Bronchiectasis advice sought

[Determineddebbie]

Hi... I've had X-ray results showing bronchiectisis and an on last day of amoxicillin and have go telephone consultation as still breathless and coughing mucus I'm having spirometry 15th Jan ... I'm new to all this and terrified54yrs non smoker

[Pentreath Volunteer]

Hi Debbie - welcome to our friendly site. Not sure that bronchiectasis can be diagnosed from an X-ray - it usually needs a high resolution CT scan. You may need to query this with your GP and ask to be referred to a consultant who specialises in non cystic fibrosis bronchiectasis. In the meantime it sounds as if you need more than amoxicillin, for example have you been prescribed any inhalers, and you need to be seen again, particularly as the Christmas/New Year breaks are coming up very soon. There are quite a number of us on the site who have bronchiectasis and you will find ways of managing it and being able to lead a good life. You could also phone and speak to one of the BLF nurses - click the red balloon at the top of the page and that will transfer you to the BLF website. They are really good and know a great deal about lung problems and how to cope with them. Please let us know how you get on and I do hope you are able to enjoy Christmas.

[moonatnight in reply to Pentreath]

Bronchiectasis cannot be diagnosed by Xray, regardless of how clever the doctor. As Pentreath says you need a CTscan so as to get a diagnosis.

Once diagnosed Amoxicillin is rarely successful and only at 500mg for two weeks. NICE recommends Doxicyclin for 14 days for Bronchiectasis infections.

Coughing up mucus is a good sign. Your body needs to get rid of it. If it is infected then getting a sputum sample to your GP for a path lab test to find out what the infection is would be best.

There are other lung problems with similar names. Is it possible that you miss heard? They come under COPD and are far more common than the much rarer Bronchiectasis.

HTH Debbie

[Determineddebbie in reply to Pentreath]

Thank you for taking the time to reply.my doctor prescribed a different antibiotic which I start tomorrow. He told me it could be from childhood?.. I have been on steroids for another condition and they aggravated my hiatus hernia and I inhaled stomach acid because that's when all this began.i have no idea how to breathe I just shallow breaths so as not to get dizzy coughing. I have spirometry on 15th Jan hopefully.

Hope you are well over Christmas holidays

[Kerrieblue]

Firstly, don't be terrified. I have had bronchiectasis since 1977 and I'm still here to complain!! This is a manageable condition, and with the correct help, you will get along fine. I do suggest you contact your GP before the long Christmas break as it sounds like you possibly need more antibiotics or a different kind. You could also suggest he give you an inhaler, which could be very helpful if you are breathless. After your spirometer tests you will know more, but take heart, you will be OK. Happy Christmas to you.

[Determineddebbie in reply to Kerrieblue]

Thank you so much for your kind support...I've been very tearful.spoke to gp and now have 2nd lot of antibiotics to start later today...I nearly black out whilst coughing but guess it's good to cough... got spirometry 15th January.

I wish you a very happy Christmas

[Hidden]

Hi Debbie,

I agree with Pentreath that you can lead a full and active life with bronchiectasis. Still going after 63 years with it.

However, for now. Bronchiectasis cannot be diagnosed by xray. It needs a ct scan and you need a consultant who specialises in bronch. They will tell your GP how to treat you. Unfortunately most GPs know very little about bronch. They typically give the wrong antibiotics in far too low doses for too short a time. You need your sputum tested because you may have a bug in there which is resistant to amoxicillin. In the mean time because it is Christmas ( gritted teeth) I suggest that you get back to your GP asap, see if you can get a sputum test fitted in and in the meantime another broad spectrum antibiotic in a high dose to hopefully knock it on the head over the holiday period.

At the same meeting tell your GP that you require a referral to a consultant specialising in bronch. Don't take no for an answer.

I hope that you get sorted out so that you can have a Happy Christmas.

[Determineddebbie in reply to Hidden]

Hi thank you for your support and good advice, my gp has prescribed another antibiotic to start later today . I asked him if he will refer me,he said I will have a ct scan , I have spirometry 1st on 15thjN had to wait 5 weeks for appointment... hope you enjoy a lovely Christmas too

[Hidden]

I just noticedthat you have a consultant and can call them! Great. So call them, bring them up to speed and I hope that they can give you the right antibiotic to get you going before Christmas. xx

[Determineddebbie in reply to Hidden]

I only have my gp on board at the moment but he did say he would refer me for a ct scann . I have spirometry on 15th Jan hopefully if get infection cleared up... got a different antibiotic to pick up today . Thank you so much for replying... I'm amazed at support... happy Christmas to you

[Hidden in reply to Determineddebbie]

I'm glad that you have a new antibiotic to go on with. Please don't let your GP wriggle out of referring you to a good consultant specialising in bronch. Everybody with bronch needs one. Look online and find one in your area and then go to see your doc armed with a name. .GPs do tend to think that they can handle bronch by themselves but unlike many cases of COPD they can't.

