Hi , I'm 47 years old , I've got moderate bronchiectais , diognosed couple of years ago , though I have had repeated lung infections

Throughout my earlier years etc , been through the mill as expect many on here have . Im on host of medications , nebuliser for bad asthma , past two years on mucoclear 6% and every other day antibiotic ,I swim 3 times a week and do a regular walk on one day , work term time 35 hours week .i consider myself to be doing remarkably well , though my family say I look tired at end of day and fall asleep at 9pm :)) anyway I'm babbling , thing is when I had my respiratory review this week I was disappointed and surprised that my lung function has fallen repeatedly every year , and down from 67 to 63 percent in a year , and yet I've had what I considered my best year health wise ?! Is this the norm with bronchectasis and acute asthma ? I'm a posative person and not a doom merchant , just surprised .

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  • warm welcome,i don't have that ,but members on hear some do,keep chekin in,others will be along and give u advice and guidance,u can ring blf up,red balloon at top corner there number,open 5 days week 10am start,dont worry,

  • Thanks

  • flibberti, You're a mine of information! good advice. Mic

  • Ive probably had bronchectasis long time also , I had peanut extraction and part lobe moved in right lung I'm told when aged 4 , drs go through notes and surprising what we learn , lung scaring as expected , 15 years ago I had pnumonia and lung clot so I'm a survivor ! Im a enjoy life character,I've been under thoracic medicine at hospital but was discharged as outpatient over year ago , as I seemed to be infection free and on all meds possible .ive not had lung infection for a year , this is a miracle for me but a god sign ! Though it confused me why my lung capacity decreases yearly when I do everything to keep fit .i do my own airways clearence at home with my flutter device after salt inhalation , Allergy test I've had indicate I have hayfever , though this surprised me .i carry spare antibiotics and prednisolone on me in case I have flare up .fibberti do you like I get daily 'lung throbs /stabbing pains ? I'm not worried , but it's probably good to talk to people on here who can advise .thankyou

  • Thank you fibberti for your guidance , it's good to talk and understand condition .yes I knew it was called non cf bronchiectasis , I feel I'm a victim nhs cutbacks to be honest and I don't want be deemed a nuisance by them and insist I see regular consultant , they said if I ever feel quite I'll again to go in thoracic straight away .x

  • Our f is quite right you defo need to be monitored on a regular basis by a respiratory consultant with a special interest in cf/bronchiectas. Forget not wanting to be deemed a nuisance - it is normal practice that you are reviewed by a named consultant, although of course on occasions you will be seen by their reg, but you really need to get referred hun.

    cx

  • I did think once or twice a year seeing a consultant would of been kinder , perhaps I shall book a gp apointment and discuss why lung function tests decreasing over past few years ,as if this form continues I'm going to be suffering noticeably .x ally

  • Hi Roversally

    A very warm welcome to you though sorry you have bronch. Had non cf bronch since babyhood and more recently asthma. It never ceases to surprise me when I feel really rough my peak flows and spirometry can be fine. On the other hand I can sometimes feel fine but this is not reflected in my results!!!!!! I will always get a slight improvement when I have had a birthday ('cos it's expected to be lower in calculations because I am a year older), likewise that improvement levels out when I am near my next birthday - hope that makes sense!

    I think flibberti has covered most of the bronchi stuff.

    Did they not discuss with you why your predicteds had fallen 4% in a year. I treat spirometry a bit like horoscopes - if there good I am delighted, if there not so good I think it's just a number. However if the downward trend was constant I would be asking consultant why.

    With good wishes

    love cx

  • Once twice a year to see lung doc ..

    Am peved am not seeing him till november a lot can happen in a week when you have lung problems

    If hospital dont call me a go to them .. Its not like thay can beat you up plus there is cake tea shop and always somthing to read

    I had my Old GP say its not all about me

    So who is it all about then but he would not put it in writing

  • Have I understood your post right Daz. You turn up at a possibly full hospital clinic without an appointment, where they don't have your notes to hand. Is that what you do?

    love cx

  • No by definition am outpatient who as not been discharged by my lung specilist .. So yes am quite right in attending lung clinic if and needs be but yes you have to see receptionist in order to inform doctor of your attendance twice my GP has refused me antibiotics that i have had to get from my lung doc

  • GP doesn't sound much cop daz.

    love cx

  • Daz does your doctor give you spare emergency antibiotics nd prednisolone to carry Incase ? I'm under impression this is the norm .i try to be calm and not let condition stress me out as this can make me worse .do take care x

  • Hi my old GP was not intrested .. But ye my new GP did give me antibiotics only after my lung doc sent them letter but striode pills been on twice now first five minutes of taking steroid pills felt like running a marathon but that soon worn off

  • DAz, I asked my GP if steroid pills can make you hyperactive. She said, in children yes. I had asked this because when I took a course, my heart was beating faster and so my breathing. As you say, it was like running a marathon. I know they do me good, by enabling me to breathe better.

    Lately, I found that nebulised Combivent, then normal saline works too.

  • Quite right daz! After we are the patients. The NHS is to attempt to make patients better. I thought doctors are there to help you. Of course, there's a certain amount you can do yourself.

    But GPs, consultants, pulmonary nurses and physio are there to help you. So Roversally I would not hesitate to go to your GP for a referral to your consultant and to ask him to have another review because you fear you have deteriorated. They are the experts to give the explanations. (I think they're paid fairly well for this too!)

  • Hello helingmic ,last year I only had one chest infection and used my spare emergency antibiotics and took extra steroid inhaler puffs ( hate prednisolone less necessary ) so thus it was a very good year health wise .. I thought anyway , I considered the salt nebules and arithmoyacin antibiotic (alternate days in winter ) to be working wonders , but then three years on run it seems my spirometer lung capacity down , so im looking at situation as last three spirometer tests can't lie.. I was under impression if infection free I should be gratefull x

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