Just diagnosed and need information

Posted , 10 users are following.

Hi, I've only just had a diagnosis that I have this and have been trying to find out about it. I have never suffered with any kind of chest infections and nor had bad coughs until two years ago when I had penumonia, which was slow resolving.  At first my G.P. kept telling me I hadn't got a chest infection, although I felt so ill. Eventually after me pestering my doctor I was sent for a chest x-ray and it came back that I had pneumonia and given antibiotics.  After 10 days treatment still felt dreadful so antibiotics were swopped for something different.  All in all I had four lots of antibiotics as the penumonia was slow resolving.  Ending up having a CT scan and bronchoscopy which showed I had lung nodules which weren't cancerous.  I was discharged by consultant from his clinic without any mention it could be anything other than penumonia. Less than a year later I was going through the same thing again. G.P. saying no infection and no treatment given for it to be diagnosed as pneumonia again! Resulted in me seeing a different consultant who said he would see me every six months for a check up.  After resent visit I complained that I was constantly coughing up phlegm, yellow/greenish but only small amounts but I felt I needed to get rid of it but I couldn't.  Just had another bronchoscopy a few weeks ago and was not told what they had found other than I had a lot of scar tissue from previous infections. It was my GP who told me that I have bronchiectasis.  Since bronchoscopy have been really ill again, had antibiotics and then steroids. Waiting for consultant to see me again but in the mean time have been trying to find out what I can.  I have found something online about Salt Cave Therapy. I'm willing to give it a go, anything would be better than all the side effects of the antibiotics. Has anyone heard of this, or indeed tried it or anything else that is helpful I'd be grateful to hear what fellow sufferers think.

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  • Posted

    Lainie, the antibiotics and steroids, whether inhaled or ingested, treat different things. Mucolytics, sodium chloride nebulizers and salt pipes, etc., treat yet other things. We're not doctors so we can't possibly tell you what's best for you. I use 3 neb meds several times daily and one inhaler. On doc's orders i also take 1200mg twice daily of Mucus Relief, the same thing as plain muconex but dirt cheap rather than super expensive. I have a separate disease which makes my phlegm much thicker, more difficult to get out.

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    • Posted

      Thank you for your reply. I'm just reviewing what others are using or have used and what worked for them. I want to find out as much as I can before seeing my consultant again.

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  • Posted

    I'm sorry but I can't say that I think too highly of the first GP you saw for a few years who kept saying that you did not have a lung infection. I kind of went through the same thing but not nearly as long as you have. I went through two courses of antibiotics but I did not see the doctor for them she just called them out to me because I told her I had a chest infection. But when I did finally get in to see her I was complaining about a chronic cough and she said that my lungs sounded clear. She also said that she thought it was probably just allergies and I believed her. It made perfect sense. Then I had my annual visit to my pulmonologist (I have asthma) and I told her that I had a chronic cough. She listened to my lungs and said they sounded clear and agreed with my GP that it was probably allergies. But she said she wanted to do a chest x-ray just to be sure. So I get a chest x-ray and she sees a little something on it. She says it's probably nothing but she wants to rule anything out so she orders a CT. The CT shows I have bronchiectasis. Then I have a bronchial scope done which shows that I have a lot of mucus and infection. I had the bronchial scope about 2 months ago and I am on my second round of antibiotics. I'm already taking Prednisone for another condition I have. I can't hardly get anything up. I think that's probably the most frustrating thing about this condition. Well that and I can't get information from my doctor.

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    • Posted

      I didn't think much of GP either when I knew how ill I felt and what happened afterwards.I was told the same as you, that my lungs sounded clear.  Needless to say I haven't seen her since! I am trying to get my next clinic appointment brought forward so I can get the results of the bronchoscopy from the consultant as he didn't explain anything to me after the test. 

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    • Posted

      It is so frustrating when the doctor will not explain the test that you had. Here in the US since we pay for the tests we can demand the results whether they like it or not. I don't know if that's the same in the U K where your taxes pay your medical bills.

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  • Posted

    Hi Lainie,

    From what I have read, this salt cave therapy is not very powerful and probably would not be enough to take care of your symptoms.  But I haven't tried it and maybe some others have.  I take a 7% saline solution in a nebulizer twice a day.  And that helps to get mucus out and has a cleansing effect.  Still I get an infection once or twice a year and sometimes my symptoms get bad when there is no infection.  My pulmonologist wants to prescribe a few months of amoxicillin to prevent these flare-ups.  He says that would keep the inflammation down.  But I do not feel good on antibiotics because of stomach issues and other side effects so I may hold off for the time being and try and find some natural anti-inflammatories.

    I hope you find a way to stabilize with the bronchectasis.

    Louise 

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    • Posted

      Than you Louise for your reply. I'm not very good with antibiotics either as seem to get loads of the bad side effects. Also I'm allergic to pencillin so that's a no-no. Will just have to wait to see what my consultant can tell me about what they can offer.

       

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  • Posted

    Hi there as many others have said it took three xrays and a scan to find out I had BX. I'd had a terrible cough and producing an awful lot of mucus for over a year. I was very worried that it was something bad, as it goes BX is one of those things that we have to live with as best we can. I find that doing the ACBT exercise twice daily helps.

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  • Posted

    Hi there

    When you find out you have bronchiectasis it can be daunting but as long as you exercise and take the necessary medication you can keep it under control. You will have times that are worse than others but the key is to have a good consultant/doctor etc. When you feel you have an infection or you feel poorly it's important to send a sputum sample off. To keep the mucus off your lungs you can take Carbosistine which is in tablet form. You can also buy a salt pipe or you can use hypertonic saline which is administered through a neb. What country are you living in?

    Rachel

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    • Posted

      Hi Rachel, Thanks for your reply. You're right it is daunting and I wish I'd been told what it all means by my consultant.  I feel I'm in limbo until I see him again.I'm in the U.K.

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  • Posted

    Sorry you've had a really rough time. Sounds like the medical attention you got was far from satisfactory. When you finally get to see the consultant again you perhaps should ask for referral to a respiratory physiotherapist (who will be able to train you in techniques designed to help clear your lungs) and also to ask about other treatments available - for example having a home nebuliser (I bought one online but I think you can get them on prescription) and the various 'flutter' devices that lots of people with bronchX find helpful. Many sufferers get a lot of relief from symptoms by taking the prophylactic Azithromycin. I know what you mean about being wary of taking too many antibiotics - of course sometimes they're simply necessary but, in my own case, I've found that keeping physically fit (plus eating well, not smoking....all the usual stuff!) can really help keep chest infections and/or pneumonia at bay and keep the bronchX under control to a considerable extent. But first of all you need professional support to help you get on top of the condition, and I do hope you start to receive better treatment than you have up to now.

    Wishing you well, and big improvements in your health and with dealing with bronchX.

    Sally

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    • Posted

      Thank you Sally.  Like I replied to Rachel previously, I feel in limbo until my next consultant appointment.  Hopefully I will go armed with questions to ask about this illness, as I'd never heard ot it before.

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  • Posted

    Hi Lainie,

    I asked my consultant about salt cave therapy, she said the salt can irritate the lungs...so I didn't pursue it any further.

    One of the places I've found a lot of useful information is on the British Lung Foundation website. 

    Don't feel you're ever alone...we're all here with the same issues. 

    Janet   

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