been told I have COPD has anybody hea... - Lung Conditions C...
been told I have COPD has anybody heard of a aerosure-medic gadget which is supposed to help strengthen lungs and improve breathing
Searched the site healthunlocked.com/search/a...
read it todays express,aerosure medic ,for copd, cf,bronch,asthma,the price is 179,99,or 4 monthly payments by direct debit,of £45,a month,and each purchase £1,goes to the british lung foundation,xxx aerosure-medic.com
Sounds like it does essentially the same as the flutter or the acapella both of which are much cheaper. Some people are even lucky enough to be loaned a flutter by their physiotherapist.
I notice in the literature (thanks twiceshy3) that it is essentially two machines in one.
For bronchiectasis it recommends using the 'mucus clearance' mode - this will do the same job as the flutter and acapella both of which are around £50 to buy.
For COPD sufferers it recommends a 'breathe easy' mode. I'm sure there will be a single mode gadget out there that will again cost a fraction of the price.
So one device with two modes for £180 or two devices covering the two modes for £50 each = £100. Thats the maths! And only if you need both modes.
I wouldn't jump in and buy one at this stage pompeylady. Find out more about your condition, how it is affecting you and what else is out there and proven before spending an awful lot of money.
Sorry to hear you have just been diagnosed with copd. I'm sure you have lots of questions/concerns. Do let us know how we can help you.
Just read more of the literature. The trials were done using 'healthy individuals'. They are still carrying out 'studies' on people with copd/CF. So they don't know how effective this machine is on people with compromised lungs. Not for me till more is known.
nor me but i just put it up for pompeylady to have a look,xxx
I agree with you happy feet !
i am inclined to agree with happyfeet, but like pompeylady i have much to learn, but the good thing is this forum is a great place to get different views on things,and learn., i hadnt even heard of flutter and acapella. anyway i have went very slightly off topic, so wish you well with the "earosure medic cadget" pompeylady, and wish you well, kindest regards,,jimmy
no I am not buying the earosure medic as the power breathe seems to be what I need but this site is wonderfull for the input from other people
thanks for the info,as you can guess I don't know much about copd,have never heard of a flutter or acapella will look them up I just wondered if there was something I could do to help myself .I gave up smoking 14years ago,didnt have smokers cough or any symptoms,but only recently get short of breath when out walking.The doctor has given me a blue inhailer and since using it i seem to have developed a cough or is it my imagination ha ha
The flutter and acapella are used to help shift mucus from the lungs during infection.
The guidelines that I was told to follow when looking at devices, appliances etc, were:
Are they available on prescription....even if your local health authority won't prescribe.
Can you purchase them VAT free....means they are registered as a worthy disabled aid
Are they recommended or supported by hospitals....not just in the companies advertising blurb but by the actual hospitals.
I used these criterias and bought a Power Breath Medic...for less than £30 including postage. Basically an empty chamber with a face mask but at the bottom of the chamber there is a variable restrictor. The idea is you do your 30 breaths with very little restriction and after a week, you increase the restrictor setting. It did work for me. I was able to down load result sheets to enter my daily figures from quite a few hospitals and I have found it very effective. Breathlessness is not a bad thing...it means your lungs have been exercised. It's the recovery that time and manner that we need to work on. I used this to try to get some lung support before I started PR. Just had my 4th week of PR and my SATS have gone from 88/90 at rest to 97 yesterday after 20 minutes on the cycle machine at level 3. The PR team had arranged for the oxygen nurse to assess me when I started a month ago....that has now been cancelled. I was using, on average, three Ventolin inhalers a month....I haven't had a single puff for three days now. I know that most of this is down to PR but I also know I wouldn't have achieved this much without doing my preparatory work with diet and the Power Breath. We should be able to borrow these devices but unfortunately not. I could pass it on but think that in the future, a few weeks after an infection, I can exercise my lungsno mater what the weather.
thanks for your reply.can you tell me where I can buy a power breath medic do boots sell them?and also excuse my ignorance but what does PR stand for as after my doctor told me I had pocd he just said he will see me in a years time hopefully he expects me to be around in that time.
