Bronchiectasis : I posted on here last... - British Lung Foun...

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Bronchiectasis

Lina-61
Lina-61

I posted on here last year due to possible bronchiectasis.

After seeing a lung consultant who it was pneumonia and not bronchiectasis and having another ct scan last Oct and being given the all clear after pneumonia cleared and discharged Gp still insists I have bronchiectasis I have requested another ct scan now wants to see me since I am insisting another ct scan.

What are your thoughts and by the way losing weight

Thanks

Lina

17 Replies
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As your GP thinks that it is bronch get them to refer you to a bronch specialist not a general respiratory consultant. They do not have enough training or experience of bronch. The specialist would do a full appraisal, will be capable of properly assessing the ct scan or may want another one done. You can find one yourself on the internet. They are usually at large teaching hospitals. Take the name to your GP. It will be the best thing that you ever do for yourself. Good luck

Lina-61
Lina-61
in reply to Littlepom

Hi Littlepom

Sorry my mistake it was someone that specialises in bronchiectasis and he quoted the above had lung function test a few weeks ago nothing changed from last year and oxygen levels are between 96 - 100

Lina

Littlepom
Littlepom
in reply to Lina-61

Well, with bronch you can have no changes in lung function for years and oxygen at 99 which I have with lifelong bronch. I am not arguing with your consultant obviously but what makes your GP think that you have bronch? Do you have repeated chest infections? If you are hapoy with what the consultant said why do you want another ct scan?

It is all rather confusing.

Lina-61
Lina-61
in reply to Littlepom

No not had any chest infections since last year when I got 6 through sputum samples I want another ct scan bcoz gp keeps saying I have bronchiectasis to see if it's true and if so I need re referring especially with the weight loss

Lina

Littlepom
Littlepom
in reply to Lina-61

You say that the consultant you saw is a bronch specialist and he said from reading the scan that you don't have it.

I don't think that you trust that consultant, especially with the weight loss. So as your GP is also unsure, a referral to another bronch specialist ( check to make sure) would be a good idea. The specialist will have the ct scan done as part of their diagnosis. I think that it would put your mind at rest and help you and your GP know the way forward.

Lina-61
Lina-61
in reply to Littlepom

Thank you will wait and see what is said on Wednesday I have been re referred back to lung respiratory physio again due to me not being able to bring up mucus which also showed up on 2nd ct scan I do trust the broncho specialist just because I have the weight loss and gp just wants to put me on antidepressants

Lina

Littlepom
Littlepom
in reply to Lina-61

There is a condition called dry bronchiectasis. There is little or no mucus. I don't know much about it but a bronchiectasis specialist would

Lina-61
Lina-61
in reply to Littlepom

Thank you littlepom very much appreciated

Lina

Perhaps I'm missing something but I have never heard anyone on this forum or elsewhere, including never seeing it written by the specialist committee that wrote the British Thoracic Society bronchiectasis guidelines, suggesting that weight loss is a well-recognised determining symptom of bronchiectasis. Happy to hear differently from others. Of course weight loss can come from many different physical and emotional changes in our bodies but I don't think it's a classic bronchX symptom.

I'm confused why the GP is challenging the bronchiectasis specialist's analysis and also rather intrigued by your history of 6 infections in one year followed by none the following year.

If I were the NHS I would be wanting the GP and the consultant (aka bronchX specialist*) to get their act together and exchange viewpoints/define any differences of opinion and basis for such before spending public money on another CT scan or bronchX specialist consultation. If they won't communicate then the right thing to do would be to complain thru' the appropriate NHS procedure. I appreciate this may be difficult for you to do if you otherwise have a good/valued relationship with your GP's practice.

Up to you of course if you want to pay yourself for a second bronchX specialist's opinion.

If it gets to the point that you have an opportunity to ask for further and better particulars I would recommend asking whether your existing bronchX consultant has a radiologist's report on the most recent scan that does in fact provide evidential support for the bronchX diagnosis. Usually the radiologist not the consultant is the one who leads the charge on interpreting scans and usually it is the physical analysis of the lung structures that is the determining factor to a bronchX diagnosis. I believe, having inter-alia read the BTS guidelines, that stuff like sputum production, coughing and infections are all clues to a potential bronchX diagnosis (among other outcomes), but it's the physical analysis and measurements from the CT scan that are key. But hey I'm an interested party rather than an expert

Sorry if I have missed something or if this reads unsympathetically. Apart from having bronchX myself I can fully empathise with your concern about unexplained weight loss. It's damn difficult to isolate the cause unless something obvious shows up on a fullest range of blood etc tests. My bronchX consultant recently suggested at my bronchX annual review that I go for a PET scan if other tests are drawing a blank in the face of my one year decline from 82 to 76kg. May be a good idea anyway at my age (68) since it would give a good level of assurance (or otherwise) about the range of cancers that can afflict seniors like me and need early detection.

Wishing you the best in your search for answers.

*As I read it you are telling us that the lung consultant is claiming a level of experience in bronchiectasis.

Lina-61
Lina-61
in reply to santisuk

Hi santisuk

Bronchiectasis specialist was quite happy that I didn't have bronchiectasis he said it was pneumonia which took 6 mths to find last year I went through a lot of stress with losing my mother and sorting her estate out everytime I go to my gp at my reviews they insist on saying I have bronchiectasis they don't read through their notes not given any treatment by specialist only steroid nasal drops and cabocsteine to loosen mucus and referring me to lung respiratory physio to help bring my mucus up the only thing showing on my 2nd ct scan just recently been diagnosed with h pylori so going through stress of that with 2 lots of antibiotics it was a gastro that referred me for a ct scan since I loss a lot of weight last year and found inflammation of my right lung.

Lina

santisuk
santisuk
in reply to Lina-61

Sounds like you should find a new GP. Incomprehensible that they ignore the specialist consultant's advice ("insisting" suggests you have pointed out that the consultant's views are contradictory to their own but they still keep repeating the mistake)

I'm sure that I won't be the first in suggesting that the understandable stress and worry you have faced may be the source of your weight loss. Can use up as much energy as physical excercise and maybe has affected your appetite?

Lina-61
Lina-61
in reply to santisuk

Thank you santisuk my husband feels the same that is why I'm insisting on another ct scan to determine if anything has changed and it has I need re-referring back to bronchiectasis specialist

Lina

Cateran
Cateran
in reply to Lina-61

I am in agreement with santisuk about a closer look at the bronchiectasis guidelines of the BTS. My consultant is prof. James Chalmers at Dundee Ninewells University Hospital, an internationally renowned bronchiectasis specialist, therefore he would also second I am sure the recommendation that you have another TC scan and insist on further in-depth analysis of your weight loss vis a vis bronchiectasis, as santisuk advises.

Lina-61
Lina-61
in reply to Cateran

Thank you Cateran sat waiting to see gp now

Lina

Lina-61

Hi, try to get a second opinion from another consultant, even if you have to pay for it.

With the 2No opinions you should be able t make sense of it all

IKeith

Lina-61
Lina-61
in reply to lKeith

Thank you Ikeith

If you've already had a CT scan (a HR one for Bronc apparently ) then can't another consultant/radiologist just loot at it to put your mind at rest?

Better safe than sorry. (Or if they let you have another CT scan - although you don't want to be overdoing the radiation thing unnecessarily) .

My mum's consultant for Bron always checks my mum's weight as she shouldn't lose more apparently. Also my mum had Bronch for years but no one told her/me for several years after her initial bronchoscopy, which I would have liked to have known.

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