Introduction : Hi my name is Jimi I am... - British Lung Foun...

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Introduction

Purpl3haz3
Purpl3haz3
57 Replies

Hi my name is Jimi I am 65 years old and recently been diagnosed with Bronchiectasis not sure if I’m on right site or not , not really sure yet of anything yet not getting too much information from specialist feel slightly vulnerable to be honest

57 Replies
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sassy59

You’re in the right place Jimi and welcome to you. I’m sure you’ll get replies soon. Hang on in there. Xxxxx

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Purpl3haz3
Purpl3haz3
in reply to sassy59

Thank you.........bless

1 like
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Caspiana

Hello Jimi.

You are in the right site and they best site! 😁 Welcome. I don't have the same condition but there are many here who have your condition. You will find good support here. Best wishes to you.

Cas xx 🙋

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Purpl3haz3
Purpl3haz3
in reply to Caspiana

Thank you ..............it’s a little clarity I’m seeking.............Love Peace and Happiness

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Purpl3haz3
Purpl3haz3
in reply to Caspiana

Thank you it’s just a little clarity I’m seeking..........Love Peace and Happiness

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Littlepom

Hi Jim, I am one of the very long term bronchiectasis folks on here. Please let us know what you are seeking clarity on and we willl be happy to support you. I may not come back until some time tomorrow because I have just got into bed but I will respond to you.

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Purpl3haz3

I currently suffer from bouts of breathlessness and hoping this doesn’t become disabling and also I find myself getting embarrassed at times trying to release the build up of mucus when out and about is there anyway of doing this discreetly...............sorry I have many questions but a specialist whose not very informative

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Littlepom

Do you have a bronchiectasis specialist consultant? This is crucial because GPs and General Respiratory consultants do not have the training or experience to treat you properly. The specialist should be able to answer your questions but most importantly they decide which antibiotic treatment in which form you need to tackle exacerbations. They tell the GP which antibiotics ( high dose at least 14 days) to give you to at home for when you feel an exacerbation starting.

They also have physiotherapists who will teach the breathing and tecniques to loosen and empty your lungs of mucus every day.

Self management is the only way that you yourself can ensure that you lead a full and comfortable life. You choose a time or several times in the day when you wotk to clear your lungs so that you can go out and about without feeling that the mucus is building up, causing you to need to get rid of it. Having said that, it has been a lifelong habit of mine always to know where the loo is when I go out, edpecially if I am not very well.

Check whether the consultant you have seen is a bronch specialist. If they are not, look on the internet for one at a big teaching hospital near you. Take the name to your GP and insist on a referral. Do not take no for an answer. All bronchs will tell you that experience has taught us that we have to be very proactive in the interests of our health and vociferous in sourcing the right treatment. I hope that helped for a start.

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Purpl3haz3

Thank you very much you’ve given me lots of good information as for the bad winter you endured I believe I’m now starting on same journey as I’m in the middle of a dose of flu proving most uncomfortable

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Littlepom

Make sure you get your flu jab and the pneumonia vacc for next year.

Watch your chest most carefully during the flu. At the first sign of lots of darker heavy sputum get your GP to give you 2 weeks antibiotics and keep getting the mucus out so that the germs have nowhere to breed.

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Purpl3haz3

Thank you I have made appointment with doctor and shall drag myself there later today recently had pneumonia jab so getting flu felt more like an ambush as for mucus at moment I’m getting it out! I believe I’m getting it out of every orifice known to man take care ..........bless

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HungryHufflepuff

Hello and welcome 😊 You are in the right place.

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Purpl3haz3

Thank you............Bless

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shouty

Hi & welcome. So many knowledgeable folks here especially Little Pom. I was only diagnosed couple of years ago but having a good B'ect Conultant & nurse makes all the difference. Also my GP surgery is brilliant & allow me to start medication when I feel an exacerbation coming on. That's because I have "rescue" antibiotics prescribed that I access online which go straight through to the pharmacy. Please ask as many questions as you need as it can feel daunting at the beginning.

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Purpl3haz3
Purpl3haz3
in reply to shouty

Thank you yes I agree it’s quite daunting I don’t seem to have a direction at the moment but thanks for the pointers I feel easier already and sorry probably be asking more questions apologies..........bless

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wheezyof

Hello Jim,

I have bronchiectasis and another lung disease.

The British Lung Foundation is the very best source of information. Look on their website or phone their helpline 03000 030 555.

You can speak to a very helpful person , explore the site and order an excellent booklet about Bronchiectasis.

Ask your doctor to refer you for Pulmonary rehab. You will gain a lot of knowledge there.

Mucus clearing : you will get help with that from BLF and rehab.

You will learn a good huff and puff method of clearing it. You can find clips on Utube too.

You are not alone with feeling vulnerable. You may feel depressed, angry and all sorts of emotions - don't worry too much, it all settles down, it's just a shock being told you have a chronic condition. However it's not the end of the world.

