I have now been on oxygen for 10 days, 15 hours a day, I really thought it would help me, but no its as bad if not worse than ever. I telephone the respiratory nurse at the hospital (she should have visited me last week) I told her the state I was in, she rather abruptly I thought that oxygen doesn't help with breathlessness........ so my question is, is this as good as it gets, if so I can't take much more, I can barely make it to the bathroom now. Can anyone offer any advice at all? would paying to see a specialist be of any help? I have never seen a specialist since I was diagnosed over 16 years ago!
Sorry for my tale of woe,
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Woofly
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Oxygen it does not help breathless it only helps with other organs it is because your oxygen levels are low you are on oxygen as so one said try a little morphine which helps with your breathing that is what I use my oxygen is just to keep my levels up you will get used to oxygen just calm down a bit and you will find it will help and say to respirated muse about some morphine 2and half ml up to four times a day when you feel breathless and it will help
Just thought I would let you know how my appointment went with the respiratory nurse at the hospital, she asked how I was getting on with the oxygen, I told her it was a great aggravation and didn't do anything for my breathlessness. I asked why it was I had never had a consultation with a specialist OR a CT scan. She was quite defensive and said "we don't refer people to a consultant unless it was necessary!! she also said "you wouldn't get an appointment! I think maybe it is because of my age? (I am 78)
Maybe she just doesn't want to give me bad news, or they are too busy!
Do you think it would be worth my while trying to get the money together to see a Consultant privately?
Speak to GP ask for urgent referral. Just a thought are you feeling wheezy . If you have a chest infection that wont help. But agree with oshgosh morphine will help to calm you down.
This is a dilemma faced by many of us on oxygen. Does it help breathlessness? Having been on oxygen myself , I'm afraid that no, it did not stop me from being breathless. I would be breathless on exertion even with my oxygen on.
How many litres did your doctor prescribe? Please don't change the flow of your oxygen (even though it is tempting) unless you talk with your doctor about it first. I always found that carrying a small portable fan, and blowing it in my face helped calm me down on very bad days. Forgive me for asking but have you been for pulmonary rehabilitation ? You may have said before. You mentioned paying to see a specialist. Do you have to pay? Can you not see one in the NHS? I must say I am always in favour of a second opinion.
I'm sorry things are tough at the moment. But please remember we are in the heart of winter. The worst time of the year for us with lung issues.
Sending love,
Cas xx 🙋🐕
P.S. As mentioned already oxygen will protect your other organs from lack of oxygen. So it is important for you to have it if you've been told you need it. 😁
Having read all your posts I’m not clear as it what type of COPD you have -is it emphysema?
I think you need to see a specialist who would update your tests, provide a scan of X-ray, review your medication and maybe if you were suitable discuss any surgical options with you.
Your GP should refer you for this and if there’s a long waiting time it may be advisable to pay for a consultation if you can afford it.
Your GP can also refer you for a Pulmonary Rehab course.
My husband takes Carbocysteine with no obvious side effects.
Hi Corin, thank you for your reply, I have no idea what kind of COPD I have, I have never been told! until I joined this site I had no idea there were several variety. I will ask when I see the Dr.
I hate these umbrella terms, Asthma, lung cancer, bronchial problems and Antitripsin are all different and medications are different. Each time my doctor and nurses say COPD. I tell them I was diagnosed with Emphysema 12 years ago. and I don’t want an umbrella non diagnosis.
A family friend was told he had a brain bleed, I ask you, what happened to brain haemorage, they are watering down diagnosis, or in your case they haven’t properly diagnosed you. Ask for a diagnosis.
Incidentally, I decided to lose weight and went totally vegan. I find that helps my high bloodi pressure, controls my weight and gives me extra energy. It’s definitely the way to go for me. Haven’t been admitted to hospital in 6 years.
I’m sorry I have to disagree with others. Without oxygen I can do very little, with it I lead a pretty normal life albeit rather slowly. Definitely couldn’t do much without it particularly walking around supermarket. I know it protects my vital organs but it helps ME to keep mobile too. Joy x
I was always hyperventilating ie panting if I walked. I did pulmonary rehab which makes your muscles stronger so they do not need as much oxygen.
After 3years of sarcoid pulmonary fibrosis, I now need 24 hours oxygen.
I have now had a respiratory physio one to one for 6 sessions. This has been incredibly helpful. I now breathe in ( with diaphragm) hold for 3 secs, then slowly breathe out. This gives oxygen time to exchange with co2. She teaches me relaxation ad other tricks too.
I have walked outside every day for 20mins, only missing about 3days in the 3years. (it’s good for my mood. I find I walk about 20 steps, stop,get breath back, then go again. It takes me 20 mins to do what I used to do in 7 mins. But the second bit I can do do say 30 steps,then 50. I have always found my walking suddenly gets a bit easier after 7 minutes. I do exercises too which definitely help. Perhaps try 5 steps, rest, another 5steps , and then another 5. See if you can build it up gently. You could try the gentle exercises on the lung site. Sitting around too much makes me worse. Try to move a bit every hour. I know it’s hard but it’s use it or lose it. Going on oxygen , carrying tanks, or negotiation of long wires is very dispiriting, but it does protest your heart etc. I have also found outside, many people are very kind.
Have you got a blue badge. ? You will qualify for one
Hi Woofly, too much O2 can be dangerous if you are a CO2 retainer, it can make you acidotic and can cause all kinds of problems including increased breathlessness. You really should see a consultant.
Hi Woofly, I liked Joy123's reply but as has been stated a Dr's opinion is required before taking on supplemental oxygen. My Dr. won't give me oxygen because my o2 level when measured by him and other medical people remains stubbornly over 95%, however when at home I've seen it occasionally drop to mid 80's... like a TV, never goes wrong when the techies there
I used to have serious trouble getting to the bathroom in time (how demeaning and depressing) but invested in a power wheelchair, thank goodness the gov't gave me 75%, the chair rushes me to the loo now with sirens wailing Maybe you could wangle one somehow.
One more suggestion is find some distraction or hobby, I'm a 2 year combat vet from Vietnam and would never have imagined it but I bought a "Cricut Maker" and mess about making things with it including the most beautiful cards.... Keeps me occupied, out of the depressive state and quite happy... easy to say I know! Good luck, you've got lots of knowledgeable support here.
Just a thought - have you changed your inhaler recently. I became VERY breathless with a new inhaler and once it was changed I was much, much better. Good luck with everything x
When I went into Oxygen I was told it would wouldn't necessarily He l breathlessness but would ensure my major organs had enough oxygen to work more efficiently. In have learned to take things more slowly and to acknowledge when I can't do things. Have you been offered Pulmonary Rehab. I wasn't suitable before oxygen, but now my days are high enough on oxygen to join. This isn't just an exercise ckass, it teaches breathing and coughing techniques that might help you to cope better. Take all of the support you are offered and ask for any you think is missing.
Hi I have had experience of the private sector, often it;s the same department but from a different address or hospital. Try the private route ,at least you should get a speedier response and it may be a different treatment regime. Be aware that they may give you a quote for a specific time slot then up it if you go over the time allocated Oxygen has helped me & many others but it does need to be used as prescribed. you may find it useful to use it only when on the move. (Ambularory).There is a mobile gadget that you can take outside but this does only last approx 3 hours depending on the setting they have given you. However it does come with a car charger so provided you've got a ciggy lighter the time line can be increased. I find it very useful.
The mucus is a pain but it will move eventually, it takes a number of coughs to get it going, try carbocisteine and an acapello moves most things.
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