I bought mine off the internet....just entered it into search and had a look. Some firms are too expensive, others say you have to download , print, filling and post back the VAT exemption certificate, others want too much post and packing. I just kept looking until I found one for a reasonable price, reasonable postage and VAT declaration on line.... PR stands for Pulmonary Rehab which is a course of exercise and education to get you to know how best to improve, manage and control your condition. Ours is held in a hospital gym, which put me off at first but when you go, no matter how doubtful you feel about ability to cope with exercise due to your lack of fitness, you will be surprised at what you can achieve...if you give it a chance. The improvement over the 6 weeks will astound you...and as for the "I'm too poorly for that", we have an elderly lady, she weighs 6 stone wet through, gave up smoking last year due to cancer of the jaw...she is only 79 too...she came carrying her oxygen bottle and started by doing chair based exercise. Now she is joining in most of the gym exercises. The exercises, apart from treadmill, cycle machine etc, can be done at home...they are so simple but they make so much difference. I would suggest that your next step would be to find the phone number of your local Respiratory team and get yourself an appointment. Your GP, and the surgery COPD monitor nurse, look after all patients with all sorts of ailments and complaints. The respiratory team and the physoterrorists that run the PR courses are full time professionals that only deal with breathing related health...they are the experts...they are the most practical experts too. My respiratory team over rides my hospital consultants because they know me personally and they have been to my home when I have been too ill to go out....they will sort you out and keep you informed. You need to make contact with them as son as possible and get on a PR course. Good luck.
thanks for your info phoned up my surgery and they are going to forward a letter to a PR course lets hope it isn't to long to wait .sorry to be a pest but how do you get a VATexemption certificate?
The flutter should be available on prescription from Drs. Mine was & is a great help to shift mucus. They can't shoot you for asking but probably won't offer it until you do. They won't prescribe the acapela though.
OK, strengthening lungs ..... good idea.
I bought a bag of balloons & scrounged an old bicycle inner-tube from a bike shop. Total cost about £1
Every day I'll blow one of the balloons up a load of times - & I might do that a few times in one day.
The innertube .... I first cut it in half & then cut it lengthways. Then I hold each end & stretch it across my chest by opening my arms out. Hold, breath in a BIG breath, breath out & then slowly move hands together. Don't let go quick, it's like someone just slapped you.
Also do step exercises ..... stand at the bottom of a step, put right foot then left foot on first step, then right foot then left foor off step, repeat until you've had enough. This is a good gentle aerobic exercise - great for lungs & leg muscles.
The thing most COPD people forget, the less you use your muscles the more oxygen they need when you do get round to using them, so the more your lungs have to work to supply that oxygen ..... even harder if your oxy to blood transfer isn't good. Keep the muscles exercised, which is something non of us feel like doing, but if you do exercise regularly you'll find you'll be able to do one hell of a lot more & actually feel less knackered & a lot more positive about yourself & life.
Example ..... I've more than doubled my 6-minute walk-test distance in one year..... I'm not getting better - that's defying medical science, I'm just exercising regularly, that's all.
I don't think I will try the inner tube exercise I might end up with squashed boobs ha! ha! and the balloons wouldn't ever inflate but thanks for your reply.
Seriously consider buying a Power Breathe "machine" . LLoyds seem to be the main stockist. I bought one 4 weeks ago and my normally 300/320 peakflow reading is now hovering just below 400. Mine cost £24.00.They'r e well worth trying.
Good Luck.
will do thanks for replying
have brought a power breathe can you tell me ,when you take a fast and deep breath in, is the load adjuster at the bottom of the handle cover supposed to move ,when I use it sometimes it moves up and other times it doesn't ,wondering if I am doing it right.
All this info is very good at a loss to know which is best cannot try them all? Has anyone tried the salt chair?
