Just had the shock of my life - letter from Consultant following CT Scan diagnosed Mild emphysema and Mild cylindrical bronchiectasis.
I've been coughing for some time and just thought it was a chest infection. I've been on Antibiotics for 3 weeks now.
I did smoke but gave up 35 years ago. I now feel very upset and guilty that I may have brought this on myself. Especially as my daughter is only 26 and my granddaughter 2 yrs old.
I've been referred back to the GP who I don't have much faith in as she laughed at me the last couple of months when I kept asking her for tests. Ha ha you don't need that.
The Resp consultant has offered a routine referral for my chronic cough that I'm going to ask my GP to do.
Has anyone got any reassurance - I'm in shock and don't know what the future holds.
Thank you. So glad I found this forum.
Fi
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Greenfingers20
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It is always a shock initially but as time passes and you understand more you will realise there is a lot more living to do.
You have been diagnosed both in mild stage, a huge plus and managed well should not affect your life too much, although you will need to tweak your lifestyle a bit.
Good you have seen the respiratory consultants and you have a referral for your chronic cough.
The main thing with bronchiectasis from my own experience, is you need to drink plenty of water to help keep the mucus thin (prescribed carbocisteine also helps with this in addition to the water) If the mucus is sticky its more difficult to cough up but your cough reflex will still try to do this.
You might want to investigate through your consultant if there any online pulmonary rehabilitation courses available as this could help you understand and manage things more easily taking some of the stress and anxiety away.
Please check out the other Bronchiectasis posts of today. Referring to the Active Cycle of Breathing technique (video)
BLF pages list of lung issues may be of interest: (keep in mind your diagnosis is MILD)
Welcome Fi, Bkin has explained Clearly, everything you need to Know. You will find lots of Info on Here with BLF & Many Many of our Forum members. Stay calm Hun. it is a shock at the Beginning. Learn all you can, take one Day at a time. Best Of Luck. Stay safe. Love. C. XXX
Please don't feel guilty about the smoking. Bronchiectasis can just be caused by bad chest infections that were not dealt with properly. Before my diagnosis I had 2-3 months of On going infections that didn't respond to Antibiotics and only after CT scan it showed the damage that had been done
Now with proper treatment it's all under control. As one of our other members says ( and she has had B'ect since childhood & is 70 now ) you need to insist on a B'ect Consultant. Respiratory ones do not know enough and the specialist treatment is key. All the best to you
I am sure that's how i got bronchiectas too. I waa so ill back in 2017 with constant chest infections and a bout of pneumonia. Ive been really well since my last infection in February 2019. This may be a coincidence but it was at this time that I replaced my gas hob with an electric one
I've been coughing since March and thought it was reflux - I have a hiatus hernia.
The GP did listen to my chest but said she couldn't hear anything, she is quite dismissive attitude. I've even had 2 Covid tests over the past couple of months as I felt so fatigued and my chest hurt.
Your situation and mine have some striking similarities, I was coughing for weeks and kept pressing my GP surgery so they sent me for a chest x-ray and 2 CT scans. I was told the result was I had scarring from old chest infections but not to worry, I pressed them as I wanted an explanation for why I was still coughing so they referred me to Chest Clinic at the hospital....
When I got to chest clinic at the hospital a few weeks ago the consultant firstly congratulated me for quitting smoking 20 years ago then launched straight in telling me I had mild emphysema and mild bronchiectasis but did not explain much about either condition other than to describe my bronchial tubes as looking like varicose veins on the scan.
To be honest I was in total shock as the GP had indicated there was nothing of concern. I struggled to take anything in and sat there like a nodding dog!
The consultant prescribed a steroid inhaler which came with a blue card that panicked me but after a delay so I could seek more info from the GP I did start taking them. I have now had a lung function test too and my follow up telephone appt with the consultant is on the 20th November .... I'll be more prepared this time!
From everything I have read here and elsewhere the conditions can be managed but when you are told you have them out of the blue it is natural to panic - I know I did!
