I have just posted this to asthma UK so apologies for anyone reading it twice!
Hi everyone! I hope you are all well.
I have suffered with persistent chest infections for the last 3 winters, just entering the 4th. I have suspected bronchiectasis for 3 years as I seem to have all of the symptoms.
I've finally had a ct scan followed by a phone appointment where the respiratory cons said there is damage in my lungs but it is not bronchiectasis. I think she said the damage was in the larger airways rather than the small. I also had a 14mm nodule so had another scan 3 months later. Still not had results for this as appointment keeps getting moved. I'm due lung function test results in the same app.
I went to my first respiratory physio appointment at the weekend as consultant said my constant "band around the chest feeling" I describe may be bad habits with my breathing post infections. After giving all my history to the physio, she is convinced I have bronchiectasis and that is how she is treating me.
I just wondered if anyone has had a diagnosis of bronchiectasis without a ct scan backing it? She said it may show up later on. So does that mean it is mild? I just always thought the only way to diagnose was with a ct scan.
Can anyone help with my confusion?
Thanks for reading.
Becky x
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BP135
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Well, it depends who read your scan. It really needs a bronchiectasis specialist to diagnose it. Unfortunately many general respiratory consultants know very little about bronch. It is complex and can present in different ways. They are not all trained and experienced enough to recognise it. The answer to your ‘band around the chest feeling’ is indicative that the person you saw is just saying something to brush you off. and cover up their lack of surety.
You have a history of a lung condition, compounded by infections for goodness sake.
Physiotherapists do learn how to manage bronch and are very used to seeing people who have it. Based on your physio’s opinion, I would suggest looking for a bronch specialist in your area. They are usually at big teaching hospitals. Take the name to your GP and tell them that you want to be referred to the bronch specialist for confirmation. If you have another condition they are well qualifiedto diagnose what it is.
Long term asthma can result in bronchiectasis. If you have developed bronch, the sooner who start appropriate self management and bronch consultant guided care the better.
If it is managed properly you can live with bronch feeling much better than you probably do now.
We do have to be very pro active in our own interests and vociferous in sourcing the right treatment.
Thanks littlepom that's really helpful. I've been feeling lost for quite a while. I was so worried all along that it would be bronchiectasis but now I've been told I actually feel more relieved if anything. If I have a diagnosis I can at least find out what I can do to help myself.
I will look for a specialist. I thought the respiratory consultant was a specialist but bronchiectasis is down as a special interest .
I hope that you get to the bottom of everything. I see that there is a nodule to be decided on as well. An interest in bronch covers a wide area of experience and so I do hope that you manage to find more specialised help but if not, at least the person you are seeing is getting to know you and the results of all of your tests. Do let us know how you go on.
I have serious brochiectasis. (3 long lung clearance sessions a day). A CT scan is due on 13th October but they have cancelled it and will phone me instead. Unbelievable. And yet my endoscopy and heart tests (two separate appointments) went ahead. What is their reasoning? They are calling off a CT scan where there is more distancing in the procedure. Any answers please. Cliff.
Sadly everything is upside down at the moment and appointments for all sorts of things are going haywire. Hopefully before too long all of the tests will be done and they can put the results together to get answers for you.
Mmm .....are physiotherapists not taking the advice of the respiratory physician? Sounds not good to me. Bronchiectasis is diagnosed usually via CT scan. Hope you get more clarity from your more recent scan. Cx
Im not seeing my consultant until 29th oct as the appointment has been moved back twice. I can't communicate with her other than appointments so she doesn't know what the physio has said. I went private for it because God knows how long the wait would be for an NHS respiratory physio during this pandemic.
I have lots of questions to ask the consultant when I do see her. Thanks for your reply x
I have had bronchiectasis for over fourteen years now but when I was diagnosed I was shown the scan and they pointed out the dark areas of damage on both lungs.