It's not a certificate as such, just a declaration. If there are items you buy that are classed as medical or medical aids, you do not have to pay VAT. Most on line shops, just ask you to fill in your name and then tick a box that will say that it is for you, or a relative or a charity that is disabled and that is that. There are guidelines as to what is or what isn't disabled but they are very long winded and complicated. Basically, if you have a long term or chronic condition, that may or may not be controlled by medication, you are disabled. You do not have to have a blue badge or be in receipt of any sickness or disabled allowances...just if you have a long term health condition that affects your life. It means that a wheelchair or any other device is available without VAT. If someone is deaf, they can still claim VAT relief on incontinence products, riser chairs...whatever. Incidentally, if you have a Boots loyalty card thingy, next time you go into Boots, fill in their form and from that point on any qualifying products will be VAT free.
thanks for your reply going to boots to see if they have a power breathe
hi,went to boots to buy power breathe ,they hadn't heard of it .So went to a larger store a couple of miles away they said the same only had the expensive areosure at £179 ,anyway I brought a spacer and asked for the vat exemption. was told I had to have a blue badge.I showed them a letter I had from the doctor saying I had copd still would not exclude vat.so paid up .Next stop was another chemist 5 miles away still looking for the power breathe.Managed to find one But they would not give vat exemption either,said I had to have a blue badge,so paid up again full price. Boots do my repeat prescriptions electronically so they have all the information on their computer but they said they had never heard of vat exemption for copd sufferers.
The shop is wrong on all counts. You do not have to have a Blue Badge or anything else. It is a self declaration...therefore if you lie, you are the one responsible, no one else. I have a feeling that I sorted mine out at Boots on line but can't be sure. Other supplies that I have bought on line, you just tick a couple of boxes to confirm that the products are for you and that is it...no Blue Badge, no signature, nothing. I would suggest that you get in touch with Boots on line or phone and have a moan. Nowadays, I just show my Boots card and the info is on there...VAT is taken off automatically.
I don't know if this will work but try clicking on this link:
incontinencechoice.co.uk/VA...
This takes you to Inland Revenue document that says that if you have chronic condition, you qualify for VAT relief.
Excellent information Brian.
thanks for the link going to print it off and show it ,you would think the pharmacist would have known.I think in future I will shop online it sounds much easier
Ok. if they haven't try on line. Another little thing I found helped was my inhaler spacer. Just stick an inhaled into it but don't spray it. Just use the spacer as a breathing machine. It helps get rid of CO2 about you need to spend time afterwards, sitting quietly and relaxing whilst you breath in through your nose and out through pursed lips.
Hi Pompeylady, I bought, via Amazon, the 'Ultrabreathe', respiratory trainer. On the box is says: for enhanced respiratory muscle strength, durability & performance.
I think it was about £20-£30. It's very neat, fits my pocket or small handbag. It doesn't look as though there are metal parts so it's very light.
Basically it's a bit like a divers mouth piece, you can alter the strengths of breath in as you get stronger. I'm mild (to moderate in winter).
Re PR, I did it early summer last year (when I was well) it was excellent. You will learn a lot. One tip, when they say a respiratory expert is coming for a talk be sure you take your inhaler so they can see if you take it properly. I found I'd been taking mine wrongly for three years! Good luck and well done you for searching out the best ways of self help, best way to go. 
You are not alone in that. It was explained to me during PR when we were discussing ways that we as individuals had found, almost by accident,things and ways of recovering our breathing. I demonstrated what I did. discovered it by accident when I was so breathless that by the time I had shaken my inhaler, fitted it to the spacer and got it in my gob, I had no energy left to press the inhaler. Tried it several times afterwards and always worked. The nurse explained what I was doing to my breathing. It's because when you get very breathless, you use your top chest muscles to breath rather than your diaphragm belly muscle. Breathing through a restrictor, gets the stale air and carbon monoxide out of your lower lung that has been trapped by all the short breathes, and gives fresh oxygen a chance to get to the bottom of your lungs.She said sometimes when you are very short of breath, you really are not. You feel it because you keep gasping in these very short breathes but breathing out very little....a bit like panic attacks. I was told if I was out and about and didn't have my spacer....being a bloke, it won't fit into my pocket...I can achieve the same results by making a noise when I exhale. By making the noise, you become more conscious of how little you are breathing out and so you have to try to make the noise a little longer each time...that will get you breathing deeper and then when you are able, carry out normal breathing control for a few minutes and as if by magic, you are back to normal without having Ventolin or any other inhaler. It is very much like a balloon....once it is inflated, it becomes very hard to get any more air into it...unless you let some out first.
