I was diagnosed with COPD over 10 years ago and managed reasonably well until the last 6 months. I had a chest infection and took the usual antibiotics and prednisolone, but still didn't get better, stats very low, 70. I was given even MORE antibiotics but to no avail. I finally got an appointment with the Respiratory Nurse at the hospital. She has prescribed Oxygen 16 hours a day!!!! I was/am devastated as you can imagine, but I thought well at least I will be less breathless..................... no chance, after 4 days I am exactly the same as usual.
Really, I am asking is this normal? and will I just have to try and live with this awful breathlessness, it is truly horrible every little thing is an awful effort.
I am feeling very depressed and annoyed that in all this time I have never seen a Consultant, is this normal? and do you think I could ask for something else?
I apologize for this miserable post but I am feeling very down.
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Woofly
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After having COPD for some time, I was put on constant oxygen. Eight years later I am on 6 liters per minute. During the first year I was on oxygen, I would wake up every morning and think, "I feel better." That feeling went on for a whole year. I think my organs had been so deprived that they needed a lot of building up.
Like you, as well, I got very depressed about having to be on oxygen. For that depression I took an SSRI called citalopram for about five years while I got my bearings and got adjusted to constantly being at the end of an oxygen tube. (My gardener says I look like a dog on a leash!) But I thank the gods every day that they have invented portable oxygen condensers (POC) so I can go out when I want.
It is uncomfortable and depressing to have COPD, but modern medicine has made so I can go about my four-storey terrace house (fifty-foot lead), cooking, sewing, writing, and also go out to the movies, dinner, theatre. I a 86 years old right now. You will be surprised at how much better the oxygen makes you feel. My advice is to keep it on all the time.
You may be "feeling the same" right now because you are anxious. I do counsel you to take the oxygen and believe it will make you feel better--because it will.
I should add that those Respiratory Nurses know a lot more about how things work than the consultants. I love my Respiratory Nurse at University College Hospital in London.
Sorry you are feeling so breathless. Do you think the infection has gone? If you feel like the infection is still there maybe it would be a good idea to see your GP. Hope you start feeling better soon. x
I am sorry to read about your dilemma. I'm afraid oxygen did not ease the shortness of breath an awful lot for me, but it did save my other organs from being starved of oxygen and it also gave me comfort when I was really struggling. Sats in the seventies is dangerous and way too low, so definitely being on oxygen will help you feel less fatigued all the time. Oxygen starvation is extremely tiring. It will take time for you to get used to being on oxygen and in the long run you will reap the benefits. Which lung disease specifically do you have if you don't mind me asking.
Eat well, exercise as much as you can - you can reverse some of the effects of COPD- as I’ve found out over the years. Even trying different inhalers. Take care and do as much as you can x
Hi Woofly. like yourself i had managed my COPD relatively well for 15 years from diagnosis. Then in jan 19 after a prolonged exacerbation in went to A&E sats in 70s i had a CT scan which diagnosed a Pulmonary Embolism.
I have been left extremely breathless, and in nov 19, like you, I was prescribed oxy 16/24. My hopes of it being some miracle that would solve the breathlessness and i could return to my version of normal were dashed. The only difference it has made is now my major organs are not dangerously starved of oxygen( a good thing by the way) but nothing regarding the breathing changed at all.
I really feel your sadness, i hate it and am still coming to terms with it. Have you been offered antidepressants, i chose not to take GP offer of them, but they might help you in the short term
In nov 19 resp consultant referred me to a cardiothoracic surgeon.
I am now about to undergo lung volume reduction surgery 50/50 chance it will improve things, but anything is worth a try.
You really need to see a respiratory consultant, ask your GP to refer you or ask the resp nurse at the hospital to refer you
Thank you Debbie ever so much for you reply. What you have decribed is exactly the same for me. I am wondering if my age is against me for further investigation! I am 78and until recently had a relatively good lifestyle, that has come to an abrupt stop.
I haven't see anyone other than the respiritory nurse, so am feeling somewhat abandoned. I will ask her when I get to see her (again!) about the lung volume reduction surgery, I am ready to try anything.
I've been on varying levels of prednisolone since December 2017 and oxygen since August 2019 - not for COPD but for NSIP. They both certainly help but yes it's depressing and restricting. I was told that the 15/16 hours a day is because, if the heart is deprived of enough oxygen, it may fail, but it can handle 8/9 hours a day with less oxygen than it would like. I know my NSIP is not going to get better, so I've just got to live with it and make the best of it. Good luck.
Hi, I'm sorry to hear you're feeling depressed but I do understand. I've had COPD for about 12 years now and like you thought I was managing pretty well. November 2018 I had a sudden attack of shortness of breath the like of which I've never had before and pray to God I never have again. I ended up in hospital for 2 weeks and was told that I'm now a carbon dioxide retainer. Now I'm on oxygen 24/7 and have to wear a medic alert because although I'm now always struggling for breath I can only have half a litre ,so very low dose. Apparently if I have a higher dose it will make me even worse. I'm just grateful for the little I can have and thank God I'm still alive.
sorry to read you are not that good at present. I am on oxygen 2lt more or less 24 hrs Find it damned annoying as it curtails my activities quite a lot. Tend to disconnect when visitors come for a short time- letting them do all the talking. saves breathes!
When out take two, has been three small cylinders with me and turn up the supply to around 4 ltrs. so soon empty them. Have to pick and choose what I do carefully.
found it rather exhausting sitting in a wheelchair attached to the cylinders I now sit in the car and have to admit tend to fall asleep whilst my friend does the shopping but it gets me out of the house. In doors have a thirty foot length of piping allowing me to do a little cooking, housework etc not an ideal life, but I am far better off than millions of others.
About a year ago, the consultant put me on Prednisolone, I thought it made me more breathless, but was told it happens sometimes when you first go on it. But when I had more, felt worse. Far more breathless. I did mention it to the Consultant (different one) and was told it should help me breathe more easily. I have to say, I did not find it helpful. My breathing was more laboured. I have refused to take any further Prednisolone . They obviously work for some, but not me.
Hope you get sorted out before too long Woofly. It can be distressing but it can be sorted, You will find a way to cope with your needs and make the necessary adjustments I am sure. Do not give up on the 02. It does make you feel better. cheers. spooks36
Hi, it will be a bit of a shock but it is a progressive disease and it's caught you up. There are treatments out there for it so don't beat yourself up quite so much, research them and they may make it better going forward.
I've recently been prescribed oxygen but not long periods (16hrs) minsTry to use it as ambulatory oxygen, Take it along with you when you have ANY kind of exertion, then take about 5mins in a rest position to recover. You may find this more useful and effective , works for me.
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