Bronchiectasis : Hi I just been... - British Lung Foun...

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Bronchiectasis

LornaCord
LornaCord

Hi I just been diagnosed with Bronchiectasis. For years ive been in and out of hospital with pneumonia. I get really breathless. Every time I see the doctor I have to explain that I suffer with pneumonia, but it's like they don't believe me and send me home saying its a chest infection. Then a week later I end up in A and E and admitted in. I'm so fed up with it all. I was told years ago by a lung specialist that only part of my right lung works due to thickening and scaring. When I was younger I ended up in hospital with pneumonia and pleurisy. Had to have a drainage and was kept in for over two months. I see a consultant in March. I really want to help myself. Could anyone give me some tips on how to help with the wheezing and breathlessness. I would be so grateful. Lorna x

16 Replies
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There are several members here with Bronchiectasis who will probably be along soon to give you the BEST advice ever.

Meanwhile you can visit this website and download their Bronchiectasis booklet.

chss.org.uk/chest-informati...

Thank you so much x

Hi Lorna,

I am one of the lifelong bronchs on this site who has led and still lives a full life with the condition.

You sound like a typical bronch patient who has been neglected and misdiagnosed for years. Recurrent pneumonia is often what leads to the damage which results in it.

Your doctors should be struck off - all of them!

The good news is that you can feel a lot better and lead a much better life than you do now.

BUT

the following is crucially important.

I don’t know how you have been diagnosed and by whom but it is absolutely necessary that you are diagnosed by ct scan and by a bronchiectasis specialist.

General respiratory consultants do not know enough about bronch or have sufficient experience to oversee your ongoing care or tell your GP which treatments to give you. GPs know nothing about it. Your experience bears this out.

Check whether the consultant you are due to see is a bronch specialist. If not, look on the site of your nearest large teaching hospital and find one. Take the name to your GP and absolutely insist that your referral is changed to them. The GP has no right to refuse and given that they have neglected their duty of care towards you and obviously do not know what they are looking at they are on a sticky wicket.

Once you are with the bronch specialist you will have access to their physio to help you to learn to empty your lungs every day in order to get rid of the mucus which builds up in there. This is where the bugs grow that lead to what are called exacerbations, which if left, can result in pneumonia.

They will also decide which antibiotics and by which delivery system you need.

It is a matter of self management backed up with drug therapy.

There is much more that I could tell you but think that I have thrown enough at you for now. Hopefully some of the other bronch busters will be along shortly to support you. We are always happy to help.

I’m afraid that we have to be very very pro active in our own interests and vociferous in sourcing the correct medical support ant treatment

Good luck

LornaCord
LornaCord
in reply to Littlepom

Hello littlepom Thanks so much for getting back to me. Just reading your message has made me feel so much better 😊I had a ct scan for Cancer and was given the all clear. Was so worried as Just lost my lovely dad to lung cancer. I also had one year's ago for lung cancer in Derby and was told then that my Gp would have to give me antibiotics at the first sign of a chest infection. I live in Burton on trent. I tried telling the doctors at my surgery what I was told. But they never seemed to be interested. So I gave up. My last visit to the doctors was terrible I felt so ill and my cough was really bad l tried telling him to look at my history of pneumonia. But he just told me to go home and rest refused to give me antibiotics. Then a week later was in hospital with pneumonia. The consultant I'm seeing is in Burton. Think I will ask to be referred to Derby. Will let you know of outcome. Thanks again. Hope you have a lovely day xxx

Littlepom
Littlepom
in reply to LornaCord

Good for you, time to get assertive. Do look for for the bronch consultant on the Derby website so that you can go to your GP armed with a name. Then when it is all set up, change your GP. They are useless and criminally neglectful. You should have been referred the first time you had pneumonia.

Would it be possible for you to travel to Nottingham Lorna? My consultant is based at the Nottingham City Hospital. She runs a Cystic Fibrosis unit there so knows a lot about Bronch. Her name is Dr Jane Dewar. I can recommend her. XX

I've just checked, she's still there. :-)

It’s very interesting to read your reply Littlepom. I have bronchiolitis and lupus and my respiratory consultant suggested that I may have ‘a bit of bronchiectasis’ but that my treatment wouldn’t change anyway so not to worry. I had ct scans in 2011 and 12 and they don’t want to do another because of the radiation. Your advice is really informative

Thank you for your reply. I don’t know anything about bronchiolitis but I do believe that lupus can result in that condition and also sometimes bronchiectasis. I know a lady who has both and she is going strong at 88!

