Advice for a newbie - misdiagnosis? - British Lung Foun...

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Advice for a newbie - misdiagnosis?

Purplejane
Purplejane

Hello I am looking for some advice on a new diagnosis. Long story short, I was diagnosed with late onset asthma at 28 (now 56) when I was pregnant with my second child. It was managed very well and I hardly knew I had it. In fact for about 15 years I was told to stop using my inhalers at all so I did.

I have been back on inhalers for about 20 years and was fine until last winter when I had a series of chest infections. The GPs refered me to a consultant as they were unable to help with my breathlessness.

I had a HRCT on both my chest and sinuses as well as spiromitry and then had to wait 6 months for the results. I finally got them last week. I have to say the consultant was less than helpful with the test results as he had forgotten that I had had them done! He is now not sure if I have asthma and I quote 'if anything this lady has mild broncheastasis' and that perhaps I should stop taking my inhaler.

I am confused and slightly concerned. He didn't explain at all what this may mean for my health or what to expect or whether I need concern myself at all and has discharged me from clinic. I don't have a cough but am constantly clearing my throat as I have mucus most mornings and when exercising casued I think by post nasal drip . I have Avamys for this.

Help. What are others experiences? Sorry for the long post.

6 Replies

Good morning PurpleJane, and welcome to this forum. If you have Bronchiectasis then there are folk here who can help you and will be shocked that you have been discharged. It is a condition that needs specialist care. Do you have the results of PFTs and scans?

K

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Oh dear Purplejane. I so often despair of these so called experts. Firstly, bronchiectasis, especially when it is mild, is often misdiagnosed for years as being asthma. Secondly, it can come about from the damage that certain types of asthma does to the lungs over the years or as a result of pneumonia or chest infections.

Unfortunately you are a victim of the ‘I don’t know what it is or how to treat it so I will get rid of the patient’ syndrome. Many general respiratory consultants know next to nothing about bronch and so they treat it like copd or bat the patient back to the GP, most of whom know even less about it. They are simply not trained in it. The only thing I can say in his defense is that he may be an asthma specialist and when he saw something in which he has no expertise he referred you back to the GP, expecting you to then be referred to a bronch specialist. If so, he should have told you this.

So this has left you with a condition which has no proper diagnosis and with no ongoing management programme or treatment. Similarly your GP has been left with no advice as to how to help you.

This is where you come in. As anybody with bronch will tell you, we have to be pro active in our own interests and vociferous in sourcing the correct treatment in the face of government complacency and medical ignorance.

Look on the internet for a bronchiectasis specialist in your area.They are usually at big teaching hospitals. Take the name to your GP and and insist on a referral. Do not take no for an answer. It is digusting that you have been discharged in such a way. People with bronchiectasis need to be under the ongoing long term care of a bronch specialist. It is a complex condition, we are all different and it changes over time. You and your GP need to know the way forward.

If you do have bronchiectasis, you and your GP will need to know which drugs you need and how to handle exacerbations ( flare ups of infection)

You need physio support to help you clear any mucus you have in your lungs because this is where bacteria like to live. Many bronchs do not have a ‘cough’. We cough because mucus in the damaged parts of our lungs needs to be expelled and obviously, whilst we are doing that.

The mucus you describe is what needs to come out.

Please do not take no for an answer. You need to know what you are dealing with and how to handle it before you get more infections and further lung damage.

If you do have bronchiectasis don’t worry. There are many of us who have lived with it all of our lives and as you appear only to have it mildly, a diagnosis and proper care can only imrove the quality of your already full life.

Oh, and no more waiting six months for the results of tests! If you don’t hear within a month you get on the phone to them and insist that they give them to you. You pay their wages!

Good luck. We are here for you

Littlepom has given you excellent advice so not much more to add. The fact that it is mild does not mean that it shouldn’t be treated properly. You need to learn how to prevent it from getting worse and to maintain the best quality of life that is possible. See a good specialist asap and don’t take no for an answer.

Excellent reply from littlepom! As you can see, we have to be our own advocate to protect our future health.

I believe I had asthma as a young child & it disappeared around 7 only reappearing when running, swimming & climbing hills. I always thought it was my heart hurting. First pregnancy I coughed so deeply & incessantly I coughed blood the last 6 weeks. Fast forward to my 40s diagnosed with asthma then in 50s incessant chest infections, most of which I ignored (I'm tough 😬) until 5 pneumonia in 18-24 months. Investigated for aspergillosis & bronchiectasis. It turned out to be uncontrolled asthma was the root of the deterioration of lung health. Now I have bronch as well as chronic fatigue.

I'm mad as hell that I didn't get sorted when I was younger so good luck to you in finding that bronchiectasis specialist. I was told this year by a good respiratory nurse that everyone with bronch must be under a specialist. Don't let anyone fob you off with "well you're mild"! You want the best treatment in order to stay mild. Best, Peege

Thank you all so much for your very thorough and informative replies. Looks like I might have a bit of a fight on my hands! How ridiculous that it has to be that way though. What really got me was the 'if anything' not terribly helpful or definitive,have I or haven't I? And if I haven't what causes the mucus production and the constant throat clearing,asthma maybe. Arghhhhh!

I have a good GP so I shall be making an appointment next week to discuss the results and do as littlepom says and try to go armed with a specialists name. Watch this space.

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