so much activity!

[Guest guest]

Hello everyone

I've not posted for a while. So much activity in the group recently - I'm glad

to see you are all 'well'!!

Welcome to the new members and hugs to those who are poorly - Joy in particular.

I don't know if my story would be be of any help to those new members but here

goes.

I was diagnosed approx 6 years ago - I am now 54 and live in the UK. I went

through a long period of constant coughing and generally being very unwell

before finally being diagnosed. My GP tried everything over a long period

including chest x-rays and all the inhalers before referring me on to a

consultant by which time I was in a pretty sorry state and could hardly breathe

my oxygen levels were very low and it looked like oxygen was the next step for

me. I was very lucky though as the consultant I got was a renowned expert on

bronchi both nationally and internationally. He made a diagnosis on examination

alone within 10 minutes of first seeing me and this diagnosis was confirmed

within days by a bronchoscopy. I have never had any scans they were

unnecessary.

Following the 'clean out' via the bronchoscopy I was immediately started on anti

biotics specific to the infection a few days later began a rigorous course of

physio and breathing re-training. It took several months and was to prove very

important to my management of the bronchi.

The physio I had was part of the team that worked closely with the consultant

and was present in theatre during the bronchoscopy so saw for herself what was

going on in my lungs.

I & my husband were taught the usual self management techniques of Percussion

etc. I was - very importantly - taught how to breathe properly too. My

breathing was very shallow, oxygen levels very low, I was overweight and have a

bad back. The breathing retraining involved unlearning the bad habits I had

developed due to the coughing etc resulting in the shallow breathing and low

oxygen levels.

I learnt to breathe in different ways, from my diaphragm, filling my lungs in

different areas etc etc. I did (and still do) breathing exercises to a CD. I

was given a book by Dinah Bradley to read and work from - It's about over

breathing and hyperventilation syndrome. She is a New Zealander but respected

world wide and her books are available on Amazon.

The whole regime enable me to get a handle on the bronch. I did not need to go

onto oxygen and as long as I stick to the regime I can cope. I have had to have

a couple of 'retraining' sessions with the physio when I have let things slip.

I don't use any inhalers (I do keep a ventiolin for emergencies but not used it

for a long time). I hardly cough at all now having been taught to control it. I

use an acapella as I find it easier on the body than the percussion. I have a

flutter too but can't get on with it. I also have a hand held massager that

vibrates, bought it for my bad back but it works well for the bronch. I have

managed to keep infection free for over 12 months now and so have not had to

take any antibiotics in that time. I take vitamins, eat well and keep away from

infections as far as I can. I work and lead a good life walking with my dog,

gardening etc. I do get days when I'm not so good but I lay down and 'breath' a

lot and that helps.

I suffer very badly with allergies and currently am very debilitated by hay

fever. I recently bough a salt pipe and it seems to be very helpful for the

allergies and the respiratory system generally. My breathing is much easier and

my lungs feel much clearer after 10 minutes of breathing through the salt pipe.

As we know we are all different and what works for one doesn't necessarily work

for another but sharing all our knowledge is a great thing.

Thanks to you all. Keep well.

Lizx

[Guest guest]

Hi Liz

yep me too no drugs at all now. I have the Dinah Bradley books and letters from her from days when i had agoraphobia and hyperventilation syndrome. Learning to deep breather certainly helped me. Staying away from people with colds etc too

cheers Lee

To: bronchiectasis Sent: Wed, 26 May, 2010 6:36:44 PMSubject: so much activity!

Hello everyoneI've not posted for a while. So much activity in the group recently - I'm glad to see you are all 'well'!!Welcome to the new members and hugs to those who are poorly - Joy in particular.I don't know if my story would be be of any help to those new members but here goes.I was diagnosed approx 6 years ago - I am now 54 and live in the UK. I went through a long period of constant coughing and generally being very unwell before finally being diagnosed. My GP tried everything over a long period including chest x-rays and all the inhalers before referring me on to a consultant by which time I was in a pretty sorry state and could hardly breathe my oxygen levels were very low and it looked like oxygen was the next step for me. I was very lucky though as the consultant I got was a renowned expert on bronchi both nationally and internationally. He made a diagnosis on examination alone within 10 minutes of first

seeing me and this diagnosis was confirmed within days by a bronchoscopy. I have never had any scans they were unnecessary. Following the 'clean out' via the bronchoscopy I was immediately started on anti biotics specific to the infection a few days later began a rigorous course of physio and breathing re-training. It took several months and was to prove very important to my management of the bronchi.The physio I had was part of the team that worked closely with the consultant and was present in theatre during the bronchoscopy so saw for herself what was going on in my lungs. I & my husband were taught the usual self management techniques of Percussion etc. I was - very importantly - taught how to breathe properly too. My breathing was very shallow, oxygen levels very low, I was overweight and have a bad back. The breathing retraining involved unlearning the bad habits I had developed due to the coughing etc resulting in the

shallow breathing and low oxygen levels.I learnt to breathe in different ways, from my diaphragm, filling my lungs in different areas etc etc. I did (and still do) breathing exercises to a CD. I was given a book by Dinah Bradley to read and work from - It's about over breathing and hyperventilation syndrome. She is a New Zealander but respected world wide and her books are available on Amazon.The whole regime enable me to get a handle on the bronch. I did not need to go onto oxygen and as long as I stick to the regime I can cope. I have had to have a couple of 'retraining' sessions with the physio when I have let things slip.I don't use any inhalers (I do keep a ventiolin for emergencies but not used it for a long time). I hardly cough at all now having been taught to control it. I use an acapella as I find it easier on the body than the percussion. I have a flutter too but can't get on with it. I also have a hand held massager

that vibrates, bought it for my bad back but it works well for the bronch. I have managed to keep infection free for over 12 months now and so have not had to take any antibiotics in that time. I take vitamins, eat well and keep away from infections as far as I can. I work and lead a good life walking with my dog, gardening etc. I do get days when I'm not so good but I lay down and 'breath' a lot and that helps.I suffer very badly with allergies and currently am very debilitated by hay fever. I recently bough a salt pipe and it seems to be very helpful for the allergies and the respiratory system generally. My breathing is much easier and my lungs feel much clearer after 10 minutes of breathing through the salt pipe.As we know we are all different and what works for one doesn't necessarily work for another but sharing all our knowledge is a great thing.Thanks to you all. Keep

well.Lizx