Breathe Easy groups

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Hi does anyone. have any experience of a Breath Easy group.  I believe they are run by The British Lung Foundation.  There does appear to be a local group for us.  My husband who has just been diagnosed with COPD is not keen on this sort of thing but I thought I might give it a go.  Does anyone know what goes on at these groups.  I have read on this forum about Pulmonary rehab, but nothing has been mentioned by the hospital.  When he sees the consultant I will ask about it.  

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  • Posted

    From earlier posts on this forum the groups you mention are similar to the pulmonary rehab groups we have in Australia and I strongly recommend that anyone with COPD join one.   He may not be keen on groups, but is he keen on living longer, slowing down lung function deterioration and learning how to manage his condition?

    I've kept my lung function at the same level as it was when diagnosed 3 years ago by following what I learnt about breathing techniques and specific exercises and although I'd stopped smoking when diagnosed I'd smoked for more than 40 years before that.    Advanced COPD is really nasty and I'm keeping on with what I'm doing to postpone that as long as possible.

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    • Posted

      Thank you for your reply.  I have made my husband read it not to frighten him but to make him realise he has to take it seriously. He is now saying perhaps we should enquire about the local Breathe Easy.  So I will enquire next week.  I would like to go as well not just to support him but as I have asthma allbeit mild I might benefit.  The rapid response nurse has just left.  They are hoping to wean him off the nebuliser tomorrow.  She is going to ask the doctor about him taking the Spiriva with an enlarged prostate.  Next week I am making an appointment for the gp for the rescue pack and to talk things over.

      Hoping I can get an appointment.  Not sure what is is like in Australia but you have probably read about us brits complaining about getting gp appointments.  One good thing he has lost 3lbs in weight which I hope he will continue to do.  He is overweight (mostly beer belly) but he cut it right down.  One last thing you say that you stopped smoking when you were diagnosed 3 years.  Do you know what the future holds for someone like my husband smoking from mid teens to age 62. He stopped smoking 7 years ago whilst he was still at work.  He has only just been diagnosed.  From your experience do you think this will help him in the future or has the main damage already been done.  I know you are not a doctor but I wondered what you think.  Meanwhile concentrating on getting fit for big family party at new year 4 members including our own twin daughters are all 40 within days of one another and my husband has his 70th in March.  Nice things to look forward to.

      Thanks for your advice and your straight talking.

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    • Posted

      And thank you for your thank you!   COPD varies a lot from person to person:  what's his percentage of lung funtion?   Have stages of COPD been mentioned?  

      I'm not sure if you've understood me correctly:  I also smoked from mid-teens to 62 and had been off the smokes for a few years when diagnosed 3 years ago:  I have my 70th birthday next year.  I would think the earlier he stopped smoking the better but other factors come into it too:  how much he smoked, heredity, general heatlh.    

      Stopping smoking at any stage is the most important thing anyone can do and also staying away from other people's cigarette smoke and other airborne pollutants as much as possible.   

      At rehab you'll have lots of opportunity to ask questions and learn from other people's experience:  COPD is certainly variable both between patients and for each individual:  some days my breathing is fairly ok and my energy levels good but I only have to be around someone's cigarette smoke or go into the city and be exposed to pollution and I can be low energy and breathless for up to a few days.    

      I live in a high risk bushfire area and am dreading the coming summer:  I"m fairly safe from flames where I am but the smoke will get me if I don't get out in time and now I've been told I may have to wait up to 18 months for a cataract operation, which is very scary considering I can't see to drive at night if that's when I have to get out.

      The availability of GP appointments in Australia varies a lot from area to area:  where I live in the mountains outside Melbourne I've fairly recently found a gp in a one man practice with a nurse practitioner who has post-grad qualifications in pulmonary medicine and in an emergency (eg suspected pneumonia) can usually get to see him the same day, non-urgent stuff 2 or 3 days.   Specialists are another matter:  without private health cover it's sometimes a long wait to see one unless you have enough money to cover the gap between the government rebate and their exorbitant charges.

