Concerns about breathing: It's been a... - British Lung Foun...

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Concerns about breathing


It's been a while since I posted on here. I have emphysema, stage 4. For the past 2 years I have been on oxygen at home. 3 litres a minute, 16 hours a day. I also have a portable oxygen unit which I take with me if I am exerting myself. Well, just lately I am finding that as soon as I stand up and walk just a very short distance, I am struggling to breathe, my oxygen levels in the blood drops extremely (around 40 sometimes) and I know I should go to A&E to get this checked out, but I wonder if there is actually anything they can do for me. When I am sitting relaxed, the oxygen levels go as high as 95. And because I also have PBC which is an autoimmune liver disease, looks like any kind of surgery will be out of the question. I will be 61 just before Christmas, and in myself I feel absolutely fine. I have started using my mobility scooter to help me to get out and about easier, but I wonder if there is likely to be light at the end of the tunnel for me?

20 Replies

I’m no expert but sats at 40 is not good. I’d get checked out. Ask Dr. questions!

madmags in reply to Hidden

Ok, thanks for responding

Emphysema affects oxygen diffusion. if your diffusion rate is slow, oxygen replenishing in the blood will be slow. thus a sharp drop in blood o2 stat even with little work. try the DLCO test to find out oxygen diffusion rate.

madmags in reply to Maverick2

Hi Maverick2, What exactly is the DLCO test?

Maverick2 in reply to madmags

DLCO is a test to determine how efficient your lung alveoli exchange oxygen with the blood.

The blood oxygen drops when oxygen is utilized in a large amount like exercise. the blood oxygen will be replenished by diffusion from alveoli. Thus oxygen level of blood will be restored immediately after stopping the activity. these acts occur so fast that you won't notice oxygen level drop when the diffusion rate is high.

Emphysema causes alveoli destruction which reduces alveoli blood exchange thus the diffusion rate of oxygen. if the diffusion is slow even minor activity lead to a drop of oxygen which will become noticeable.

Having more and more oxygen won't solve the problem.

If you are expecting a solution, I don't have one. You have to consult a Pulmonologist

Hello madmags . 👋😁

The fact that you are out and about on your mobility scooter tells me you still have much zest for life so no I doubt very much that is is the end of the tunnel for you. I would suggest you talk with your respiratory consultant as it may be time for an oxygen review to see if you'd oxygen levels need adjusting. When your O2 drops, how long does it take to come back up? You definitely need to make an appointment as dropping so low is dangerous. You could lose consciousness and hurt yourself. Have you been to pulmonary rehabilitation? I think it would help.

Don't lose heart. There are things that can be done to help you. Sending a gentle hug.

Cas xx 🌼☕🍁

madmags in reply to Caspiana

Thank you, Caspiana, I done pulmonary rehab about 18 months ago, and I am now half way through my second lot. Quite often I have to settle for exercises I can do sitting down, and I do get very frustrated with that! When my 02 drops, my recovery is usually quite quick. I have an appointment coming up soon for the chest clinic so I will have a talk with my consultant. Thank you for your very kind words.

syntax in reply to madmags

You to could be helped by checking out Health Sciences Institutes online.

Speak to your GP I ahd the same trouble and I am now using my oxygen 24/7 has made a lot of difference

madmags in reply to gingermusic

Thank you. I will be seeing the consultant soon, I will mention it to him


Hello madmags, I was just wondering what oxygen level do you use when mobile/exercising?

If they haven't already assessed you for this, it would be good for the oxygen nurses to do it, or as you are doing PR ask them to do it while you're exercising. I need 2or3 litre if I'm just sitting about, but was assessed as needing up to 8lt, constant flow, for moving about, currently I use 5lt max mostly.

You can still use nasel specs at these levels your oxygen company can send you some that go up to 8ltr.

Mandy xxxc

madmags in reply to Hidden

Hi Mandy,

I am on 4 litres when walking or exercising. Recently when I went to PR my oxygen levels were checked and even though I was using my oxygen at the time, my levels were extremely low, and I was sent home and told to rest. Well, I have just had a fabulous 2 week holiday in Scotland, and we stayed in a caravan, the site is right close to the beach. I felt terrific in myself, and was using my mobility scooter a lot. Back to rehab tomorrow morning, hopefully this time I will get to join in

Hidden in reply to madmags

My levels also have a habit of dropping very low, as soon as I stand up.

You Could ask your oxygen nurse to reassess the amount you need when excercing, if you're worried?

You may find this week that you are much better. Sometimes it's better not to look at the figures, but go by how you feel.

I hope things are better for you this week.

Hi! Good luck with your up-coming Consultant 's appointment and please do come back and tell how you got on etc.

Best of luck!💞

Hi Mags, Just a thought: My Oxygen Nurses came to see me pre arranged by them, to do my Oxygen Assessment and Blood Gases (Ear). They calculated that I was not receiving the correct amount of Oxygen as There was a high Carbon Dioxide mix, causing the increased Breathlessness whilst on my Oxygen. They adjusted my Oxygen Level, Lowered it from 3 to 2, they came back to me in 4 weeks, did the whole process again, I was OK and have been fine since. (apart from chesty cough) right now. The mix of the Oxygen being to high created Carbon Dioxide. Worth you phoning Respiratory ? Best of luck Hun. XXX C.

madmags in reply to Hacienda

Hi Hacienda, thanks for your message. I will be speaking to the consultant on my next visit to the chest clinic, and see what can be done xx

Hi madmags: You are on oxygen 16 hrs a day , how do you do get by when you are not on 3 litres for the other 8 hrs. I myself have been stage 4 , for 5 yrs now and on 2 litres 24 hrs a day.

madmags in reply to maureenjjj

Hi maureenjjj

Until recently I was managing ok for the 8 hours, I just had to make sure I took things steady and not go rushing about. Now, well I am short of breath more than before.

For asthma only Fev1, matters. for COPD bronchitis both Fev1, FVC matters. for emphysema FVC and Dlco maters.

Dlco Normal is 80-100%. for asthma it will be normal, for bronchitis it will be a little less dependent on emphysema component 60-80%. for emphysema, it will be <60%.

Really nobody knows how emphysema comes and how to increase Dlco.

Even children's have it and Lung transplant patients get it.

That's why I'm skeptical about stem cell funding in your last post.

I cannot give you a suggestion to increase Dlco because there is no science.


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