Breathe Easy groups

Hi yes I am in the UK Greater London.  I am going to enquire about the local Breathe Easy and also ask the consultant when we eventuall y get to see him about pulmonary rehab.  I assume the exercise are not too strenous as both my husband and I have arthritis.  We usually just try to walk around the park etc.

Don't worry about the exercises:  most people with COPD aren't young and physiotherapists aren't stupid.   They're not strenuous at all in my experience and not everyone is expected to have the same level of fitness, jsut as not everyone will be experiencing their COPD in the same way or be at hte same stage.

I was lucky enough to be diagnosed in the early stages but the class included a few people who couldn't move around at all without their oxygen tanks and other people in between those two extremes.

Sorry if I've been misleading people:  from earlier descriptions of Breatheasy groups I assumed they were rehab groups.

I don't see much point in them as you've described it:  how does any of that help you to breathe easier, live longer or manage your COPD better?

They are usually run by a respiratory nurse who gives a little talk as well and will answer questions.   Some of the talks can be quite useful ie the fireman was to those on oxygen and also gave general advice on how to stay safe from fire.  

I am sure you wouldn't want to but for those who want to meet others with lung disease and make possible friends it is useful.   They also go on regular outings so you are asssured that they will go at your speed and not rush off leaving you behind!  

Sounds OK but you're right, I don't need any more social life, I have quite enough as it is, living in a small community with lots of creative and other groups - eg community meals etc

Yeah, speed or lack of it is definitely an issue:  my daughter and grandkids understand I sometimes can't keep up, I just wish I could explain it to my mad kelpie dog!

I liked the structure of the rehab group I attended (I'd also attended a similar cardio one with the same physio's after a heart attack):  the sessions were divided between a talk by an expert in a particular area (diet/medication and so on) and structured exercises, a few as a group and the rest personally designed for each person - excellent personal training on the cheap I thought!

Also, I can go back and do another course if I want to.

Breatheasy sounds more like support groups such as Puffing Billy at the other end of the moiuntains where I live, named after a local tourist steam train.

 

Well they are more serious than that here.

Unless he already has episodes of suddenly not being able to breathe I don't see why driving should be a problem.   As for coughing, plenty of people who don't have COPD have coughing or sneezing fits driving:  again, does he have severe coughing with no warning when sitting up in the daytime?   

Driving an ordinary car is hardly strenuous and I don't see a problem.

Cold weather however can make COPD symptoms worse because the bronchial tubes contract in the cold.  I used to love to go outside and look at the mountains here at night and early in the morning, but I usually do it through a window now.    If the car has a good heating system I don't see why it would be a problem:  wherever he is he'd need to stay out of the cold anyway.

Cold and very cold are relative terms anyway:  where I live in Australia is regarded as very cold in the winter, but only gets below zero celsius once of twice a year:  I'm sure you have much colder weather than that for much longer periods.

 

Thank you for your reassurance.  I suppose the reason why am worried is because I have had to call an ambulance twice once on  sunday morning he was ok apart from his cough before bed but woke early short of breath went back to sleep and when he woke he was bend over trying to breathe and the blue inhalers did not work.  They kept him 3 nights.

That was the nexgt Wednesday and the same thing happened the following Wednesday in the evening this time even worse although as soon as the ambulance got the nebuliser on him he started to recover a bit.  This time he was only in over night and you know the treatment he is now having.  He does have coughing fits as well daytime and night.  I suppose it is early days and I should see how things go over the week or so.

 

Sorry if I'm asking for info you've already given:  does he have Symbicort?  I used to cough so much at night I got hardly any sleep unless I slept sitting up in an armchair, until my gp prescribed symbicort and it's only happened once since when I'd been exposed to a lot of cigarette and other smoke at an outdoor music venue.

I should say though that when my oxygen levels were checked regularly at rehab they were at normal levels in spite of the COPD and I do know that can vary a lot from person to person or from time to time.

COPD can be a frustrating condition BUT it is manageable even thought incurable, and we can take a lot of responsibility for how well we feel and (hopefully) how long we live and with what quality of life:  I'm notorioius for always being able to come up with "it could be worse" and it could, it could be cancer.

