How old were you when diagnosed with Bronciectasis?

[Fiona1990]

I was diagnosed at 27 and am 29 now. Worries me a lot when everyone says my lungs looks like someone much older. Has anyone here lived with this for a long time?

[Hidden]

I am 69. I was diagnosed at 3 years old. I have lived with it, managed it, had and still have a very full life. Stop worrying and shake it by the neck. You need to be in control, not the condition.

It is very important that you have a bronch specialist consultant who will tell your GP which abs to give you and decide which delivery method you need. For yourself you need to get into a routine of lung emptying to stop bugs growing and plenty of exercise. This way it just becomes part of your daily life.

[2greys]

I will quickly add that lung age is designed to make smokers quit I think. My lung age last April was 162 years and even at 69 years old I still work full time.

[Hidden]

Whoever is saying your lungs look older than your age does not know what they are looking at. Lung age is not a term ever used by those who know about bronchiectasis. We are all different. Bronchiectasis is damage to the lungs and airways which results in floppiness and pockets where mucus collects. There are many causes of this, pneumonias, many chest infections, measles, whooping cough, rheumatoid arthritis and in the case of cystic fibrosis, a genetic mutation. This is not something that would normally be caused simply by ageing. Ignore them or educate them.

[cofdrop-UK]

Hi Fiona

Agree with Littlepom stop worrying and make sure you have a res con who has a special inerest in cf/non cf bronchiectasis and make sure you do your lung clearance daily.

I think 2greys is right with regard to lung age and is in my opinion cruel and woe betide anyone who tried to explain my predicted FEV 1 as a lung age.

To answer your question I was diagnosed with bronchiectasis at the age of 5 months old following doube pneumonia and whooping cough at the start of the NHS and I am now 71. I was also in hosp with measles aged 19, so a double whammy, There was little other than physio, physio and more physio and penicillin injections in the 50s+. There has been an awakening in the condition with interest in, research on the horizon and I would hope more effective treatments in your lifetime.

Here is a link which I was lucky enough to be involved with as one of the patient group.

europeanlunginfo.org/bronch...

Love cx

[Hidden in reply to cofdrop-UK]

Thank you for the link Cof, I've added it to my Bronch library. 😘

[cofdrop-UK in reply to Hidden]

You’re welcome Poems 🙂

Cx

[Hidden]

Fiona, you have been given superb advice from some of our most expert Bronch experts. I also have Bronch but I'm nowhere near as knowledgeable as any of these wonderful advocates. As far as I'm concerned you would do well to take notice of every word they say.

[watergazer]

Yes Fiona I hope you are feeling more positive and encouraged by the above comments by our bronch experts.

[Dibola04]

Hi Fiona, there is a wealth of experience on this forum but I am experiencing the difficulties of managing Bronchiectasis without a specialist consultant so would prioritise finding a good one if possible! Best wishes.

[cofdrop-UK in reply to Dibola04]

Why are you having difficulty in finding a proactive consultant Dibola?

Cx

[Dibola04 in reply to cofdrop-UK]

Just don’t have one and my GP is struggling to get advice to help manage a deterioration in symptoms, very frustrating! x

[cofdrop-UK in reply to Dibola04]

Have you looked online at a large city hospital you have access to? I don’t get why your GP can’t find one. You really should be under the care of a consultant with special interest in bronch. Feel free to PM - I will help if I can.

Cx

[Dibola04 in reply to cofdrop-UK]

Thank you cofdrop, I was seen at Brompton for a few months but this was respiratory & asthma clinic I think. Had a stable few weeks and was discharged but things have really deteriorated badly and almost house bound currently. I have good chest clearance regime but repeat infections are not clearing up like they used to.

[cofdrop-UK in reply to Dibola04]

rbht.nhs.uk/specialists?sea...

There are 2 who specialise in bronchiectasis there who will also have expertise in asthma.

Contact them or their secretary and explain you see they specialise in your condition and ask if they would see you in clinic. When they say yes, then tell your GP and ask to be referred.

Just noticed this

rbht.nhs.uk/for-healthcare-...

Good luck

Cx

[Dibola04 in reply to cofdrop-UK]

Thank you so much I will contact them in the morning x

[Fiona1990]

Thank you all so so much. Your responses have been so encouraging and positive.

I had TB in the past which went undiagnosed and untreated for a while and this is the cause of the bronchiectasis. Haven’t had much care since diagnosis other than the gp prescribing antibiotics repeatedly. Beginning to learn that there is so much more to this. Have got an appointment to see specialist respiratory consult next month so hopefully after that I will feel more in control.

Thank you all again

I’m happy to have found such a lovely community 😘

[skipwork]

I have had Bronchiectasis for 20 years and have done postural drainage 3 times a day for 25-30 minutes each time. I lie on a sloping bed. I use a brown inhaler occasionally. I have an infection about once a year and that is now. It is playing havoc. I am on anti-biotics for 10 days.

[Bunny_Ears in reply to skipwork]

Which brown inhaler do you use, may I ask?

[Bunny_Ears]

I was diagnosed when I was 21, nearly 20 years ago. I never really had symptoms until I caught flu 6 years ago (and that was the first time I had had flu vaccine) - been having productive cough ever since, though that has kind of lessened and is now replaced by frequent shortness of breath for the past 7 months.