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Bronchiectasis/ Atelectasis

Otto11 profile image
31 Replies

Hi everyone I hope you are all ok after the heatwave.

Just a quick question

In 2020 I was diagnosed with mild Bronchiectasis on a CT monitoring lung nodules caused by RA & or Pneumonia.

It was quite a shock especially as the respiratory consultant has refused to see me so still not been seen at all. I have had a phone appointment & it was discussed that as it is mild I can be discharged to my GP to manage!

Anyway I have just had another CT with contrast of Thorax done by Rheumatologist to rule out any malignancy which included my chest. This is not high resolution as the previous CT’s. I’m not due to see my Rheumatologist till October but have managed to get a print out of the report which says Atelectasis is again seen medically in both upper lobes as in 2020.

Does anyone know if this Is this the same as Bronchiectasis? Also could this be what is causing my breathlessness?

Thanks in advance

31 Replies
peege profile image
peege

If I were you I'd give the helpline a call on 0300 555 2800 uk office hours. In 9 years I haven't noticed Atelectasis mentioned on the forum. Sorry I cannot help other that to say if you're in uk (or perhaps its just England) there are certain rights according to the NHS NICE guidelines which are: referral to a consultant (preferably one specialising in bronchiectasis because many aren't & GP s aren't either & lump it in with copd), twice year,y respiratory reviews with the gp practice, prophylactic antibiotics if necessary and sputum analysed if infection is suspected- so you can be prescribed the correct antibiotic. I believe also a rescue prescription. Anyone please correct me if I'm wrong 🙂

Otto11 profile image
Otto11 in reply to peege

Thank you for your reply its much appreciated. I do have a rescue pack in place which I managed to arrange myself & also now got it also on repeat.I have checked our local hospital which is small but is a teaching hospital but only has a small team. The current hospital I'm under is much bigger but they are the ones who feel as my Bronchiectasis is mild I can be discharged without being seen. I will try to call the number tomorrow.

thanks for your help x

Littlepom profile image
Littlepom

Anyone with bronciectasis can have an element of actelactisis although this is rarely commented on by bronch specialists because it is recognised as being part of the condition. There are small air sacs at the end of the airways in the lungs, where oxygen comes in. They are called alveoli.These air sacs became mishapen in bronch, much like a balloon after it has been blown up and then emptied. As a result, the alveoli do not function properly and fill up with fluid. This is called actelactisis. It is this fluid, which also collects in the airways, which the management of bronch seeks to empty from the lungs on a daily basis so as to stop bacteria from breeding in the warm fluid and causing an exacerbation which needs antibiotics. One thing is sure from your post. The respiratory consultant knows nothing about bronch. This is why they have discharged you back to the GP who will know even less about managing this complex condition. There are many forms of antibiotic treatment, which your GP will most likely not know about, with delivery systems which are mostly only available through hospitals or on a consultant's instructions. Also, self management is a crucial componant of staying well with bronch and needs to be taught by a physio.

However 'mild' they state you to be you need to be under the care of a bronch specialist. These specialists are well informed about the link between RA and bronch and have their own specialised physios.

You need to find a bronch specialist that you can get to. They are usually at large teaching hospitals. Take the name to the GP and INSIST on a referral. Do not take no for an answer.

It is this expert treatment and rigorous self management which helps to hold up the progression of the condition. This is especially important when RA is in the mix. Good luck. We are here for you.

cofdrop-UK profile image
cofdrop-UK in reply to Littlepom

Excellent reply LP xxx

peege profile image
peege in reply to Littlepom

Brilliant Lp ××

Otto11 profile image
Otto11 in reply to Littlepom

Thank you so very much for your response. Its so helpful & explains things really clearly. My report of the CT's states that Atelectasis is again seen medially in both upper lobes but the inflammatory changes in both lungs demonstrated on 2020 CT is no longer apparent. This is good news as im now on a different Biologic so its obviously working for the inflammation but this atelectasis has never been mentioned to me before. As I said I have not been seen since the diagnosis in Feb 2020 which concerns me & feel I should know more about this condition. I was sent some paperwork on breathing cycles back then too. Im going to have to find somewhere with a specialist so will start with that first. My other problem is that my GP is in a different area (where I live) but have been treated by rheumatology in Leeds for 20+ years & they found the nodules so referred me to their local hospital in Leeds. My GP cannot access anything other than blood results on their system ( & couldnt even do that till a few years ago) so he just shrugs & says ask Respiratory yourself. Not hepful. The consultant who ive had the last phone call from is an Asthma consultant. ( I do also have mild Asthma. Had it since childhood). I will do some homework this week & see what I can find out. I cant thank you enough for your time in helping me with all this. You are a star x

Littlepom profile image
Littlepom in reply to Otto11

It doesn't surprise me that an asthma doc doesn't know anything about treating bronch. A bronch specialist will know about asthma too. In fact mine works with a specialist in difficult asthma. Good luck with finding a good bronch specialist. I have a feeling that there is a big teaching hospital in Leeds where you can find one. You are entitled to go wherever you want so don't give in to blocking tactics.

