Lack of help.

[Glynshem]

Hi, I have experienced loads of problems since being diagnosed with Bronchiectasis some 10 years ago and I am so confused.

To cut a long story short I went from being a reasonably fit guy playing rugby every weekend to hardly being able to run at all. For 2 years I was back and forth to my GP who diagnosed it as Asthma and didn't really seem that bothered.

After about a year of getting worse and constantly going to my GP I was sent for a chest x-ray but this came back clear and nothing more was done.

After another 12 months of going back and forth to my GP I decided to go private.

I saw a well respected consultant and after various tests and an MRI scan I was diagnosed with having Bronchiectasis. My consultant was going to arrange various treatments and tests to see if there was an underlying reason when unfortunately I was unexpectedly made redundant and had to give up going private!

I naively thought everything would continue under the NHS however for the last 10 years my GPs have not really acknowledged that I have Bronchiectasis and have continued to treat it as asthma! In that time my health has got consistently worse and after a year of pushing my GP I was referred to the hospital, they gave me a chest x-ray and as happened 10 years ago my chest appeared fine on it and they have basically refused to do anything else! I am really confused, I have no idea if I have Bronchiectasis and if I have I have no idea why no one is taking me seriously. My breathing is very poor, I have never smoked but struggle on hills and stairs and get colds regularly that really knock me out!

I am not blaming the NHS, they are excellent normally and I have the upmost respect for them but I do not know what I need to do to get help with this! I read on here about physiotherapy but in the years since this was first diagnosed this has never been suggested to me! The GPs at my surgery have all changed since my initial diagnosis and it is almost as if they do not take my private diagnosis into account. Has anyone else struggled with getting diagnosed and if so any suggestions on what I can do next? I am getting worse each year and it's very frustrating.

Thanks for your time.

Glyn

[Hidden]

You need to tell the doctor that you are getting worse and you need referral to a specialist. If they don't do this then go to A and E. I've have it myself recently trying to get referred and it takes so long.

Hope this helps.

[Glynshem in reply to Hidden]

Hi Casey, thanks for the advice I appreciate it and will go back.... Thank you.

[Patsy164]

Hi Glynshem I went for 5 years with big problems and was diagnosed in the sixth year. They didn’t even give me an X-ray in all that time, which I found alarming but just giving me lots of blood tests ct scan it was when I said I haven’t had a X-ray which made him send me for one which showed I had scarring on my lung where I had had pneumonia. He sent me for a thorax ct scan which showed it up. Apparently it is very difficult to diagnose, so I am told.

Don’t dispare I would just say to your GP that you want to get this cleared up once and for all you know that you are unwell and wish to be referred to a consultant. This is really in our hands now days to be making sure we are getting the right treatment and chasing for results as the system is on overload.

I have a bug in my lung called pseudomonas and I had a sputum test and didn’t hear anything for ages I was going on my holiday in 2 weeks checked with the hospital about the results and had the consultant personally ring me to say I must get a strong dose of antibiotics in me quickly so that just shows how busy they must be. Thank god I had checked because I could have ended up in hospital abroad.

Good luck and be firm. Let us know how you get on.

[Glynshem in reply to Patsy164]

Thanks Patsy, that is great advice and I appreciate it.... I hope you are doing well now with your condition and that it is under control. I will keep you posted.

Thanks

Glyn

[Patsy164 in reply to Glynshem]

After all this time it is under control. I’m immune to amoxicillin and I was on that for years until my sputum test showed that so I’m on ciprofloxacin now and that does the trick.

I hope you can get yourself sorted out, it’s miserable not being diagnosed, your gp not accepting the private health cares findings is frustrating. Take care

[Glynshem in reply to Patsy164]

Thank you

[NorthernGirl3]

You need to have a CT scan and should have been referred to a respiratory specialist before now. Sadly, the only way to get results sometimes is to be very determined. I'm not advocating you have a temper tantrum but it has worked for me!

[Glynshem]

Thank you, it's a shame it comes to that but I think that is my next step as it's getting really frustrating now.

[Mooka]

Hi Glynshem

That’s a shocking way to be treated. I don’t think many gps know about Bronchiectasis and so are not able to treat it. Bronchiectasis shows up on ct scan. You need to see a respiratory consultant who specialises in Bronchiectasis not all respiratory docs do. They should refer you to a respiratory physio who will teach you how to clear your lungs. If this is a problem for you at the moment you can search active breathing cycle on YouTube. It’s difficult when you feel so awful but you are going to have to be assertive with your doc. Might help to find out in advance the name of a consultant that can help you. Good luck.

[Honoria in reply to Mooka]

Thank you for your update. I too have Bronchiectasis but find it almost impossible to bring up mucus. I had an acapella but it did not work. I am doing nebuliser twice a day with gentamicin with a start of ventolyn but still can’t cough the stuff up easily.

[loriLKI]

I was told that CT scan is the absolute only thing to diagnose bronchiectasis. I was on inhalers for a couple of years until I finally got referred to see a chest specialist. Of course it wasn't asthma at all (I never thought it was) - but that ticks their first box! As for physio - I had 3-4 sessions where the physio taught me how to do breathing exercises to get the muck out of my lungs. I went from not being able to hold a conversation without coughing my lungs out to running 5-10-21-42km again. You can teach yourself - have you looked at this video? youtube.com/watch?v=kC-H8fF...(Not working as expected?)

I do those exercises daily for 10 min each side - lying on my side with a pillow under my hip to let gravity help getting the fluids out. At first you can't do them without coughing but keep going and eventually you'll be able to do them. If my lungs are particularly full I do this for 15-20 min each side. And I agree with previous comments - go to A&E and request CT Scan...

[Glynshem in reply to loriLKI]

Thank you for your advice, I really appreciate it and apologies for the late reply, I seem to have missed it for some reason.

I will give the exercises a try thank you. Prior to this I had always played sport but I now struggle so hopefully this will help. I can generally manage a slow 5k as long as the course or treadmill is flat..... For some reason as soon as I hit a hill, no matter how slight it wipes me out.

Thanks again

All the very best

Glyn

[Stepping]

You need to insist on a referral to a consultant. My Bronchiectasis was only diagnosed by a ct scan after 6 months of varying tests and treatment.

[Glynshem in reply to Stepping]

Thank you, I have been more forceful with my GP since receiving all of the excellent advice and he has now referred me to the chest clinic although I have not had an appointment yet!

Thanks again

Glyn

[Bella395]

Good news - hope that you get an appointment soon and that your consultant has a special interest (and experience) in bronchiectasis.