I would like your thoughts on an issue I have with COPD.
My dad was diagnosed with COPD about 5 years ago and handed a bunch of inhalers. He contracted pneumonia from these and hasn't been well since. It's heartbreaking as he's went rapidly downhill and each time he visits the hospital, he comes out worse. I believe it's the inhalers and oxygen that have made him so ill. As a COPD patient who cannot walk the length of themselves and who the hospital insist use oxygen 16 hours a day, could you blow up a balloon and still speak afterwards. Another strange thing is that his oxygen levels increase when he exhales rather than inhales? Is that not strange for someone with COPD? To be honest, I feel the COPD test is just stupid. How can someone's lung health be determined by blowing into a machine? I'd be interested on your thoughts on this as respiratory nurses won't even listen to him. In fact, they have put a load of nonsense on his files, such as his oxygen levels improve with oxygen. This is rubbish as they don't. To be honest, I think this oxygen business is just a sales technique, and the more they can push onto patients, the more perks they receive.
Very frustrated,
Julie
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Julie9983
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Julie, I can understand your frustration and upset at your dad's condition. As regards the oxygen, you can tell by monitoring his sats ( 02 levels) by buying an oxymetre. If his levels fall below 90/89 then he probably does need it to protect his heart and brain suffering lack of oxygen. Could you change hospitals or doctors ? The treatment in the one he's attending doesn't sound very humane. I hope things improve for him.
Hi Billiejean, thanks for reading my post. We already have one of those oxygen meters. He never takes it off his finger and that's where part of his problem lies. If he sees it moving at all he panics which lowers the oxygen reading again. He also wakes in the night to check it. To be honest he has been brainwashed and scaremongers do by the respiratory nurses. Yes his readings are low but since he's been on oxygen, he health has deteriorated and I can't help but wonder is it doing him more harm than good or even does he have COPD. Especially since his levels increase when he exhales rather than inhales. Dad has some sort of loyalty towards these silly doctors and nurses. He treats them like gods even though they are stabbing him in the chest. I hate the nhs and will be so glad if the conservatives could privatise it, especially the staff. They are overpaid and underworked in my honest opinion. I seen them enough times to know. Sorry about the rant, just extremely frustrated at the minute.
Obviously checking his 02 every minute is crazy and must make him hyper stressed and anxious. He badly needs reassurance and how to deal with his condition. Could you persuade him to take off the oxymetre and see if he felt less stressed. COPD is a difficult condition but most people here, some of them with very severe disease, seem to manage well and get support from their medical team. As a short term thing, you could ring the BLF helpline and they would give you advice and practical suggestions. It would ne so good for you even, to get it all off your chest to professionals who know all about COPD.
Hello Julie, I do not understand how you can contract pneumonia from inhalers and how can a medicine as natural as oxygen make you ill ?
Oxygen is used to help a person stay active and keep the red blood cells flowing healthily throughout our bodies.
Perhaps your Dad would greatly benefit from attending Pulmonary Rehab , you could go along with him and learn a lot of helpful information on copd and meet fellow copders.
I can increase my sats by breathing fully and deeply but gently, there are lessons on youtube , maybe you could do some together, the breathing excersises are invaluable if you should wish to learn meditation.
Steroid inhalers increase the chance of getting pneumonia. Mainly from the normal amounts of fungus and other bacteria that are present within the lung tissue.
True a walk to the park increases the risk you will get run over by a bus, but let's say you get hit you die. It only takes getting a serious pneumonia once and he dies.
Hi I don't understand one bit off your post. Not one bit makes any sense, some people can get side affects from certain inhalers, but they can't give you other illnesses. And what you say about oxygen is beyond me.