[Azure_Sky]

Sound advice given here, I agree, you need to phone the Consultant's secretary. Also see your doctor before Christmas. Talking to BLF is a good idea too.

[Determineddebbie in reply to Azure_Sky]

Thank you so much for good advice , I have new antibiotics to start today but have a long journey on motorway first ( incase I get a reaction) . I can't bear to cough as I get so dizzy and nearly pass out..it's good to be able to reach out ... I guess Blf is shut over Christmas. Wishing you a happy holidays and peace from difficulties

[Determineddebbie in reply to Azure_Sky]

Thank you ... I wish you happy Christmas

[Cateran]

Bronchiectasis is a specific condition which requires the specialist input recommended in this thread. Do connect asap with your consultant's secretary and the BLF talk line. Are there any bronchiectasis patients support groups in your neck of the woods? My group has been very helpful.

[Determineddebbie in reply to Cateran]

Hi , Thank you for taking the time to reply... I'm in the Cotswolds so will have to find other outlets in my area ... I think it will help not feeling alone in this ... I wish you happy Christmas

[Hidden in reply to Determineddebbie]

I attend the QE in Bham (30 years) and live in Stratford on Avon. When my consultant was ill I saw one of the consultants who said he has a patient in Glocoucester and that Gloucester hospital cooperated with him by giving that patient IVs at home ( not that you need those yet).

[Determineddebbie in reply to Hidden]

Gosh I feel like I've landed in Japan and having to speak the language... I'm sure I will pick it all up... out of necessity. Before all this I didn't give my heart or lungs a second thought ... how precious it all is now

[Carnival567 in reply to Determineddebbie]

I live in Forest of Dean and go to a brilliant consultant at Southmead in Bristol

[Determineddebbie in reply to Carnival567]

That's not too far from me.. I'm just outside Cirencester Gloucestershire... I will be picking your brains lol thank you for replying

[Carnival567 in reply to Determineddebbie]

His name is Dr Calvert and he is an expert in bronchiectasis and all things lung and a very nice man. I have only seen him once so far as we only moved here in May, but so far I have had another scan, chest x-ray, lung function tests and 6 minute walk test, also bronchoscopy. I only had ct scan and spirometry before at my last hospital. I see him again in March, although I am trying to get it sooner as it is the absolute limit of when he wanted to see me. Southmead is a brand new state of the art hospital on the north side of Bristol so easy to reach from Cirencester. We have to cross the Old Severn bridge, but no problem as I have blue badge.

[Determineddebbie in reply to Carnival567]

Is he private or NHS ? I think it's half the battle won if you get a good consultant. How long have you been diagnosed if you don't mind me asking and thank you so much for his name , maybe I could request him?

[Determineddebbie in reply to Carnival567]

I've just looked up south mead it's 41miles so that's doable thanks

[Carnival567 in reply to Determineddebbie]

NHS. I was referred in May and had my first clinic appointmen in September when I saw his registrar who ordered all the tests. I have what they call a complex medical history as I also have congenital heart disease for which I am also seeing a consultant at Southmead.

I was dxd with bronchiectasis in 2013 but have certainly had it a lot longer, probably since childhood, but any breathlessness put down to heart problems which were dxd in1961. Bronco probably caused by all those childhood illnesses which before immunisation were so rife. I have now also been dxd with emphysema and bronchiolitis obliterans so I seem to be collecting ailments. No O2 yet but I do get quite breathless on exertion and am having a review with the specialist nurse in January. Fortunately I have a lovely husband and we came here to be near our younger son and family, with 2 year old grandson who keeps us on our toes! Just about an hour from Cirencester to Southmead.

[Determineddebbie in reply to Carnival567]

Awe maybe meet up in the summer when I can get my head around all this .thank you for your friendship... enjoy your family

[Carnival567 in reply to Determineddebbie]

Thanks happy Christmas and try not to worry

[O2Trees]

Good luck Debbie. I can't add anything to the replies you've had which are excellent. I was diagnosed with bronch (in addition to copd and asthma) at 69 and it hasn't been dreadful, just something to manage. I understand why you're scared but you will be ok. Take care

[Determineddebbie in reply to O2Trees]

Thank you so much... fear is contradictory to my faith but I'm only 54yrs and have a 13yr old ... dr has given me a 2nd different antibiotic to start later today so hopefully will shift infection... I wish you happy Christmas

[O2Trees in reply to Determineddebbie]

You too Debbie