Introduction : Hi my name is Jimi I am...

19 days ago

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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wheezyof

19 days ago

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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Pjmf

19 days ago

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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Izb1

19 days ago

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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Littlepom

in reply to Pjmf

19 days ago

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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Pjmf

in reply to furelise

19 days ago

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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Littlepom

in reply to Pjmf

18 days ago

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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Blackcat99

18 days ago

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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