That's what I need, to see the scan. I had a phone appointment after my first scan so haven't seen anything. That might help me to understand a bit more. Thanks for your reply x
You history sounds very like mine- long term (mild in my case) asthma, then persistent chest infections for several years, treated by my useless surgery with short courses of antibiotics, until I had a very bad attack which got me referred to a specialist. Here's the difference between us. After a long wait and many, many tests, she diagnosed bronchiectasis.
It sounds to me as if you too have it and would benefit a lot from the treatment and advice I have had. She referred me to the Pulmonary Rehab team. In this area a GP can refer you (a *** doctor at my surgery had refused on the grounds that I did not have COPD.)
It has not been all plain sailing since then, but infinitely better. Asthma would qualify you.
Hope you can get things moving. Littlepom's advice sounds excellent.
I also get lots of short courses then have to wait for it to come back before I can get more. My last infection of last winter took 6 weeks of antibiotics to clear in the end, i had had it for 6 months and 4 lots of antibiotics and the dreaded pred. I only got 6 weeks because the consultant gave me it. My gp left and i now get different locums when I go in, rarely see the same person.
I've never heard of the pulmonary rehab team. I will also ask the consultant about this. Thank you.
There may not be a Pulmonary team in your area, but there may be something/ someone offering similar support. Sorry you're stuck with locums- you need continuity. Bronchi apparently needs a long course of a strong antibiotic- so I'm learning. I'm fairly new to this. Learning as I go, and so I suspect are a lot of the medics.
Thank you Alberta. I have found a pulmonary rehab team that run a clinic in my town. I'm so glad you mentioned it. I'm going to ask the consultant for a referral if possible. It did say on the website that they don't take asthmatics that don't have copd/bronch. So I will probably have to get a definite diagnosis first.
The respiratory physio also said that about antibiotics. I feel like I'm in safe hands with her. Maybe the difference is that I was paying her, but she really listened and explained things so well. I felt more positive after I came out, even though she told me she is sure I have bronchiectasis, something I have dreaded being told for the last 3 years.
Glad you've found a Pulmonary Rehab course. Hope you don't have to wait too long to get on it. The staff on mine were so supportive and jolly it made me feel better just being there. Good luck xx Alberta
Hello diagnosed with bronchiectasis left lower lobes 1957 at Groby Road chest hospital Leicestershire 1957. This was the time when we had specalist hospital to treat certain coditions such as TB and we had isolation hospitals for infectious disease. This hospital along with others was closed and incorporated into general hospitals I am not sure when.
I have never had a CT scan lots of other treatment though.
i don't really want to repeat myself on ths forum because I have subscribed this infomation before. Interestingly for me I am now being referered to a "chest" specialist and a possible CT scan.
I have had many "escapades" over the years and now struggling with breathing but I have been there before. My usual 5 pillows did not work last night and at 3 oclock I could not breathe very well so Aersure followed by a nebuliser all bought for me by myself.
Topped it off with a good dose of Covonia sat in the chair and dozed off.
And suprise and delight awoke at 9.30 to glorious sunshine beaming through the windows.
I am not being flippant about this I can assure you it is very scary because fear can take over when you are unsure of the outcome.
Four years ago I saw a respiratory consultant privately as I had been having recurrent chest infections over quite a long time and I felt I was getting worse, not better. I already had a diagnosis previous diagnosis of asthma (14 yrs) and a more recent diagnosis of COPD (1 yr). My GP kept prescribing antibiotics and Prednisolone but a couple of weeks later the infection would be back. At my COPD review, the nurse was concerned about my cough and after listening to me for a while, she said it sounded more as though I had Bronchiectasis.
When I saw the consultant he transferred me to his NHS list and ordered a CT scan which I had quite quickly. When I went back for the results the consultant told me that the scan confirmed COPD and that there were a lot of areas of inflammation but the the radiologist had said there was no Bronchiectasis. The consultant disagreed with this on the basis of the history of infections and everything else I had told him. He said that, in his opinion, I should be treated for Bronchiectasis and that has continued to be the case. The main difference, as I see it, is that I am given 2 weeks of antibiotics rather than 1.
