I need oxygen?

[simba1111]

I have recently been diagnosed with emphysema but had It a while. Dr wont agree that I need oxygen therapy but I know I do and would benefit from it. Are there any charities that will help me?

[stone-UK]

Hi

The reason for supplementary oxygen is to maintain your oxygen levels at a acceptable level to protect major organs.

If your levels are below 88% at rest then you may need long term oxygen theraphy.

The test is ABG arterial blood gasses test, requires a sample of blood from your wrist.

If your levels drop below 88% when walking or doing exercise then you may need Oxygen therapy.

The test is a six minute walk test.

Very few Doctors prescribe oxygen, it is usually prescribed by your respiratory team.

Will your GP refer you to the respiratory team at your local hospital.

It is unwise to seek oxygen theraphy outside of the NHS.

Oxygen can also be harmful if prescribed for the wrong reasons and without proper testing.

[becraftygirl]

ask to be sent to consultant or respetry nurse but ozengen can be dpo more harm than good if not used properly hun so be aware

[Billiejean_2]

Do you have your oxy levels measured regularly ? You can get your doctor/nurse to do this or buy yourself a Pulse Oximetre that will let you check the levels yourself at home.

As Stone told you already, your levels should not be lower then 88 and if it is, chances are you do need oxy. One thing that often happens is that a doctor or even consultant, can see you while your breathing is quite stable because you've been sitting in the waiting room for 20 minutes. If this happens, ask them to walk to the e d of the corridoor with you or observe you climbing a flight of stairs.

[Hidden]

Hi I agree with the others. Oxygen won't directly help you to breathe and it is just to support your other organs if you regularly go below 88% oxygen levels. If wrongly used it can do more harm than good. x

[jojam]

You need to ask to be referred to Respiratory Team who can assess you properly.

oxygen assessments are normally carried out at the lung function clinic or dedicated COPD oxygen team. You will normally have you blood gases checked to ensure you have the correct level prescribed as too much oxygen can be dangerous particularly in emphysema as you could be retaining CO2.

Please ask for proper referral by your GP

Best wishes

Jo

[simba1111 in reply to jojam]

Level was at 81 % for 3 days. Had ct scan confirmed that I have emphysema and maybe something else..... Havnt checked blood oxygen so will do that next. I don't know why they didn't do it during my app just took lots of blood. I'm paranoid that consultant avoiding suggesting oxygen due to cost implications. I'm weak , breathless, constantly sleepy and getting clogged up with mucus and feel oxygen therapy will boost my energy levels. Are there any charity's that can help me in UK? My go nurse is crap and failed to notice lots of things few years back. Gp is just as bad and local hospital chest clinic didn't diagnose me properly either. Where can I go for proper advice and support? I'm fairly anxious right now which isn't helping.

[simba1111 in reply to simba1111]

I was diagnosed by accident at a different hospital following allergy testing

[RibvanRey in reply to simba1111]

The NHS is not cutting back on oxygen to save money because the damage caused by not prescribing it would cost a 1000× more money in surgery, hospital stays, nursing care and a great deal of medication to keep the person alive. It is very much cheaper to prescribe Oxygen.

Regards Rib

[jojam in reply to simba1111]

Consultant would not withhold oxygen due to cost. Oxygen is not a magic remedy it can do more harm than good if prescribed without due care. Your consultant appears to by showing due care by arranging CT scan & blood tests to try and assess your condition correctly. Please do as others have suggested & contact the BLF help line 03000 030 555

Best wishes

Jo

[Hidden in reply to simba1111]

Which levels were at 81% for three days.

[simba1111]

Consultant acted swiftly and ordered a ct scan...

[stone-UK in reply to simba1111]

Hi

Ring the BLF line and speak to one of the nurse, they will offer advice and guidance.

03000 030 555

[Pantani]

It can't help if your bunged up with mucus. You need to get some mucodyne, this helps make the mucus less sticky and makes it easier to clear. You need to talk to the respiratory nurse or the physios about techniques for clearing your chest. Also breathing exercises. Have been referred to a pulmonary rehab course. This lasts 6 weeks and combines education about COPD as well as incorporating exercise aimed at improving your breathing.

[kimmy59]

Evening. Everyone is right you need to be referred to a consultant, who in turn will put you in the care of community respiratory nurses their job is to keep you out of hospital to save NHS money. I don't know if its the same in every area, but in mine its the nurses who prescribe the oxygen and assess me twice a year.