I also think forwarded is forearmed, before I did not know about my lung problem I didn't worry and some things about my lifestyle are no so healthy, for instance I am very sedentary, but, now I know I have set about finding out what I can do and reading some of the posts on here has been really helpful and informative.
Best wishes to you and I hope that when the shock subsidies a little you will find a way forward that works for you and look to the future more positively.
I think the jury is out on the causes of bronchiectasis. Some think it's related to having whooping cough as a child.
Not unusual to find one's GP does not take one's cough and chest infections seriously. I had the same problem and it was only when my daughter who is a hospital doctor suggested I might have bronchiectasis that I was energised to get a referral to the cough clinic from where a CT scan was recommended to confirm bronchiectasis. My GP was still reluctant to organise this but thankfully I stood my ground and now attend the local specialist unit.
You can live with this disease but you need the back-up. It doesn't impinge too much on my life and so long as I have my supply of back-up antibiotics I feel relatively calm.
Thanks Stones. Yes I looked up possible causes. I had Measles as a child and have a scar on my heart so easily could be bronch as well. My Dad also smoked roll ups then a pipe when I was growing up. My sister has chronic asthma and severe allergies.
I need to get my GP to refer me to the cough clinic at the hospital - suggested in the letter from the Consultant. I hope that will give me the back up you have. Currently the only help has been a retired locum helping at the surgery - he knows his stuff but is only there occasionally.
So many thanks for your advice, you're all being amazing.
That's interesting as I did have whooping cough as a child but so did lots of children before the vaccine was around. You would think as a result more would have bronchiectasis but it doesn't seem to be a common disease
Thanks Honey. Yes it describes my experience! I'm pretty cross that the bronchiectasis may have been due to GP not referring me/not believing what I was telling her.
The GP locum has given me a week's antibiotics. I'm going to speak to another GP onMonday to discuss the list of diagnoses. I have healing ribs too from a fall when they said not to worry you're fine! That was a surprise - I thought it was pretty painful when I was coughing!
Do keep in touch it's really helpful. I'd like to know what to ask when I go to the Cough clinic - may be some weeks away.
There seem to be a lot of incompetent GPs about. Try to educate yours if you can't jump ship. Hubby and I were lucky. After years of being messed about we were able to escape to a decent surgery.
My GP retired in March-she was brilliant. Its gone downhill since then. One won't listen and the other has his trainers on ready to run before he's finished the appt!
Its not a good time to swap in Lockdown but will seek to once we're out of it.
Meanwhile I have to find energy to educate as you say.
Think it will be better going to the cough clinic at the hospital.
I hear your frustration with the GP surgery, one thing I have learnt is that nothing is a problem for them unless it is a problem for you and you are saying so - which usually means you have to be persistent in advocating for yourself, which it sounds as if you have been!
Like you I wonder what has brought the bronchiectasis on, or at least brought it to attention now. I had taken on some house-sitting in the country, the place was in a very rural location, old and had no central heating, interestingly, I now know other people have had a bad reaction and got chesty there so I would really like to know whether aspergillosis mould had a part to play for me.
Anyway, I am now back at my own house in a town and have been thoroughly hoovering and dusting today wearing a specialist mask I bought from Amazon! I don't know if it is an over-reaction but at the moment I wake up with a horribly tight chest every morning so it feels like the right thing for me to be especially careful.
Broadly, the questions I plan to ask at my next Chest Clinic appointment are:
-what was the outcome of lung function tests? I am told this will either rule out or confirm asthma and COPD (the emphysema and bronchiectsis having been already diagnosed the CT scan)
- should I continue with the steroid inhaler which the patient information leaflet says is for asthma, and if so for how long?
- could aspergillosis be the cause of the current flare up and can I have the skin prick test and blood test?
-what is the combined treatment plan for the emphysema and bronchiectasis (and anything else lung related I may have)
- can I be referred for physiotherapy and/or pulmonary rehabilitation?
This is all still fairly new to me so if anybody here with more experience has any thoughts on what to ask it would be very good to hear more as it could really help us out.
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