I am due for another scan this week, so I will be interested to see if anything shows up this time. Last time I had the CT with contrast but that hasn't been mentioned this time. Also, I have just had to start antibiotics and Prednisolone again (third lot since end of August) and the GP said it will make no difference to the outcome of the scan. I hope she's right!
Regarding Pulmonary Rehab, my GP told me there was none happening in our area. A week or so later, I went to a Breatheasy group that had recently started up and there was a resp. physio there talking about - you've guessed it - Pulmonary Rehab. I told her what my GP had said and she told me that he was wrong and that I should go back to him. She wrote down some info for me and told me to ask for a referral, which I did. The GP was surprised to learn that groups were running! The referral was made and I was able to join a group which I found extremely helpful.
It just goes to show that not all the 'experts' know what's going on and their opinions may vary so it's sometimes worth getting a second opinion or at least questioning the first one further.
I have just looked it up, there is a pulmonary rehab group within walking distance to my house! I will definitely mention this to my consultant in 2 weeks time. I have a growing list of questions and suggestions for her.
The respiratory physio also said to me that I should request 2 weeks of antibitiocs instead of 1 from the gp and demand to see the practice manager if they refuse.
Let me know how your next scan goes and if bronchiectasis is mentioned.
Hi Becky, terrible to hear what you have been going through, my consultant pointed out the different area's in my lungs with bronchiectasis damage, its shaped like signet rings, I wish you luck in getting to the bottom of this and getting a proper diagnosis x
Hi Becky, my first scan was negative and I then went on for further tests for another year. As I was very ill and pneumonia was occurring every 6 weeks or so my consultant began the tests again and fortunately the second ct scan showed Bronch. Once I was diagnosed I began to get better. I do hope you get a diagnosis soon. Sometimes we have to push for help. Don't settle for waiting, ask for help. Take care, Maximonkey
Hi BP, I am fine, you take care and good luck. Maximonkey
CT scan diagnosis for me during / after steroid treatment for pneumonia, following a bad health winter of chest infection, flu, pneumonia, followed by bronchiectasis and diabetes type II diagnosis.
I just thought I'd share a little update for anyone who may be in a similar position.
I had by respiratory cons app yesterday. She said my lung function test was brilliant, no issues at all, everything in normal or above normal range (I was doing a lot of running in the summer when it was carried out, as I always do, come autumn I can't do anything!)
She initially said my second CT scan showed my lungs were clear and normal. My 14mm nodule had disappeared so must of been a bit of infection lurking and there was no damage. I kept questioning her on the damage because she had said at my last appointment that I had damage to the larger airways but it wasn't the smaller airways so it wasn't bronchiectasis.
As my resp physio is certain I have bronch, I questioned the consultant further until she eventually showed me the scan and pointed out the thickened walls on the bronchials (if that's the correct word?!) which she then admitted could be the start of bronch but said it wasn't clear enough to diagnose.
She is still sending me for a blood test to see if I have an antibody deficiency because I have real trouble shifting chest infections. Also checking my ige levels to see if I'm reacting to something. So we shall see...
I am doing everything the resp physio told me to do to help to keep my lungs as clear as possible, so that can't be a bad thing whether it is bronch or not. It's just frustrating as I feel like my resp consultant wants to discharge me like she's done enough tests and given up. But I'm not any better so I want to remain under her care until I find a treatment that works. Accepting that at 32 years old I will always be ill for 6 months of the year and wont be able to run around with my children is heartbreaking. I just can't accept it. I want answers!
Hope everyone is well and not being brought down by this miserable weather!!
Hey there...i see your story and yea it sucks, I m also 32 and have been coughing up mucus from my lungs everyday for a month with chest pains and low energy..... After accidently poisoning myself with household cleaner i contracted chemical pneumonia and expected it to clear up like the local hospital ER said, but after doing my own research you need to take corticosteroids to reduce inflammation which i was not given until i went to immediate care a few days later. I feel like suing this hospital! I am waiting for my coronavirus test to come back negative so i can see my doctor, hopefully i can get a CT scan to check my lungs out. You need to be vaccinated for the flu every year and pneumonia every 5, as these can be fatal.
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