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Bronchiectasis Foundation

A big Hello

Hi folks

I’m Newly diagnosed but feel it’s been undiagnosed for a few years.

I’m asthmatic all my life and Prof McNee diagnosed Bronchiectisis last summer.

I’ve had no new medication to help

Was asked to attend physio in hospital but they’ve cancelled 3 times due to staff shortages. Just feeling in my own with this condition. I’m a busy mum running our own business and putting lots into community work. Now it’s me that needs a little help feel nothing is available.

I’ve recently started Salt caves but had to stop as so unwell

With infection 10 days with02 at 89-91 normally 97.

Doxycycline prescribed and usual

Steroids but docs gPs have not even followed up . Just a bit fed up and hoping this site can bring some positivity back to me as getting to know this condition. Meds

Daily Seretide 500 & Salbutamol Under active Thyroid do 250mg Thyroxine & Ranitidine

What else should I be asking for to help this horrible condition.

Hope someone out there is listening :)

1 Reply
oldestnewest

Hi and yes someone is listening. I am no longer part of this group but as you hadn't had a reply I am following temporarily in order to reply to you.

I have had bronchiectasis since i was a baby at the start of the NHS and had asthma and other health issues more recently.

I am so sorry you are one of the many people who seem to be short changed when it comes to bronchiectasis being undiagnosed for some time but we are where we are and I hope things will start to improve for you.

I am pleased to hear the Prof who you are seeing has referred you to a respiratory physio. Just wondering what other things he has referred you for, as I have just checked online and he has a special interest in COPD. If it were me and I lived in Aberdeen then I would want to see a respiratory consultant with a special interest in cf/bronchiectasis. Here is a link for you

ed.ac.uk/pathway-medicine/o...

You might find this helpful. In this form it is a soft launch and is something I had a small involvement in as part of the patient advisory group. It has basic information re NCFBE but it also has clinician to clinician talks. Dip in as you please and take from it what you need.

europeanlunginfo.org/bronch...

Lots for the time being.

Love cx

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