Take care of yourself too, won't you?   I do it on my own but can imagine how hard it must be to see a loved one in such discomfort and not having a magic wand to make it all go away

Yes he is on symbicort, only been on it around 2 weeks.  I have been on it for years.

Thanks for your kind words.  Yes it is hard to watch a loved one in discomfort.  We are lucky to have each other and I have good family although they are not local.

Take care and I will let you know how it all goes.

Hi  You may have read my other message in my original post but just to let you know we made it up to my daughters and back.  We stayed for a few days hectic with grandchildren so both very tired when we returned.  He coughed a lot whilst up there.  Still a bit worried about going up again at Christmas as it will be colder.  Still waiting for consultant appointment despite chasing it up.  Just typical with all the NHS cuts and waiting times.

The colder temperatures may affect husbands breathing, and then there is the need to try and avoid people who may be infected with a cold or flu virus.  During winter months in UK its something we all face.

Its down to weighing up the risks in attending social events during the more vulnerable time of year against the desire to see family, relatives grand children.

A heated vehicle should help with breathing in the winter time, but getting too and from the car could be challenging.

People you are staying with could be free from colds etc which would reduce risks in favour of a visit.  

Getting a cold for a normal lung person could just mean a week or two of the sniffles.  To a lung patient their is a greater risk, a cold can result in a lung infection which needs treating asap (emergency meds ABs and prednisolone) patient needs to stay in the warm with a lung infection to help preserve lung health and avoid further lung damage.

Where temperatures are very cold, its not advisable for lung patients to venture out but if they need to, to wrap up warm and don't stay out for too long, take ventolin inhaler med 20-30 mins before venturing out etc.

Do chat with the Consultant about your concerns and see what is advised also enquire about having the emergency pack (with advice how and when to use it) for over the Christmas Period.

BLF have a page (I may have posted the link on this before) concerning 'Cold Weather and your lungs'.  Check BLF home and enter topic in their search box.

Check Tips + post, look for link to BLF helpline, (about 9th reply down) the BLF Helpline can advise you further on any concerns you may have.  Tips + post here:   https://patient.info/forums/discuss/tips-know-the-difference-478568

Best wishes V

I agree with all of that, except venolin won't help with emphysema.

I frequently weigh up going out to live music, which I love, and exposing myself to cigarette and joint smoke, knowing I'll have breathing issues for up to 2 days afterwards.  

I'm in the process of getting new dentures which involves travelling into Melbourne and its polluted air at least once a week:  if I want new false teeth that's what I have to do in spite of the negative effects on my health.  I've tried wearing a smoke mask but it fogs up my glasses and my vision is bad enough already with a rapidly deteriorating cataract in my right eye.

It's all about informed choices.  I keep up my medication, exercise and breathing techniques and can only  hope that my social life and dental issues don't result in further permanent deterioration,

Ventolin on its own won't help emphysema.  But many patients in UK that I know of do use ventolin as their rescue medicine in addition to their preventative inhalers and long term broncodilaters.

Do you mean emphysema patients with late stage COPD?   I've been told ventolin makes  no difference with emphysema, but that may be because I've maintained my lung function level at 70% since I was diagnosed.    So, I'm wondering if maybe it's useful in later stages of emphysema?

Ventolin is purely a quick acting broncodilater it is a rescue inhaler. It helps widen the airways, allowing us to breathe more easily.

Most all lung patients in UK are advised to carry this rescue inhaler with them wherever they go should they find themselves in a situation where suddently the airways narrow due to pollutants or other irritants like pollen, soap powder isle in supermarket etc. Some may use it just prior to walking out or before exercise to help endure and achieve more etc.

Someone with very mild lung damage may only be prescribed ventoline as this initially may be all that they need to help them get by.

For more advanced COPD (emphysema and chronic bronchitis) and other lung conditions, patients may be prescribed a nebuliser with ventolin capsules to use when they are in greater difficulty getting the medicine into their lungs.  

 

Thanks for the info:  I reckon I haven't found ventolin makes any difference because my emphysema is still at 70% lung function as it was when diagnosed 3 years ago.    Spirometry with ventolin makes no difference so far, so it seems my bronchial tubes are ok - again, so far