what to do what to expect: seriously... - British Lung Foun...

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what to do what to expect

Dion3844o1 profile image

seriously fed up antibiotics again do they actually work NO for months and months and months I have infection after infection its not going away its not getting better iv had steroids once and they actually seamed ok but now my hope is going my ct scan is same scared but my lung function was a bit better this time so now I get told I'm been refered to a hospital that specializers in mctd/lung disease I don't think theres any hope I mean iv tried to be hopefull it aint got me no further ,imscared I'm worried I'm fed up just don't no what next

12 Replies

Hiya Dion, I've felt the same as you for almost three months and it hasn't been till my 5th lot of antibiotics and 4th lot of steroids that this horrible weight is starting to lift of my chest. I think it's getting the right antibiotics that's the trick the ones that suit you, I'm keeping the empty boxes of the antibiotics the hospital gave me on holiday cos there the ones that's worked for me, but I think to myself how come it's took a doctor who did not know me at all, never seen me before that he knew what antibiotics to give me straight away, he told me stronger for longer and they have started to work, I'm going to make sure I have some spare in the house incase this happens again soon, cos I just don't think I could take it again, as it's already effected my right lung too now. Apparently every time you get a chest infection the condition gets worse, nobody told me anything like this. Oh I wish I'd known a few months ago what I know now and I would not have put up with any of what I did. Make sure Dion that you tell them you don't want cheap antibiotics for one week, insist on at least two weeks supply of good strong ones and also tell them you want the mucus test sending to a hospital to be analysed, this is what friends from this group has advised me to do, and I'm going to make sure I do that from now on. I hope you get all the treatment you need to make you feel better soon, thinking of you. Xxx

Dion, after four infections in ten months I know how you feel! The third one started me on a downward spiral of depression - I spoke to the GP about it and he suggested "talking therapy". I've just finished a series of meetings with a psychotherapist, better understand what's happening and, when the forth exacerbation started I was able to get it under control earlier.

COPD is NOT just about the lungs but also about the brain - try asking the GP for some talking therapy .... I thought it would be all mumbo-jumbo or for crazy people ... then I found out what it's really about. Worth a try

Good luck and take care

Do make sure whoever is treating you takes a sample of your sputum for analysis so that they can prescribed the right antibiotic to target the infection with something that will work against it.

zube-UK profile image
zube-UK in reply to mrsmummy

Yes It's good advice, and a lab technician told me to get the sample to him as quickly as possible, he said do not store it overnight because many types of the bacteria die within a very few hours.

Some gp's receptionists do not know this, if the sample delivery has gone for that day then they just store it in a fridge overnight.

I had similar problem but I found a AB that the hospital gave me worked so I now have the instruction leaflet with me all the time and ask for them stating that they work! The stock AB that most GP's issue at the start do nothing for me.

Be Well

Hi Dion. I feel the same as you when I get an infection- antibiotics and steroids don't seem to work their magic. I saw 3 doctors in a week and the most helpful was one doing extended hours surgery on a Saturday. He was most helpful and informative and gave me a stronger antibiotic. Hang in there and pester if you're not happy. Get your sputum tested though where I am it takes a while for the results to come back.

I use to get infections all the time I was going to the hospital so much that the nurses were not sure if I had left. My doctor had almost given up in fact they did wanted to put me on hospice. Anyway they decided to put me on Daliresp and NAC. I haven't been back to the hospital for 19 months now. I have had to take two zip packs and two rounds of steroids short doses but I feel so much better. Don't know if it would help you or not but it sure did me. Had to use nebulizer a few times.

aw thankyou so much roessner541 I feel so much better now I'm glad it worked out for you and I hope it does for me I cant keep on like this I don't even think my chest dr realises how many infections I actually have as I don't see him much only my gp anyway take care thankyou.

My lung doctor usually handles my lung medicines. When I was in the hospital once they just decided to try the Daliresp as a last resort I had already been taking NA C which is over the counter in health food store.

thankyou everyone taking the time out to reply i also have bipolar and remember the dr saying he would have to be carefull of what im given as it can cause mood swings well im sure to god they cant get any worse of what im used to .

I've been their and done it.....but...and it's a big but....there is a way to break free. You have to decide if you are reinfecting yourself? It's so easy to do and so easy to stop. Your inhalers, how often do you clean them? The answer has to be every time you use it...otherwise you just put the infection straight back in yer gob and breath it in. To make it easy, I use two of the applicators....you know the plastic bits. Keep one back from an empty inhaler or Nick one of a new one. Plastic is hard to sterilise...so don't rely on boiling water, use something like Miltons. Never wipe them dry, just shake the moisture off and leave them on a sterile surface to air dry. Use a hand sanitiser all the time. If you consider money or a purse or your pocket. Germs don't live on shiny surfaces too long but most purses are lined with material....a little haven for bugs. Anyone that lives with you or visits you, get them to use your hand sanitiser. This is so they don't leave bugs about on items you might both touch. You have in fact, got to make yourself into an isolation ward...no need to stay in but keep that sanitiser working overtime....then get on and enjoy life.

zube-UK profile image
zube-UK in reply to CornishBrian

Don't forget your toothbrush !

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