after being diagnosed with asthma for two yr had lots of chest infections, Wes referral to respiratory clinic due to COVID had to have telephone consultation,told by letter that I had bronchiectasis,no scan or X-rays just saying he has told dr to give me steroids for a month and theophylline tablets no other advice only lose weight it will be better (I am 5ft2 and weight 9stone 10 which is in the normal range)and finished with so I have discharged her from further follow up, so I did google it because I couldn’t get a phone consultation with dr,well I did but they had not received the letter even after 2 wks,in the end I give them a copy of mine the 2 wk later said they hadn’t got it yet ,so explained I dropped it off in person 2wk later I got a telephone call that was due the day after same time so was not organised with my letter as I was out and about ,just for him to say plenty people have it it’s just small pocket in one lung nothing to worry about ( how he knows that when I have not had a X-ray or scan due to COVID I will never know) my dr is usually good before the COVID was supposed to be going for a heart scan but cancelled because of COVID ,it has got better than it was but I still have a sneaky feeling how do they know it’s bronchiectasis as I thought it can only be confirmed by scan or X-ray ,I do feel I know more about this by using this site thanks to all of you, feel like the only people I can talk too ,I also have the asthma spray and tablets that was advised to shield last lockdown, this lockdown I still have not received my email ,at the moment I just feel so messed up,also granddaughter who we adopted at 9 months now14yrs had been diagnosed with just now diagnosed with autism as I always suspected I really feel like I am fighting for things all The time or dr don’t believe ,me so I am great full for evidence my retired dr always believe me and got the evidence ,but all these different dr they just don’t seam to know YOU sorry for long post don’t often post just think it all getting to me xxxxxx
Bronchiectasis : after being diagnosed... - Lung Conditions C...
Bronchiectasis
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Hello Elsie. You are right. They cannot diagnose bronchiectasis without a ct scan. The treatment that they gave you, steroids and theophylline is for asthma, not bronch. So basically the doctor who ‘diagnosed and treated’ you came up against something that they don’t understand, made a wild guess, threw your asthma drugs at you and got rid of you.
It is absolutely disgraceful and makes me want to spit tacks.
I see it over and over again.
You are going to have to take your future health and well being into your own hands by being very pro active.
Your GP is out of their depth and GPs know nothing of bronch anyway.
You need to be diagnosed by a bronchiectasis expert. If you do have it you should then continue under their care. They will instruct your GP in which drugs to give you and also help you to manage the condition.
If you don’t have bronch they are very capable of diagnosing other conditions.
Do not accept being sent to a general respiratory clinic. General respiratory consultants have very little knowledge of bronch. They are trained in copd and simply do not treat enough bronchs to gain experience.
Find your own bronch specialist. They are usually at big teaching hospitals. Or let us know where you live and maybe someone in your area can recommend theirs by pm. Take the name to your GP and insist on a referral.
Do Not Take No For An Answer.
You will feel better once you take charge.
Good luck.
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Thank you ,littlePom just respiratory clinic ,tablets and then no more follow up ....I live in bury Manchester,(fostair and montelukast tablets Wes the reason I was on shielding last time now given theophylline (I also have diabetes and arthritis so have plenty tablets)also knee replacement and 2disc repairs in back just thinking have been given tablets and no more information but newly diagnosed with bronchiectasis no letter for shielding rang dr and they say not sure if they giving me one as not all categorise have been given this time what should be my next step
Difficult. I would speak to the practice manager as you now gave an extra complex condition to add to your existing ones. See my post above. We are all going to have to be proactive in our interests over this.
If you were on the shielding list last time email the Practice Manager at your surgery. Tell them that you seem to have been overlooked this time and could they make sure that you get the email so that you can register for assistance. It is the Practice Manager’s responsibility to protect their vulnerable patients.
You can have both asthma and bronchiectasis. I have emphysema/copd and bronchiectasis, the bronchiectasis developing long after the copd diagnosis.
CT scan shows most all specific lung issues.
You can ask for a copy of all your test results and letters from your consultant to your GP.
Perhaps your diagnosis was based on symptoms and sputum samples you may have provided and that CT scan is put on hold at the moment because of covid 19
Have you been prescribed carbocisteine? If not perhaps request a prescription from your GP if you experiencing difficulty coughing up mucus. You need to get it off your chest so as to avoid repeat lung infections.
Drink plenty of water
as mention in another post;
youtube.com/watch?v=XvorhwG...
hope you are feeling much better soon.
Ask for any help through adult care at your local council.
![Superzob profile image](https://images.hu-production.be/avatars/378aa4e69f9dfd8428c705b218e08eca_small@2x_100x100.jpg)
I was diagnosed with both (+ COPD), though I wasn't told about the bronchiectasis for about 3 years after I complained about excessive mucous production (which I understand can be one of the symptoms) and prescribed montelukast. Unfortunately, I found that made me very tired and changed to N-acetyl cysteine, which seems help.
But getting back to @Elsie1930’s experience, I’m afraid we have all suffered from the “telephone consultation” phenomenon, which is clearly inappropriate in many cases. However, it does seem that if you persist (as I did with my wife’s condition), you can actually get to see someone, and appropriate tests and treatment may then follow.
