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Bronchiectasis -very confused

Daffodil51 profile image
14 Replies

Can anyone help with this? I saw my consultant last week. I've been well for approx 12weeks now. My peak flow has gone up steadily from 280-400/450. Consultant said that bronchiectasis can disappear! That piece of info completely contradicts everything I've read on BLF site and what I've been told by others with same condition. Whilst it was very encouraging, it's also terribly confusing. My initial diagnosis was copd -moderate and bronchiectasis -minor. I've done and continue to do everything I've been advised to do. Any suggestions?

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Daffodil51 profile image
Daffodil51
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14 Replies
Sohara profile image
Sohara

Not really but it does sound good news for you....so don't worry

(wish it was me they said that to :) :) )

knitter profile image
knitter

Fantastic news, how did you manage to increase your peak flow?

Congratulations on doing so well.

Daffodil51 profile image
Daffodil51 in reply to knitter

Hi Knitter. I've had an increasing peak flow since March. I've followed every bit of advice given from this forum and BLF nurse-healthy diet, vitamins, manuka honey 25+ , rest and probably biggest contributor is exercise 3 days of either swimming or exercise bike then a day off and back to 3 days exercise again.

mustcarryon profile image
mustcarryon

Great news. However, if you feel confused you can always ask the blf nurse, that may put your mind at rest.

don't think you have a correct diagnosis of bronchiectasis. The damage simply cannot go away. Good news that you are feeling well and fantastic that your peak flow is so high.

james1980 profile image
james1980 in reply to

Actually the good news is that it CAN disappear (and did so in my case). Doctors are seeing it happen more frequently nowadays. Some good info here from the NHS -> newcastle-hospitals.org.uk/...

in reply to james1980

I don't think it was bronchiectasis in the first place. I have had 63 years of everything contained in that information. The initial lung damage just does not go away. If you better from whatever you had, I am very happy for you though

mrsmummy profile image
mrsmummy in reply to

The link refers to Bronch in children.

in reply to mrsmummy

yes, which of course I have had since I was diagnosed in 1953 at the age of three. It didn't go away.

Nikkers profile image
Nikkers

Sorry Daffodil, but your consultant is talking rubbish! Bronchiectasis, cannot "disappear", because it causes irreparable damage to the lungs. I can only imagine that if you had this at all, it was so minor that it has not made that much difference to your daily functions. However, unless you have that small part of the infected lung removed, it will always be there - but manageable. It can get worse and infect larger areas of your lungs if you abuse it e.g. smoking etc. When I was a child I had pneumonia several times and this is what caused the damage initially, and consequently, bronchiectasis to my right lung. As a teenager not wanting to be the odd one out, I smoked. The impact of my actions did not show for many years - apart from the "smoker's cough" But believe me, the disease was always there and without my knowledge continued to spread to a larger area of my lung - and later still, both lungs. I stopped smoking many years ago, but the damage was already done and starting to show results. You cannot replace damaged lung area - it's not like the liver which can regenerate itself to a degree. If you've been diagnosed with COPD (chronic obstructive pulmonary disease) this includes bronchiectasis not "plus" it. I can only think that your consultant saw something else as well- maybe mild emphysema or asthma? Get a second opinion if you're concerned. We have the benefit in this country of free treatment and you are entitled to it. Don't know if this helps, but "trust me, I'm a Doctor!" :-)

Daffodil51 profile image
Daffodil51 in reply to Nikkers

Hi Nikkers thanks for reply. On my care plan it says copd/bronchiectasis. This was diagnosed after many tests and 2 ct scans. All along though the doctors and nurses I've seen have said I'm not 'typical' wonder if there's a look! The consultant said damage caused by pneumonia which hospitalised me for a week last year then continuous chest infection until February when I had type 2 respiratory failure after picking up a nasty virus in Cyprus. I ended up in intensive care and then all the test began. I also have recurring sinusitis which I'm told goes with the territory. Think ill get in touch with BLF as they're also really helpful. Your response was helpful too!

Claudine profile image
Claudine

Agree bronchiectasis cannot disappear (unless you have a lung removed of course)!

A CT scan will prove one way or the other - it's quite clear on the pictures. I have always been told that bronchiectasis is not caused by smoking but I think it's possible to have bronch and COPD as well.

Nikkers profile image
Nikkers

Hi Daffodil

Bronchiectasis is caused by damage in part of a lung which has usually occurred through repeated illness i.e; pneumonia, reoccurring bronchitis etc., I'll try to explain this as simple as possible. a healthy lung will allow you to expel phlegm/mucous when you cough. A lung that has been damaged from illness looses it's "elasticity", so when you cough, the mucous does not expel readily and therefore putrefies. Over time, this is what leads to Bronchiectasis. COPD is not an illness in itself, it's the collective term for a number of pulmonary diseases. Bronchiectasis may not be initially caused by smoking ( as Claudine said) but if you think that there is no added damage to what are already damaged lungs, by smoking, you are fooling yourself! This is why most people who have already been diagnosed with bronchiectasis, who then take up smoking, are later also reported to also have emphysema. Sinusitis is also part of the problem I'm afraid to say. I had 3 operations on my sinuses as a child, but I would not recommend it to anyone. Doesn't appear to have helped much at all.

Daffodil51 profile image
Daffodil51

Thanks for your 'simple' explanation Nikkers. I am not a smoker any more I gave up last year when I had pneumonia. Think you might be confusing me with someone else :)

I was really well when I saw consultant I think after speaking to BLF I'm convinced he meant symptoms could disappear if well managed. Ironically, I'm contemplating starting rescue meds as I've been really unwell since Sunday! Just keeping an eye on oeak flow as doctor has already put me antibiotics.

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