Hi, Glad you've decided to use the Power Breathe.
The valve springs seem to set themselves once you start breathing.
I did notice the spring moving when I was at a low level but haven't noticed it since I've advanced a couple of levels. Will keep watch from now on and let you know what I find.
Whatever you decide, don't stop using the machine.
My peak-flow has risen from an average 320 to 370 in five weeks.
Take Care,
Cyril.
yes I will carry on using it did you also develop a cough I have strange!! I haven't a clue what my peak-flow is and have insisted on seeing someone at my surgery for some answers as I haven't been told anything about my condition just sent home with a ventolin inhaler
Hi, Pleased that you will continue to use the "machine". I too have a cough. I think the way the machine works irritates the throat a little. Nothing that I worry about.
I've had COPD for some 25 years and am still learning about it. I have an appointment with the nurse nest Tuesday and will go into her room armed with a list of new questions. Get answers that help you and ask to see a Consultant. I realised a short while ago tha tI haven't seen a Consultant except when hospitalised. That will be on my list, too.
Remember, if they don't give you the information you need to help you look after your condition, you can always change doctors.
Please let me know how you get on.
Cyril.
thanks for your reply I am seeing nurse on Tuesday and have information to book a PR course only trouble is I look after my 5 year old grandson every day while his mother is at work so difficult to find the time.
Hi, Would your grandson's parents rather see you fighting for breath or able to go play with their son? Can they not find someone to take your place for the occasions (usually twice weekly) when you attend PR? Tell them the situation and let them know it will only last for six weeks. I'm sure they can find a short-term alternative.. It's the least they can do for you. Cheers, Cyril.
out of the question they don't know that I have COPD told them it was ashma I am going to phone the hospital and see what can be arranged should be able to fit it in while he is in school.
HI, You must tell them. I hid mine from my wife for 10 years . When I did tell her she proved an excellent back-up whenever things have gone wrong. Tell them how it affects you and that it's not as bad as many people fear. With the help available most problems can be sorted at home.
Tell them and you'll be surprised at their response. They need to know just incase they need to call for help some time in the future. Incidentally, Emphysema is not as worrying as Asthma. Asthma can kill at the drop of a hat, not so Emphysema.
Good Luck and Take Care,
Cyril.
I am going to see nurse today I want to know the results of my test as I was just told I had COPD not what grade I am at.then I will decide if to tell the family.thank you for replying
Good Luck with your assessment.
Happy to "talk" about any problem, anytime. Cyril.
well you wouldn't believe it I have been told not to use the power breathe until I have been to PR which is in may.I must admit I had stopped using it and the cough had stopped.My rating is fev1 66% which I was told is moderate.The res nurse had never seen the power breathe or heard of it.Makes you wonder how they keep up to date if at all.Also what does post bronchial mean I have never had any infections only breathlessness.
Hi, Sorry in the delay in answering but my Little Sister passed away on Wednesday having fought Liver Cancer. Although she was in Canada we kept in touch every week.
I seem to have hit my goal with the Power Breathe, so now I use it every second day on level 5. My FEV1 is 1.15 and FVC is 2.56 so that gives me 44.92%. (Divide 1,15 by 2.56). This was last week, but wasn't showing any deterioration from my previous Spirometry Testing. If they suggest leaving off your Power Breathe you should heed what they say. However when you see the staff at the PR ask them for their advice.
Coincidentally I've been offered PR late April or early May.
When I was at the clinic earlier this week, I asked about Relvar Elliptor and the nurse had never heard of it and couldn't find it in her Pharmacapia.
Post Bronchial simply means After a Bronchial Infection. It could even have been just a mild chest infection when you were much younger. Not anything to worry about.
Take Care,
Cyril.
so sorry to hear your sad news the figures don't mean anything to me like a foreign language but will let you know how I get on at PR in May.
Boots sell them £180