      I hope I've helped  - all the best and let the forum know how you get on

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    • Posted

      Hello again.  First thing to say is that all his lung function tests and blood tests for allergies etc have been put on hold again because he has been on steroids again.  He received an appointment this morning for lung function tests for 28th of this month, so he does not know yet about lung function or staging.  

      I appreciate what you say about smoking and everybody being different.  All I can say is that he has been off the cigarettes 7 years and like you smoked from mid teens until 62.  Quanity about 20 a day in the later years he rolled his own.  As far as general health I am not sure what I can say is that on his dad's side they all lived long lives despite some being smokers he had about 8 or 9 uncles/aunties most of which lived to between 80 and 100.  His dad a life time smoker lived until he was 84.

      Probably all beside the point.

      It is hard that you may have to wait upto 18 months for your cataract surgery.  I have had both eyes done and I can sympathise with you on not being able to see.  I had one done in Nov 2012  and it was successful.  I had to wait until Jan 2014 for the right eye it was to do with my local hospital eye clinic outreach starting cataract surgery and them keeping putting the starting date on hold.  It will be great when you have had them done. I hope you don't have to wait too long.

      The nurse has just phoned to say that she has spoken to the doctor and it is alright for him to continue with theSpiriva.  Apparently it is just a warning and say should be no problem but if does notice urinary problems then to stop the inhaler and see gp immediately.  

      Despite all our problems in the UK we are so very lucky that we have the NHS  athough you do have to wait sometimes ages to see a consultant.

      I am glad you have a gp who you can see pretty quickly if needed.  Living where you do must be very worrying for you as well.

      I will report back we have some clear idea of lung function staging etc.

      In the meantime all the best to you.

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    • Posted

      Hi Jude, I have been reading your post with interest..I live just outside Melbourne, Melton in fact, on the way to Ballarat.. Finding GP appts here is not bad, finding a GP with a brain and not just a script writer, is harder, and after being told by 5 GPs at the same practice that my issues were 1) hayfever 2) COPD 3) Asthma 4) none of those try Whooping cough 5) Not COPD Not Asthma and so on, this since Nov 2013 till I decided to forgo anything and got to a respiratory spec. eating comes a long way down the must do chain below breathing!! and I have Bronchiectasis which in turn comes under the umbrella term of COPD. All this time I have had it seems and underlying lung infection Mycoplasma Pneumonia, wrongly treated, damage to the lungs, and windpipe with scar tissue due to coughing..

      I am now heading to pulmonary rehab next week.  To the poor house this week after paying the bills associated!! Living on age pension doesnt leave a lot..

      But I have a DX...a step forward!!! Lucky you to find a pulmonary nurse with a GP! Take care xx

       

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    • Posted

      Well g'day from the other side of the city - Warburton.   That's a dreadful tale, what's wrong with some of these idiot doctors, it's not rocket science to do a spirometry test and work out what to do about the results....

      Why the poorhouse???? I don't pay for anything medical on the pension, I even insist on specialists bulk billing me bc I can't afford the gap.   Surely rehab doesn't cost anything over there?   The one here was $4 or $5 a session but I was really broke at the time so they waived the fee.

      I know about living on the pension, esp in private rental as I am ... constant juggling act with $ ....

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    • Posted

      I had the gap to pay each time of 7 visits..if I had waited for public, that was another 8 months at least I was told, and yes, had numerous spirometry tests, all interpreted differently..and incorrectly!! right now I am coughing up another lung..boy..this is debilitating and depression isnt it..? well so I am finding it...rehab is free I hope, may have a small co payment.. and I spent 23 yrs as carer for husband and he went into age care, I couldnt manage the cost of private rental (we managed it on joint pensions) and utilities etc..so I moved in with family, still need to pay my way and my car costs etc.. so not actually poor house (said in jest) but nothing left in the bank..and it is a juggling act one that at 68 I am not enjoying.. having a bad day sorry

       

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    • Posted

      Ha, we're even the same age:  I'm 69 next month.   

