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Bronchiectasis Foundation

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Hi my name is Maggie just found the site after almost a year since being diagnosed with Bronchiectasis and Asthma. I have felt so confused because in my area there doesn't seem to be any back-up although a year down the line I finally have an appointment with Respiratory physiotherapy! However ny Consultant appointment has been put back to June next year.I haven't seen a yone since May this year. Fellow sufferers I would be so grateful for any tips on how to keep myself as well as is possible. Thank you!

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Hi Maugie

My mum has bronchi too, and we’ve learnt that services are really hit and miss. The more you know about how to look after yourself, the better.

We’ve found with mum that regular physio (we learnt techniques to do ourselves- YouTube has plenty of videos) and keeping an eye on sputum colour, gives any early indication of infection.

We also have labelled sputum tubes at home (from respiratory nurse) where I can take a sample straight to lab in our local hospital, if mum thinks she might be coming down with something.

We try to make sure we have a general antibiotic at home, so mum can start straight away if feeling unwell.

Make sure you have your flu jab, and try to limit your exposure to bugs. Not easy at this time of year😖 but effective hand washing and avoiding heavily populated areas (indoor) can all help.

We’ve definitely learned (the hard way) that you have to look after yourself, because our NHS aren’t very well equipped to look after bronchiectasis!

I hope this helps,

Take care

Kim

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Hi Kim send my regards to your Mum and I thank you for these important tips on how to keep myself as well as I can - it was a struggle when we had the spell of hot weather too and keeping well now we've got to the Flu season will be interesting Had my Flu Jab though and am keeping everything crossed! Staying as positive as I can Regards to you both

Maugie

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Hi Kim, please can I ask when you take your sample direct to the hospital, as well as the labelled pot do you not need a form to go with it? And also who do you then ring for the result? Hope you don’t mind me asking, cutting out the middle man (dr) does seem to be a quicker way x

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Hi Dawn.

I’ve managed to get a bit of a system going with our community respiration team. They’re linked to the respiratory consultant and they have two nurses and a physio on their team. I asked them if they could label up a few tubes with forms, so I’ve got some here when we need it.

I just add the date when I’m taking it down, and take it direct to the lab. It’s much quicker than waiting for the G.P.

I ring the resp nurse then to say I’ve put one in and to keep an eye out for results . Takes around 4/5 days.

Just wish I could work out a quicker system for getting bloods done 😡

Hope that helps!

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Hi Maugie I was diagnosed in 2017 after years of constant chest infections and having pneumonia twice. I have also been told I am resistant to amoxicillin. I went to pulmonary therapy and it did help my breathlessness and made me feel a bit better. It’s really something you need to keep up but not always possible with infections. I have to see the asthma nurse twice a year or more if I am unwell that helps. The Consultant normally twice a year. I have learned a lot from this site and now I don’t feel alone. The support from everyone on here and the British lung foundation site is fantastic. I read everything and anything about Bronchiectasis which helps. Generally I keep away from anyone who is ill and wrap up warm in the winter. I hope this helps. X

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Sorry for the delay in replying I do appreciate your response and found it very helpful. I have found that we have to do as much as we can for our own well being as the NHS seems lacking in Bronchi expertise. My Local Authority is 2 Consultants down Haven't seen one since May 2018 and next apt is June 2019. I'm trying to avoid picking up infection but its difficult at this time of year isn't it? All the best to you Patsy164 Keep our fingers crossed eh! X

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I’m afraid this is the NHS for you. If you need to see the consultant before June I would call their secretary to bring forward your appointment.

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