Keep in touch with us all xx

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Purpl3haz3
Purpl3haz3
in reply to wheezyof

Thank you for your kind words feels less daunting knowing there is others out there with same condition but with more experience ...........bless

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Pjmf

Hi Jim,

I found out that I had bronchiectasis in a follow up letter to my GP after seeing a few consultants. No-one had thought to tell me or explain what it was ! Anyway, after one very bad winter I am now doing great and managing it with physio, as much exercise as possible, swimming especially, in the sea if you can, salt breathers, home sinus wash, lots of hand hygiene. I was lucky to get referred to the Brompton, but a consultant in my local hospital sees me every 6 months, and is my ‘advocate’ with the GP practice, telling them to make sure I can take in sputum tests when needed and have my backup abs. I was afraid to fly, certainly big distances, but someone on this site answered my question on that, he travelled extensively ,so I took my dream holiday to Namibia last year. The dry heat really suited me. I always use antibacterial wipes to clean around me on planes and trains, drapea scarf over my face if someone is sneezing, suck anti bacterial lozenges ,sniff salt, and this way I can usually avoid infection. Good luck. I also felt very vulnerable, but now living life to the full. 70 next year and planning on dancing the night away.

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Purpl3haz3
Purpl3haz3
in reply to Pjmf

Thank you reading your very positive words has filled me with a new sense of hope and positivity feelings and as for dancing the night away I’m looking forward to reaching that stage............bless

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katieoxo60

You are very welcome enjoy your day

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Purpl3haz3

Thank you take very good care of yourself............bless

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Tinker26
Tinker26
in reply to Pjmf

Love this xx

1 like
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Purpl3haz3
Purpl3haz3
in reply to Tinker26

Thank you......... bless

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Littlepom
Littlepom
in reply to Pjmf

It’s lovely to hear that you are doing so well

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katieoxo60

Hello welcome to the site, ask any questions you like I am sure someone will come along with an answer. I can't help as I have COPD/Asthma. Take care and best wishes

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Purpl3haz3

Thank you already receiving useful information thanks to all the good people on this site.........bless

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Izb1

Hi Jimi, and welcome to the site. When first diagnosed , like you I knew nothing about bronchiectasis and luckily found this site which has given me so much information. After suffering a really bad cold a couple of years ago I ended up with a sinus infection that kept my chest infected for months and still have problems with my sinus's. Littlepom has given you alot of information which I found really helpful when joining. Make sure that you have a rescue pack of antibiotics and prednisolone which you can get from your gp, for any future infections. Make sure that you look after yourself, plenty of good home cooked food. I take vitamin d3, k2 mk7, magnesium and vitc. I get plenty of exercise walking to keep my lungs/heart working properly. When I have a problem with mucus I take mucodyne tablets that help to thin this out. I have Seretide inhaler that also helps with this. I dont need these too much when I am well some people need them everyday. I use nasal guard and use a hand gel when going out as I dont want another infection. Hope this helps a little. Irene x

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Purpl3haz3
Purpl3haz3
in reply to Izb1

Thank you it really helps a lot and a whole load of useful tips which I’m going to be eternally grateful for.........bless

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Littlepom

Just to let you know that oral steroids are not standard treatment for bronchiectasis on its own because they can mask the problem caused by a bronch exacerbation. People who have asthma or emphysema along side are prescribed them though and find them useful.

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Purpl3haz3

Thank you

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Pjmf
Pjmf
in reply to Littlepom

I was told steroids were contra indicated, particularly the inhaler they gave me before my bronch diagnosis. A grey area there.

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Littlepom
Littlepom
in reply to Pjmf

You are right. They are contra indicated in bronch itself. However life isn't simple and people with athma or emphysema benefit from them when they have a flare up of those conditions. Complicated !

I have never had oral steroids but I do have Fostair inhaler for the last ten years. My con is a top bronch expert. She laughs and says ' why do we treat you for asthma when you don't indicate it?' The steroid componant in the inhaler helps keep down inflammation for me and lessens exacerbations. We are all different and what suits one doesn't suit another. Steroid inhaler does not have the breathing effect on me that I read it does for those with asthma and emphy. It's oral steroids which can be problematical if given for bronch only. Unfortunately many GPs do not know this and give them because they wrongly treat bronch like copd.

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Tinker26

It’s normal to feel like that at first but soon you’ll learn how to live your life as normal as can be ,good luck and welcome xx

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Purpl3haz3

Thank you looking forward to normal take care......bless

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JasperDylan

Hi and welcome I have the same has you plus Emphysema all covered under the COPD illness

I would suggest you try and go on a pulmary Rehab course they are run over 6 weeks twice a weekly they will teach you everything about chest clearance and anything else you need to ask

Good luck .

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Purpl3haz3

Thank you very much and also good luck to yourself........bless

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dickinson1954

Hi and welcome.

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Purpl3haz3

Thank you........bless

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Dedalus

Hello and welcome Jimi.

