a very wise boy,he will be there for you don't worry,he,s lost his nana and auntie to this,his mums not going anywere ,that's what he will be thinking ,and he will be there for you, my best wishes to you both,love twice xxx

[Suzy6]

Oh Sweetheart he will be just fine, wait and see. You will tackle this together and it will bring you even closer. There are some really knowledgeable and kind people here who will help you with any queries. Stay in touch and good luck.

[Michelle12120]

Thank you your words mean so much. I was told in jan from resp consultant I had dysfunctional breathing. I had lung function which wasn't normal then ct scan which showed empthysema in both lungs. I've now been referred to newcastle for lung translplant and home oxgen today. So it's come as a shock for the family. I'm only 39 things have to get better hopefully

[Hidden in reply to Michelle12120]

michelle ,things will get better , don't worry look after yourself and the little man will help you ,you,ll be calling him your big man soon,love twice xxx

[droo32 in reply to Michelle12120]

Hi Michelle,

You definitely seen rather young for sever emphysema. May I ask, have you been tested for Alpha-1?

[Puffthemagicdragon in reply to Michelle12120]

You should read Dall05's posts. He may give you some inspiration. He's on the transplant list and puts the rest of us to shame with his walkabouts !

[sandy126]

HI Michelle, sorry to hear that you have to be on oxygen, it can be a difficult time being diagnosed and scary!! I do hope you find something to use that is portable. My husband, John had an Airsep but it only goes up to 3 litres. .I see from your conversations that you are on 4. I wish you well. best regards Sandy

[Pagandog]

I found that my oxygen company were very reluctant to provide a portable as everyone wanted them and the NHS won't pay. So they put you on a list and it can take years to get one. Their words. My PH consultant wasn't amused and half an hour after talking to my specialist nurse the company phoned me to say they would be delivering next day. Just remember that it is your specialist team who decide what you need and not the suppliers

[flo1]

Sorry to hear that Michelle, it depends what ltr your using realling there are a few out there will put on a link the NHS ones are heavy for ladies I use mine provided by them on rare occasions as the weight is awful on me, they are liquid oxygen so continuous flow, which are better in lots of ways for us. as you feel you are getting more, however the weight is a problem so you have to work with something that suits you and is comfortable. I purchased a focus the smallest portable in the world this delivers on pulse which might not be enough for you? and also only goes to 2ltr flow, again it might not be enough, also there is a eclipse up to 3ltr slighty bigger than mine, these are pricey bits of equipment and I would recommend buying from new...

[flo1]

airsep.com/Products/Portabl... look on google many links to them again will depend what you need and what level you need ask your team before purchasing anything if you are unsure ...hope this helps you.

[Michelle12120]

I've had the alpha test apparently I carry the gene. But it doesn't effect me so the consultant said

[carolg1 in reply to Michelle12120]

Hi Michelle,

Dont worry I am sure your son will be ok, I think embarrassment when your out comes into play first then the protection comes in he will want to protect and care for you, I was in my mid forties when I was first diagnosed, but smoked quite heavy and working in the coal industry, its a real blow my son was around the same age, he is now 16yrs and he still protects and cares for me good luck xx

[droo32 in reply to Michelle12120]

You state that you carry the gene but that it doesn't have an affect in your case. I would argue that there is more than likely, obviously, some genetic predisposition given your previous statements that you have relatives who have also suffered from this disease and the state of your condition given your age. Perhaps, are you of the MZ phenotype for AAT deficiency? Doctors are traditionally taught that only the ZZ phenotype is at an increased risk for COPD although recent scientific data has been challenging that notion.

atsjournals.org/doi/abs/10....

[Michelle12120 in reply to droo32]

Thank you I will speak to my consultant about it when I see him. My mum and auntie have died from emphysema. I'm now on 15 hours of oxgen a day still feel like rubbish. I think I've got a flare up so I have just started my rescue meds.

[droo32 in reply to Michelle12120]

I can only imagine how miserable you feel. I wish there was more that could be done for COPD. Stay strong and have faith.

<<<HUGGS>>>