Otto11 profile image
Otto11 in reply to Littlepom

Leeds LGI is where I'm currently being treated (or not treated). I've had great care there in the past so I'm quite upset by this turnaround. The Asthma consultant there is the one who said my GP could manage the Bronchiectasis & if he felt I needed referring back to respiratory then he could refer me to York. They obviously have bigger issues. I think its all down to funding in different areas x

Littlepom profile image
Littlepom in reply to Otto11

I guess he diesn't want to admit to his professional cohorts at Leeds that he doesn't know how to treat you. They have such huge egos some of these consultants. Funding issues are nothing to do with it, a complete red herring. Have a look on the Leeds website for a bronch specialist and if you find one you like the sound of insist your GP refers you.It us nithing to do with the asthma doctor especially as he has discharged you If you don't fancy Leeds look at the website of other big hospitals in your area. Just make sure that it us a bronch specialist and not a general respiratory consultant that you go to.

Otto11 profile image
Otto11 in reply to Littlepom

Thanks very much. I have called the Respiratory nurses helpline so waiting for a call back & am looking into the other hospital in Leeds who do have a Bronchiectasis specialist clinic I believe. x

cofdrop-UK profile image
cofdrop-UK in reply to Otto11

Otto the cf/pcd/ bronchiectasis excellent team are not at the LGI but are at Jimmys with the out outpatients at Seacroft. One of our specialist consultants in bronchiectasis is also lead clinician in difficult asthma. There are 3 or 4 consultants within the cf/pcs/bronchiectasis team and they are all great. I can’t re ommend them highly enough. I know the specialist nurses , whilst patients are doing home IVs, cover North Yorks and Lincs. I believe there is a small unit in York but I know little about them and would personally always opt for my team.

If you want to know any contact details please feel free to pm me.

In the meantime, here is a bit of light reading for you, which I had the good fortune of being involved with

europeanlunginfo.org/bronch...

Cxx

Otto11 profile image
Otto11 in reply to cofdrop-UK

I've just read this & I could hug you. I've no idea why my Dr at LGI couldn't just send me there, although as I said he seemed extremely keen to get me to York. I was in York hospital briefly in February & by coincidence I was on an acute ward but happened to see a Dr. Thomas who I later found out was from the respiratory team specialising in Cystic Fibrosis so maybe its her. I'm tired now but will look at it all tomorrow morning. Thank you so much 🤗🤗

cofdrop-UK profile image
cofdrop-UK in reply to Otto11

You’re most welcome Otto 💕💕

wrwhite profile image
wrwhite in reply to cofdrop-UK

Hi, I'm a long term bronchiectasis sufferer and had a similar experience to Otto11 at the LGI in that I was discharged and advised to go back to my GP if I was concerned about my condition. So I went to my GP Oct 2021 as I was concerned about breathlessness. He referred me to what he thought was the chest clinic, I received a chest x-ray appointment at Jimmy's and subsequently I saw the x-ray report on my on line medical record which mentioned chronic atelectatic changes and bronchial wall thickening in the left lower zone (the first time I've seen this reported) . The report stated that I needed to speak to doctor and in a telephone appointment I was advised that salbutamol and Fostair inhalers should give me the necessary relief. In March this year I had a face to face appointment with GP because I was getting feelings of anxiety when I become breathless. He listened to my breathing and did an oximeter test (97%) then advised me to practice controlled breathing when breathless. Subsequently I've still had anxiety attacks and this has left me wanting to ask questions about my condition but my GP can't really help. I was relieved to read your information about the existence of a specialist team at Jimmy's/Seacroft and was wondering if you could let me have some contact names.

cofdrop-UK profile image
cofdrop-UK in reply to wrwhite

with pleasure. I have sent yu a pm with all the info. I hope, no I know you will now get the excellent treatment you deserve

Good luck. Please let me know how you get on.