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Purpl3haz3
Purpl3haz3
in reply to Dedalus

Thank you...... bless

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Bingo88

Welcome Purpl3haz3. Very helpful group. Sure someone who has your condition will answer any questions and put your mind at ease pal take care Brian

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Purpl3haz3
Purpl3haz3
in reply to Bingo88

Thank you take care yourself

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furelise

Hello Jimmi, welcome on this site. It is very reassuring that there are others out there, just like you, and suffering just like you. Hope you get the support and care you deserve.

I have a question for fellow sufferers out there: has anyone been referred to consultants in London? For me this would be the best in terms of access (if I can persuade my GP to seek an NHS appointment with a proper specialist).

Going to London would mean a short journey by train, then the tube!

So, if you know and can recommend anyone?

I do have the names of one or two consultants at Royal Brampton but still, recommendations are often best. Thank you all so much

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Purpl3haz3
Purpl3haz3
in reply to furelise

Thank you for the welcome although I’m not the one to ask about hospitals as I’m new to the illness

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Pjmf
Pjmf
in reply to furelise

Dr Leobinger at the Brompton. World expert on bronchiectasis.

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furelise
furelise
in reply to Pjmf

Thank you so much! That is the name I have earmarked. Have you ever had a consultation with him???

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Pjmf
Pjmf
in reply to furelise

Yes. I see him tomorrow, but I think he will sign me off back to my local hospital as I’m doing so well. I volunteered on one of the research projects at the Brompton so went 4 x a year for two years on that. It has finished now. I saw him separately though the research is under his remit, financed and a joint project with the EU. The researchers are worried about the future and even talked about having to move to Brussels. I so hope that doesn’t happen.

He comes across as a bit dry, but he is very sound. The physio at the Brompton told me to really push aerobic exercise and not to worry . I was afraid I was doing damage when getting out of breath, now I try and find that steep hill to walk up! I was also given the name of a private bronch specialist to go to, but don’t feel I need that now. I was very poorly a few years ago and the abs weren’t controlling the infections, now it’s not ruling my life any more. Fingers crossed.

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furelise
furelise
in reply to Pjmf

That's fantastic! I wish you well for a long and infection-free future.

Hope to soon meet this well-regarded researcher.

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Littlepom
Littlepom
in reply to Pjmf

He co wrote the latest bronch guidelines with my consultant who is at the QE in Birmingham.

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Pjmf
Pjmf
in reply to Littlepom

Interesting. I see him today. Where can you find those guidelines?

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Littlepom
Littlepom
in reply to Pjmf

You can google them. There is a small group of these experts at various centres around the country. They communicate regularly as they tend to sit on committees together and share information. My previous consultant, Robert Stockley, trained my con and was THE formost researcher in bringing bronch to the world and effecting the teaining of today’s experts.In 1986 he went to a conference in Las Vegas and taught the US that bronchiectasis existed as a condition by itself and was not simply ‘nasty cystic lungs’ as an American doctor had tried to tell me when I lived there in 1982. How we have come on. Of course, this is why I nag and nag that bronchs need bronch expert consultants and not general respiratory consultants. It is such a specialism.

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Durcot

Hi Jimi

Regardless of what site you should be on. We all care. I have sever COPD and sever ASTHMA. Regardless of what site your with friends and God loves you

What I can say about your illness is to read all you can about it and have questions to ask your doctor. Dont just sit back , be strong , be a survivor.

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Purpl3haz3
Purpl3haz3
in reply to Durcot

Thank you.......bless

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Blackcat99

Welcome to the forum, Jimi!

Like you (and like most of us here, I suspect) after initial diagnosis I felt totally adrift, quite panicky. It took me a couple of years to really get to grips with things, and to find my way onto this website/forum, a real godsend. Over the past year, 'though, I've felt so much better and more in control of my condition, have been getting out and doing stuff, and really enjoying life.

Make full use of this forum - lots of really fine folk on it, ready to offer you advice and support when you need it, even if it's just that you're just feeling a bit down.

One bit of advice - a lot of people recommend that you need to push to see a consultant who specialises in bronchiectasis. That is obviously best if you have access to one but, in many areas of the country (esp rural) there is no-one with this specialism, so you have to be prepared to do some homework and find out what it is that you need to be asking for.

Wishing you a much more positive year in 2020! xx

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Purpl3haz3

Thank you very kind words and some sage advice you’re so right quite scary felt very alone for a while now in contact with kind people like yourself and others on this site feel much more comfortable...........bless you all

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ssafa

Hi Jimi you will se from the responses you are indeed on the right site and there are many useful posts and information.

You are welcome to look at any of my posts. I do believe like many others that GP's don't always know much about COPD or Bronchiectasis. The experts are the ones in hospital who specialise in our problems.

The one thing I feel that is vey useful is exercise, do what you can even if its going for a walk as often as possible. Hospitals have rehab exercise sessions as part of the physio departments and you can be referred by either your GP or prescribing nurse practitioner.

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Purpl3haz3
Purpl3haz3
in reply to ssafa

Very true about doctors or mine at least but picked up many good tips from the good people on this site that I feel I at least now have a direction thank you.........bless

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