Stay well.

R1100S1
R1100S1
in reply to Littlepom

Agree we have to be assertive, after years with Asthma diagnosis I was eventually diagnosed by specialist after CT scans etc as a bronchiectasis patient

Have had physio etc as a bronchiectasis patient- yesterday went in for my annual chest review at surgery- all the”specialist “ nurse talked about was my COPD

Really winds me up

Littlepom
Littlepom
in reply to R1100S1

I hope that you see your bronch specialist at least every six months. If not, call their secretary and get booked in. Otherwise you are going to slip back under the non care of your surgery. With a specialist nurse who doesn’t know the difference between copd and bronch and GPs whom I suspect are as ignorant about it as most others you could really be in trouble if the bronch decides to play up.

R1100S1
R1100S1
in reply to Littlepom

Strange thing is it’s been recognised by rest of medical professionals I encounter

In November I had to undergo a Whipple procedure (6 hour plus operation) for what turned out to be adenocarcinoma of my ampulla. I was allocated a consultant anaesthetist and was specially prepared for before operation and was provided with the care of a chest physiotherapist to help recovery.

My discharge notes look like a Tolstoy novel- perhaps to hard to read. !!!

Once finished with chemotherapy and oncologist I plan to let’s say- raise awkward questions about the care. Meanwhile confident the team at hospital are really looking after me.

X

Littlepom
Littlepom
in reply to R1100S1

Thank goodness that the experts caring for your cancer are so good.I hope things go well.

R1100S1
R1100S1
in reply to Littlepom

It won’t be for lack of a fight ❤️

Put Silversol in a nebulizer and use 3 times per day. Kills all germs/infections, etc.

You say "Could anyone give me some tips on how to help with the wheezing and breathlessness. I would be so grateful. Lorna x"

I have traction bronchiectasis and I have to cough up the phlegm from my lungs every day. The following may help.

I have a lung condition (sarcoidosis) and produce a lot of phlegm every day. I wonder if the following would help you. To clear my lungs of phlegm every morning and before bed I do Active Cycle of Breathing technique (ACBT) - also known as huffing - which was taught to me by a physiotherapist to cough it up and then I don't cough during the day or when I lie down. If I don't do ACBT at nighttime my lungs "rattle" and can't lie down.

There is lots on the internet, especially Youtube, teaching Active Cycle of Breathing Technique (ACBT). I was taught by a physiotherapist to do it lying down on each side but it can be done sitting up.

Also you could ask to see a hospital physiotherapist who could assess you to see if you would be suitable for a nebuliser. You have to be tested to see if you are suitable. They are not very expensive to buy. After seeing a physiotherapist, I am prescribed individual ampoules containing 7% isotonic salt solution which I put in the nebuliser and which produce ‘steam’ to loosen the mucus and make it easier to cough up.

Or you could put your head over a bowl of very hot water with a towel over your head to loosen the mucus which I used to do before I had my nebuliser. I also have a Flutter device which I bought which helps if the phlegm occasionally gets stuck after I have done my ACBT (Look on the internet to explain what a Flutter is). There is also a device called an acapella which is similar. There is also an Aerosure Medic electric device which is similar, but costs a lot of money.

I never go anywhere without a packet of Fisherman's Friend (includes menthol and eucalyptus), as if I do feel the urge to cough I suck one (a very strong taste so takes some getting used to) and the urge usually disappears.

One last thing. My phlegm is white, but I have been told that if it goes yellow or green that may mean I have an infection and I should ask my doctor's receptionist for a little pot, cough in to it (in private!), and the doctor will send it to the local hospital for analysis to know which is the best antibiotic to fight it.

I am also on Apixaban to thin my blood as a CT scan with contrast showed I had had blood clots in my lungs in the past.

I hope this all helps.

@LornaCord hope you get it sorted. I was treated for 18 months for ‘asthma’. Hardly any sleep for that 18months. Still working. Really ill. Admitted to hospital. Fortunate series of events, I got a Pulmonary Consultant who knew her stuff. She stood by my bed and categorically stated ‘You DO NOT have asthma. You NEVER HAD asthma. You HAVE bronchiectasis.’ She changed my treatment plan and I improved massively. This is my first hospitalisation in 4 years. (I’m writing from hospital bed). Yet ... when I attend GP for routine blood Appt etc., they see on the screen ‘Asthma’ inspire of Consultant writing to them telling them to correct their records. You have to be your own advocate. Gather the advice together on here and use it to your advantage. All the best 😀

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