      I don't get how things can be so different on different sides of the same city:  I had my first spirometry test at a public patient, I think about 3 weeks wait to get an appointment and definitely free.   I don't go to gp's who don't bulk bill:  were all those "gaps" for specialists?   They are so greedy they make me sick, no way I can afford that gap which shouldn't even be there anyway.

      I only manage private rental because I do casual call centre work from home, I certainly couldn't pay private rent on the pension.  I like to have at least $500 in the bank, but at the moment it's down to $200 and that worries me: what if I need car repairs or a vet bill for my dog?

      Take care - I hope you get the rehab free:  don't be embarrassed to do what I did and just say you can't afford it, can they reduce the fee or waive it.   They can only say no.

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    • Posted

      Hi nanooskar Bronchiectasis is slightly different to copd, not listed under copd banner.  COPD is just one of many lung diseases as is Bronchiectasis.

      You can check the difference by going to the Lung Foundation Australia website and putting in COPD and then Bronchiectasis in the search box.

      Or for people in UK go to BLF website link providing on comment to jude in shallow breathing post,  https://patient.info/forums/discuss/shallow-breating-478271

      also patient uk will have information as well.

      https://patient.info/health/chronic-obstructive-pulmonary-disease-leaflet#nav-4

      https://patient.info/health/bronchiectasis-leaflet

       

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    • Posted

      Please ...... COPD is  NOT a distinct disease but an umbrella term for a number of CHRONIC OBSTRUCTIVE PULMONARY DISEASES.  

      I know someone who died of bronchiectasis and he was definitely classified as having COPD

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    • Posted

      Thanks for the supportive words..and yes..my bank account is about the same at the moment..lost one of my little dogs last Nov. he was 19 and I had to pay the bill off.. I was DX with sleep apnea this week and advised it would be helpful to my oxigen levels o/n...the lass at the clinic organised me a rental at pepercorn rent for a month to trial, gives her enough data to determine the value of having a CPAP ongoing!! I am just not coping too well with it all I don think..I dont have friends, the vanish when you are a carer forever, and my daughter is sweet but going through her own issues, in fact is in surgery this evening! so stress I suppose is not helpful...thanks for listening, I am usual less ready to vent..I just want more info from professionals I suppose..what besides Spiriva and Ventalin, anti biotics for flareups..I am hoping rehab will give me answers. Take care hun xx

       

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    • Posted

      Thanks Vee..interesting isnt it that I actually asked the respiratory 'specialist' about this and the response was that COPD is umbrella term covering etc..so darn them all..

       

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    • Posted

      Bronchiectasis is a lung condition.

      COPD doesn't cover all lung conditions.

      I posted Tips and know the difference topic to help avoid this confusion:

      https://patient.info/forums/discuss/tips-know-the-difference-478568

      COPD is an Umbrella terms for Chronic Bronchitis and Emphysema

      https://patient.info/health/chronic-obstructive-pulmonary-disease-leaflet

      Bronchiectasis Information leaflet:  

      https://patient.info/health/bronchiectasis-leaflet

      Chronic Bronchitis is not the same lung condition as Bronchiectasis.

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    • Posted

      Please jude, read the information and you will learn the difference between, COPD and Bronchiectasis.

      Perhaps you are confusing bronchectasis with chronic Bronchitis, the latter does come under the COPD umbrella but not so the former.

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    • Posted

      No I"m not confused about the difference between those 2 conditions:  I know people living with one and people who've died from the other.

      This debate has happened on here before and there seem to be different definitions of COPD in different countries.  I stick with the definition I've had confirmed at rehab:  Chronic Obstructive Pulmonary Disease includes all conditions which fit that definition.

       

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    • Posted

      You will find the lung foundation Australia, list Bronchiectasis and COPD separately.

      But it doesn't really matter if you hold on to a different opinion, but I think its helpful to try and pass on accurate information to others. 

      The Australian Institute of Health and welfare, under chronic respiratory conditions, lists the differences also, AIHW.

      In UK, COPD is the umbrella term for chronic bronchitis and emphysema, all other lung conditions are not under the COPD umbrella.

       

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