💕

Greenthorn profile image
Greenthorn in reply to Littlepom

Bang on LP. Bang bang bang. You shot the sheriff! 😂

Littlepom profile image
Littlepom in reply to Greenthorn

I had a feeling that cofdrop-UK was in your neck of the woods. Now you are being helped by THE expert. Things are already looking better

Dottie11 profile image
Dottie11 in reply to Littlepom

Thank you. New to all this.

cofdrop-UK profile image
cofdrop-UK

Great reply from LP. Can’t add except to stress mild, severe or whatever all people with bronchiectasis have to work hard between their consultant, her/his team and be prepared to do for themselves to keep the status quo.

Good luck in your quest to find a decent Bronchiectais con. Please let us know how you get on.

Xx

Otto11 profile image
Otto11 in reply to cofdrop-UK

Thanks for responding. Im going to start my search & will definitely let you know. Do you know if any other member are in North Yorkshire by any chance or am I not allowed to ask this. x

cofdrop-UK profile image
cofdrop-UK in reply to Otto11

Please see my reply above. I am more than willing if I can to point you in the right direction to the amazing team you have been waiting for and deserve. Personally I would contact con through secretary and explain you understand they specialise in the condition you have and would they be prepared to have you under their care. Once they say yes your gp has no excuse to faff about any longer. Your old con has done you a fa our discharging you. It makes the whole process easier.

Good luck and If you want details please do pm me.

💕💕

Otto11 profile image
Otto11 in reply to cofdrop-UK

Thank you so very much for all your help. Its really appreciated. I have been out today but will start to research things more tomorrow & next week. x

Hellodolly profile image
Hellodolly

Hi there

I have bronchiecstasis and was diagnosed in 2018 with atelacstasis too (left lower lobe) but apparently the sticking together can come and go. My consultant has offered me an x ray to check but I haven’t taken it up yet.

There are occasional conversations on here about atelacstasis.

If I were you I’d keep pushing to get back to a specialist. A tantrum at the GP, where you quote Nice guidelines, might help!

Good luck. 😊

Otto11 profile image
Otto11 in reply to Hellodolly

I'm sorry to hear you too have this condition. I'm trying to decide the best way forward with it all as I have a follow up Rheumatoloy appointment in October so could potentially ask them. who know? Ive been putting all my breathlessness down to Long Covid but that was a year ago so maybe its not that at all. I just need some explanations & the chance to ask some questions. I better have a look at the NICE guidelines too. Thank you x

garshe profile image
garshe

Cant advise sorry as dont have that condition, I am severe COPD. Hope you get the answers you are looking for. xxSheila 💕

Otto11 profile image
Otto11 in reply to garshe

Thanks for replying Im sorry you have COPD I was wrongly diagnosed with that several years ago by my Asthma review nurse. A year later at my next review a different nurse said your notes say COPD but I dont see any evidence of that. All I see is Asthma. Needless to say I dont trust our GP's nurses much plus since lockdown they no longer do Peak Flow readings. thanks again & take care Lynda x

garshe profile image
garshe in reply to Otto11

COPD is an umbrella for different conditions, asthma could be one them .I'm not sure of this. I just remember it's not Terminal it's progressive and I have to choose how to slow this down. I was diagnosed 12 yrs ago and unfortunately already Severe so must have had it longer.

Gave up smoking immediately and this has helped massively.

There are others far worse off than me so I count ny blessings.

It's hard somedays but as long as I dont rush and take everything in my stride I manage.

I am Grateful for every day , and dont concentrate on my condition as this causes anxiety.

Love Sheila xx 👍💕

Otto11 profile image
Otto11 in reply to garshe

Oh bless you, it must be so difficult for you. I cant imagine how awful it must be not to be able to get enough breath in as i only have mild breathlessness. I try not to concentrate on my conditions too as long as I feel comfortable that they are being managed effectively & I can rely on the medical staff which until I get this onto an even keel then I can relax knowing I am in safe hands in the right place.Take care Lynda x

garshe profile image
garshe in reply to Otto11

I am great thank you and manage my condition well. I have had plenty of practice.. Just returned from a 3 hour shopping trip .this is my daily excercise. Dont need the Gym🏋️‍♀️ I excercise my way it's so much fun and spot of lunch thrown in perfect. 🙌

Take a leaf out of my book and you'll be fine xxSheila 💕⚘🙌

poppyshola profile image
poppyshola

Hi Otto11.. I just checked 'You Tube' for Atelactasis and there is an abundance of information on there .. diagrams too ... its worth a check if you want a full description of what you're dealing with 😊You can find anything on Google or You Tube

Otto11 profile image
Otto11 in reply to poppyshola

Thanks. I had a look yesterday & it sounds rather scary tbh. I honestly don't think mine can be this bad otherwise surely someone would have seen me by now. Or am I being naive ? x

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