I got diagnosed with bronchiectasis after having a scan. Previous to this for roughly 12/18 months I had Coughed blood, had a relentless cough day and night, coughing mucus constantly but when my gp listened to my chest she said it sounded clear, and that was that.
It was only after having the scan which showed a mass on my chest (mucus) that I was diagnosed. I am now luckily supplied with a rescue pack of antibiotics.
Has anyone else had this experience as I wonder if this gets missed a lot.
Ru aware bronchiectasis a/b course for infection is 14 days.also do read up on clearing mucous from lungs as needs to b done minimum twice a day.if mucous is too thick,carbocysteine is v gd
Hi Patk1, yes, overtime I have been doing the things you mentioned. I was referring to the initial diagnosis when on a few occasions I visited my gp and she said my chest sounded clear, but the scan showed that I had an infection, so can GPS always detect infection with bronchiectasis.Thank you for your advice, I too have been prescribed carbocisteine.
My drs always heard the muck in my chest but didn't give me a formal diagnosis til had ct scan.whn consultant did bronchoscopy,he said it would take 12-18 mths to clear the build up of infected mucous in my lungs.its called a rare orphan disease.i suppose it's not the 1st thing they think of (((
GPs and even general respiratory consultants often miss bronch and its exacerbations. They aren't sufficiently trained in it. Even if they manage to diagnose it from a ct scan, many gen resp cons do not know the intricancies of treating it and tend to treat it like copd.That's why we need a bronch specialist to look after us and tell the GP how which drugs to provide as well as their access to hospital only drugs and home IVs when needed.
There are definitely other members here whose bronchiectasis diagnosis was initially missed or delayed. I don’t have ncfb, but I do have a few uncommon diagnoses that have been missed - in one case for more than a decade - and come to permanent harm as a result, and the more time you spend talking to others with chronic health conditions, the more you begin to realise that getting diagnosed with anything is often not as straightforward as it should be, particularly if it’s a more unusual condition. Part of the issue with bronchiectasis could be that - as I understand it - it is a relatively uncommon diagnosis, and on the surface of it, it can look like more common complaints. There are people out there who have no underlying disease but have fairly frequent infections, or even cough up mucus for non-respiratory reasons. CT scan is also the only way to diagnose ncfb, so whilst the doctor likely should have requested one sooner, you wouldn’t have a got a diagnosis without having a scan. But it’s also a case of not everything being cut and dry in terms of symptoms and tests: my daughter is wet on a daily basis even when well as the result of her lung disease, which bronchiectasis is an element of, but she can sound completely clear and fine despite having rampant pneumonia. It’s actually more usual than not for her chest to sound clear even when very unwell. In practice, listening to someone’s chest is only really useful if you can hear something.
I’m not making excuses, or suggesting that the GP shouldn’t have done more, because they should have done, just making the point that there are factors as to why it may have been missed as long as it was. That’s without getting into whether your gp is a particularly competent one or not, or the issue of medical bias, which is actually widespread and plays a significant part in why things can sometimes get missed, or the impact of covid over the last two years.
Hi Charli_G, yes I agree with everything you say, with everything else she is spot on.I think what I meant to say was because it’s so hard to detect at times it is likely (with bronchiectasis) to get worse.
I only got sent for scan after coughing up large amounts of blood. This was after 12/18 months of being unwell and being told I was ok, so after 3 X-rays and the scan thankfully I was diagnosed. I suppose it’s up to us to be aware of our bodies and question any concerns we have.
It’s a difficult balance. I absolutely respect that doctors are (generally) far more medically qualified than me in all regards. They’ve dedicated years of their lives to studying and practicing what they’ve learnt. However, as you say, I know my body and how my conditions normally effect me. I know what’s normal for my daughter and her disease. I also know that doctors are only human, and they do fairly frequently cock things up, although often times the errors are minor and no harm done. There are checks and balances that exist to mitigate for mistakes as the result of doctor’s being human, but they’re not foolproof. I never go into a consultation from a place of doubting what I’m about to be told, nor do I lack trust in the medical profession, but experience has taught me to ask questions and follow my instincts if I think something is wrong. In paeds, that’s rarely ever a problem. In adults, they tend to like it a lot less, but if we don’t advocate for our own health and well-being, there are no guarantees that anyone else will. This is why educating yourself on your medical care is important to make sure you’re getting the right care for what’s wrong, in the right way.
I was with a surgery which depended on locums, so you never saw the same person twice. Every time I got a chest infection they gave me 5 or 7 days of antibiotics and left it at that, until i had a really bad infection- even got a home visit- and that stirred them to take action (very slowly.) The first thing the lead doctor said to me was, ' You are a smoker.' I just about managed to croak out 'No.' But they did refer me, so 6 months later I saw a very on the ball consultant, who organised a lot of tests, including the all important scan, and told me I have bronchiectasis. Many medical professionals have a lot to learn, including yours by the sound of it. Good luck and hope your future is brighter.
Hi Alberta56, I'm glad you eventually got your diagnosis. To be honest, I hadnt heard of bronchiectasis before and as my GP once said to me, because of my weight loss and coughing up blood she thought it could have been something much worse.
But since then (3 years +) I have educated myself, try to eat well, but must do more exercise,i tell myself. Stay well.
I'd never heard of bronchiectasis either, neither, I suspect have some of the medical people I've come across. Like you I have trouble with exercising. It will be better when the weather warms up. Best wishes.
Hi. My diagnosis was definitely missed. I had a wheeze for months & numerous infections. It was only after severe, widespread haemophilus influezae /pneumonia that I was referred to a resp consultant & actually paid for a scan else it would have taken 3-4months.I say it was 'missed' but to be fair it can only be diagnosed by a CT scan so beyond the remit of a GP. However, they are needed to refer to a specialist.
All the above sounds very familiar,after nearly 20 doses of increasing antibiotics every 3rd week I was referred for a chest x-ray of which I was asked to pack in smoking as I had supposedly chronic bronchitis!After insisting on a CT scan eventually I was diagnosed with bronchiectasis and tested for aspergillosis at Wythenshaw.Met a fantastic team of consultants who diagnosed that I was colonised with haemophilus,moraxella and a trace of pseudonoma.I was given IV drugs at hospital and have not had an infection for over 12 months ,oh and I am definitely not a smoker 😊Good luck and keep fighting x
Sadly, yes. Took me nearly two years of repeated chest infections to get the GP to take it seriously. But I then got referred to a general respiratory physician who just said it was worsening asthma! I then had to insist my GP sent me for a second opinion from a specialist cough unit where the bronchiectasis was diagnosed, and then I was finally referred to the local bronchiectasis team who are fantastic. Sadly a lot of GPs don't have a clue and try to fob you off and even resp. consultants can be quite ignorant. You're certainly not alone. It still makes me feel angry.
Hi, yes my respiratory consultant is great, but because of covid have been having telephone appointments, but even then he checks that I'm OK, not only the bronchiectasis but with everything else, my anxiety etc.The only thing I find hard now is not being able to take the beta blockers that were prescribed for the anxiety as they caused wheezing and they interact with my inhalers. Stay well.
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