Having said that, I think it’s important to realise that diagnosis is simply a way of identifying the correct treatment; it’s actually not much use on its own! Consequently, a telephone consultation might fortuitously hit on the right treatment, even though there may not have been a proper diagnosis - obviously, not an ideal situation but, in the present climate, I guess we can’t expect much more. But I do agree with Hidden that we all need to take ownership of our own conditions - sometimes our bad experiences act as a catalyst. We might not have the luxury of high-tech diagnostics, but we can still discuss treatment options with whomever we can get hold of, and try, as best we can, to look after ourselves.
Chronic Bronchitis also produces a lot of mucus, a medical professional will most likely know the questions to ask the patient and the answers could well indicate if Chronic Bronchitis or Bronchiectasis.
Both conditions of course are described on the BLF website, they do differ. (Chronic Bronchitis falling under COPD.
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Thanks, Hidden , I sometimes think that even respiratory consultants make it up as they go along - though, to be more charitable, it is probably more difficult than we suppose to accurate diagnose a particular condition in a particular individual because symptoms may vary so much.
I well remember some years ago when a dentist drilled the wrong tooth, causing an abscess to flare up in the adjacent one; I changed dentists, only for the new one to do exactly the same! At that point, I decided that both dentistry and medicine are black arts, rather than the sciences which we would prefer them to be.
Specialist respiratory Consultants usually refer to CT scan for the exact diagnosis, different lung conditions have different characteristics, being a specialist in lung / respiratory desease they generally have an idea of the different ones
You could always ask next time you see your consultant if you are unsure of their expertise
I've had the same experience with a dentist but just the once, but once was enough. However I have had some very good dentists as well. So one extremely bad experience doesn't mean all in that trade are tarred with the same brush.
Another video which may help you:
youtube.com/watch?v=vz2ruFd...
I would suggesting contacting the BLF helpline on Monday for further advice.
I believe the medication you have been give is to help with your asthma and a chesting infection.
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Hi Bkin, all those people, presumably bronchiectasis/lung patients are deep breathing, huffing and coughing together in a room with all the windows completely closed for a prolonged time, this is how infections like pseudomonas, haemophilus and strep are easily picked up by lung patients. My consultant said all bronchiectasis patients will always carry some degree of infection. Hopefully now, with covid more people are aware of cross infection, the normal respiratory droplets that hang around for hours in enclosed areas, good ventilation is needed, I have never understood why people don't realise this, Ventilation please.
Of course it would not be happening in covid times. The video was uploaded to You Tube in 2018.
I think all those people were student nurses learning how its done so they can show their patients,* I don't think they all have Bronchiectasis, but of course I could be wrong. and it could be summertime with windows open in the room hard to see
*(show the patients, try and help the patient mentioned in the video - before and after 6 minutes into the video)
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I'm pleased they try to help but 15 years ago I picked up haemophilus in a breathe easy group meeting, this bug has caused ongoing illness for me which would could have been avoided with ventilation. Thanks Bkin for posting the clip, it's interesting to see the use of a belt now, I use a folded towel.
Oh that was rotten luck zube, but I daresay the Breathe ~Easy group would not have said to the haemophilus carrier he could not attend, and when you think about it the person would have been attending doc surgeries, hospitals, pubs, restaurants and could have put many others at risk too. I can understand how peeved off you are about it though.
I was peeved when I got steroid induced diabetes and bronchiectasis after pneumonia , not to mention osteoporosis and arthritis, one thing after another since my emphysema diagnoses, I know how they all came about though, not that is any consolation. jees life can be trying at times.
Keep up the good work in looking after your health. x x
Hi sorry to hear that you are not being better treated and it has nothing to do with Covid19 for the lack of care you have received.
No "Doctor" can pluck out of the air that diagnosis it's impossible to do so unless they have some special powers to be able to see inside your lungs.
I had a x-ray which just led to a diagnosis of COPD then I had a CT scan which gives a much better view of the lungs and got diagnosed with Bronchiectasis and some other things as well.
If I was you I would be complaining about this diagnosis and abysmal treatment to PALS.
GPs are what the name/title implies General Practice and have limited knowledge and are not Specialists.
If you are having problems with the GP surgery as well try and contact the practice manager or better still if it's possible change to a different GP Surgery.
So sorry you are having to go through this when you need to know what you have and the right treatment and care for you.
Good luck and keep safe.
♥️
You have to be tough and get seen by a doctor- they are sometimes very lackadaisical about copd in general!
Hope things soon take an upturn. Don't worry too much about the autism. My adult daughter has it, and from hers and other's experiences I've seen their difficulties can lessen as they get older.
Hi Elsie. The doctor is giving you his best guess. It can't be diagnosed without a cat scan. I had a lot of chest infections. My lower right lobe was always rattling and wet and getting pleural rub over years. The doctor said bronchiectasis and sent me for a scan. It doesn't happen at the moment. If you trust the doctor ok. If you don't try another. I always have co-amoxiclav 500 ten days supply and 60 × 5mg prednisolone for the treatment of any chest infection. Anything less than that the doctor is short changing you. 250mg of amoxicillin for example, with a "see how you go" is just negligent. The likelihood is bronchiectasis but eventually you'll need that scan. I take azithromycin Monday, Wednesday and Friday as well. You maybe need that. It's a preventative antibiotic. (It's supposed to protect against covid and tests are being conducted. I dodged the coffin because of that I believe in Kettering General Hospital where I must have caught it after shielding at home.) Chin up. Soldier on. Get it off your chest. And Doctors are not gods and should speak to you on human terms adult to adult.