You don't say what medication your taking, maybe you need it changed or the dosage altered.

Good luck

Kim xx

[FarmerD]

Hello Simba,are you in the UK?It is unlikely a doctor would deny you oxygen if you need it.Do you have a pulmonary consultant?A GP would not be qualified to authorise oxygen but should refer you on.Being breathless does not mean you would benefit from supplement oxygen it could in fact be harmful.If you explain your worries to your doctor they should tell you the best treatment.It is not wise to obtain oxygen from anywhere but a qualified doctor,It could kill you!Let us know how you get on.I have very severe emphysema fev1 of 23% I would not benefit from oxygen supplement at this time.D.

[PollyP]

I fully support what everyone else has said about the need for oxygen and the appropriate health services needed to assess your individual need for oxygen.

Has anyone has mentioned pulmonary rehabilitation to you? This can help your muscles use oxygen more efficiently and will help educate you about this syndrome and help with relaxation too.

Oh and yes do use the BLF helpline as well.

I will you well.

P.

[Tatters]

I think the replies you have got cover it well but I would just like to add my experience. I felt I need oxygen urgently and thought of buying a concentrator myself as the doctors were reluctant to put me on it. I then looked into Oxygen Therapy and realised that it's not straight forward as having too much was almost as bad as having too little a case of a little knowledge is a dangerous thing!! As people have said it's the blood taken from your wrist that is the decider if you need it. They can't take blood if you have been on steroids during the 3 previous weeks and this made my tests complicated, the outcome was that I was admitted to hospital (one of the five admissions this year) it was the respiratory team in hospital that put me on it, I am now on it 24/7. Hope my comments are helpful. Tatters.

[Hidden]

Here is a good site on oxygen with questions and then answers by a team of experts. Kind of explains why you feel you need oxygen but why it won't help breathlessness in many cases:

breathingbetterlivingwell.c...

[TwinklingStar in reply to Hidden]

I found this extremely informative. Thank you for the link, Winded - very helpful indeed.

Hugs to everyone.

Keep Smiling or in my case Keep Twinkling.

Love from

Twinkling Star

[Hidden in reply to TwinklingStar]

You are welcome!

Yes, it is a very informative site because it answered about all my questions! I even saved it to my "desktop" so I can quickly refer to it because I DO forget a lot of things.....

It is good information for any one who has ever had to use oxygen for any length of time!

[TwinklingStar in reply to Hidden]

Especially good for answering questions from friends or family asking things like "Why are you still breathless when you're on oxygen?" lol

[Hidden in reply to TwinklingStar]

Yeah, well I didn't know why, myself! But the site explained it so I could understand.......

At LEAST you have others asking you!

If I am coughing to help clear my passages, I think my family thinks I put on a (fake) show just for them! They have said things like, "You gonna live?"

(This pc is freezin up on me here so better go and clean it!)

[TwinklingStar]

Hello Winded, Actually I don't have any family who show much interest at all in my conditions despite the fact that I have 3 life threatening conditions. I just didn't know how to make the post sound positive without putting what I wrote

Like you most of them have treated me for almost the whole of my life as a complete hypochondriac. It took me over 40 years to be diagnosed for my genetic condition. The worst thing now is all those in my family who treated me so badly are gradually finding out that they have the same genetic condition or that their children or grandchildren have it. Of course, some are still in denial and are just as bad as they have always been. I feel sorry for them really, especially those who are putting their own children and grandchildren at risk by remaining in denial. They will truly suffer in the future. There is nothing worse than fighting a condition. You have to accept it, deal with it and take it by the hand and look after it until it decides to move on or takes you with it.

I am so sorry your family are not supportive at all. It makes us feel so alone and lost. You would think the least they could do would be to try to understand our condition and treat us they way they would like to be treated. Unfortunately, it is very sad that even our own families are unable to do this. I hope you have some friends who are more supportive. Unfortunately, family are the worst to try and change them. Maybe you could join some sort of group or go on one of those courses for people with lung disorders. I have heard many people make a lot of good friends and support each other by going to those classes.

Well.....hugs and love to you. Keep strong.

Lots of love from

Twinkling Star

[starveycat]

Hi Twinkling Star just read your post and your comment that we just have to accept our condition deal with it take it by the hand and look after it absolutely brilliant . puts in perspective thank-you ♥♥♥