Hi katinka yes I'm away work I'm supervisor with a cleaning company. Just mainly organise and check things no manual stuff can't manage much that now lol.
hi tam phew I was panicking a bit when she said Spiriva caused her dad to get pneumonia thank goodness for you and farmer d. funny how I get loads of good messages and cling to the one bad one, I feel much better, hope you two are ok too x
There are lots of people on this site,recently we seem to have attracted some rather ignorant folk who start typing before engaging the little brain power they were blessed with.This attitude does not deserve any part of our magnificent National Health Service,nothing to stop them paying through the nose for an inferior service right NOW!D.
how did you get on at the Brompton yesterday FarmerD? Hope it went well. Pete didn't much care for his PET scan as his back hurt afterwards through having to keep still. Never mind, it is done now so off to the Brompton on the 26th. You take care. xx
thank goodness for all the sensible and caring people on this site. I love the nhs, they have always served me and mine with care, oooh well except for one nurse but that was years and years ago lol
Hi Mickyjoan,the NHS is one of the biggest employers in the world so there are bound to be one or two not up to scratch but in the main I agree they are great!D.
Could you organise some cleaning for me? The world needs guys like you much more than brain surgeons. We all need clean. Very, very few of us need brain surgeons.
Not enough gratitude/remuneration/consideration is shown to you guys.
Perhaps this above link will help you understand how steroid inhalers increase the risk of developing pneumonia. Also read up on pathophysiology of COPD. Best of luck.
I have been on Seretide , Salbutmol and Spiriva for 16 years and only had pneumonia once in that entire time. So I suppose it must be different for each individual.
Oxygen, does make me ill when on it in hospital , But I am lucky.. I don`t need oxygen for day to day living.
I am always sceptical of conflicting reports that seem to pop up across the internet like a virus..
My advice would be, do as your own consultant suggests take all meds, keep a good diet , no smoking , exercise, and don't panic yourself by googleing things.
So sorry to hear that you and your Dad are so unhappy with the service you are receiving. Perhaps the BLF Helpine would be able to clarify things for you? That have been a big help to me over the years.
Hope you and your Dad can find some accurate information soon and that life settles for you both.
It might be an idea to also go back to read the replies to your post a couple of years ago. There were some fantastic replies there some of which you may find relevant now.
Good luck to him. If he's not satisfied with his GP he can change him/ her.
PR (pulmonary rehabilitation) is excellent and he may benefit and learn a lot to help himself. many people on oxygen plus their helpers on the courses.
I have been diagnosed with COPD for 12 years and am on Symbicort (Budesonide) twice a day and Spiriva (Tiotropium) once a day. I also use Wrights mini Peak Flow Meter prior to using the inhalers to monitor changes. No drug is without risk but I was advised to rinse mouth and throat after every inhalation to reduce the risk of fungal infection and that dental hygiene was very important. I have also had the anti pneumonia jab. I try and exercise enough to make me breathless two or thee times a day. I find that being in a car with air conditioning on tightens my chest and being in any airless humid environment has the same effect. The m.thorax,bmj trial fund that the main culprit for increasing the pneumonia risk was intended to prevent asthma spasms. The alternative to these medications is more discomfort, breathlessness and an increased risk of pneumonia. Peripheral blood oxygen can be affected by circulatory problems as well as breathing problems and both aspect need to be investigated. You have to trust and believe in the treatment and report back on any disconcerting changes straight away. Most people in the NHS are honest and caring.
Hi Julie I think you need to attend a pulmanory rehab course to understand more about it, it is obvious from your rant that you know nothing about it. I was diagnosed years ago with copd I to have had pneumonia twice but it was nothing to do with the inhalers or the oxygen. It's a progressive illness but if handled properly you learn to live with, the doctors that have looked after me over the years have been amazing. Hope you find some solutions to your frustrations
Hi Julie, sorry you feel so angry and frustrated, I fear maybe the strain of looking after your Dad is taking its toll. It is unlikely that the inhalers and oxygen have made your Dad worse, unfortunately COPD is a degenerative disease and will all by itself get worse gradually, and although there is no cure there are at least ways of slowing down it's progression. Exercise, diet rehab etc. The point you make about his oxygen levels being better when he exhales would maybe seem to suggest that this is because when he exhales he gets rid of the carbon dioxide in his lungs which then allows for the oxygen left there to transfer into the blood stream but would suggest you phone the BLF helpline and get some expert advice. I suspect you are tired and thus getting depressed and maybe feeling a bit powerless and helpless as your father's health declines, maybe you could do with a break and a step out of the situation - please consider trying to get some help for yourself - my apologies if some people have been a bit short with you in their replies - guess they have their own stuff going on too. Take great care of yourself and best wishes to your Dad. Thinking of you. Carole xx
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