COPD

[darlene46]

My name is Darlene, I have been living with COPD for 10 years now and I am on oxygen therapy and even with the oxygen on it does not seem to help me when I am moving and my 02 SATs remains in the mid 90" s. I also have diabetes GERD congestive heart failure asthma and osteoarthritis when I am sitting I do not need oxygen but when I begin to move or walk around buy oxygen or rather I become very short of breath and don't understand why the oxygen is not helping at that point can anyone tell me?

[Time_2_drink]

Hi Darlene your sats seem fine. I would say when I mobilise mine low 80s even sitting they seldom rise above this and are often lower but if you are worried perhaps ring BLF best wishes

[cosykitty]

Hello Darlene, I'm assuming from what you have written Oxygen Therapy hasn't been fully explained to you. Supplemental oxygen is given to help maintain good organ function and to give your body the oxygen it needs to work at it's best. I'm afraid it's not for breathlessness. You will still feel breathless upon exertion, but the extra oxygen will hopefully help you maintain a safe level. Getting some exercise is very important, although I know it's not easy when you're struggling to breathe.

You say your SATs are in the mid 90's which sounds a little bit high. 88%-92% is considered optimal for those with COPD, so perhaps you need to flag that up with your respiratory team just to make sure you're on the right flow of oxygen.

[JoHarr in reply to cosykitty]

cosykitty Hi kitty, maybe I have got it wrong but surely SATs in mid 90s can only be considered good not a bit high. My own levels are around 97-98 at rest which I would have considered normal for most people. I do not use oxygen yet but can see I may need ambualatory oxygen soon as my levels go down considerably on exertion. I have extreme copd, (is extreme the right word? sure you know what I mean, FEV1 23% 7 years ago) Best wishes, JoHarr

[cosykitty in reply to JoHarr]

Hi JoHarr, as Darlene is on LTOT (long term oxygen therapy) it's important to remember that a higher than optimal (88-92%) Saturation could indicate some CO2 retention. Bear in mind that depending on the flow of extra oxygen, not everyone is able to ventilate the CO2 and the build up can result in toxicity (Hypercapnia and Respiratory Acidosis).

There is a fine balance to be met when on oxygen therapy, one that is sometimes very difficult to achieve. I couldn't understand why respiratory doctors were reluctant to start my mother on LTOT. I just knew her saturation was dangerously low. But we were never properly informed (but that's another story) about the consequences of Oxygen usage in some COPD patients. Those often referred to as 'retainers'.

I soon realised the consequences when my mother was eventually given supplemental oxygen and she went on to develop CO2 retention. She was unable to tolerate NIV so this left us with very little options when it came to treatment.

97-98% is considered normal for those without lung disease, but in those with poor lung function it may indicate a poor gas exchange. I'm in no way an expert on these things, just a daughter who cared for a mother who sadly succumbed to COPD earlier this year.

I send you my very best

[JoHarr in reply to cosykitty]

cosykitty Hi kitty, thank you for your reply, most enlightening, I had heard about CO2 retention but not made the connection between that and normal SAT levels. I understand what you mean about not being properly informed by the health care professionals.

Very sorry to hear about your mum, I'm sure you were a great daughter. Best wishes, JoHarr

[Roessner541]

I was having that problem as well. I would not recommend this for you but I started walking everyday without my oxygen and with my Walker I don't go far and when my sap start to drop I sit down and recover and then get up again and walk a little bit further and then stop and rest and then I walk a little bit further and stop and rest and then I do the return trip c180 home it seems to work for me I no longer sleep with oxygen but I'm still trying to gain strength on just walking around the house so now what I am doing is walking without the oxygen and not sitting to standing deal until I recover unless I'm really out of breath can I get used to moving and just standing without the oxygen I have been doing this for about 3 weeks now I still get short of breath when I do things but it doesn't seem to be nearly as bad as I think my lungs are getting stronger from doing the walking without maybe it's my imagination I don't know

[Toci in reply to Roessner541]

I wouldn't recommend it for anyone either. Oxygen is only prescribed when it is needed and whilst you may be able to come off it by upping your exercise tolerance this should be done whilst wearing it as not to would be dangerous and cause damage to the heart and other internal organs. Stay safe.x

[marybf]

Darlene, I'm so sorry to hear of your plight. My late husband was also on oxygen therapy. He suffered from chronic heart failure/asthma/emphysema/bronchitis plus a diaphragm which was attached to his already compromised lung, due to the nerve holding the diaphragm in place being snipped during triple bypass surgery. He had great hopes for the oxygen therapy to relieve the breathlessness he experienced practically full-time. We were informed that the oxygen only addressed a deficit in his blood oxygen, not the distressing breathlessness which blighted his days & nights.

I do feel that patients should be advised of this when being considered for oxygen therapy. All we were able to do was conserve his energy as much as possible. I'm sorry not to be able to offer any more positive response, but do remember each & every person is different, and I hope the positive vibes I'm sending will make you feel less isolated in your struggle. Bridie xx