Feeling sorry for myself :(

[Mawc]

Hello everyone..I'm a newbie to HU so hope it's to post..I have been Asthmatic for 58 years (I'm 61) was always having attacks when I was young then in my late teens I totally changed my diet and stopped eating all dairy food..still had a good few attacks but all in all my health was much improved and my GP and I found the two inhalers that helped me most and I was able to control really well..Until 3yrs ago..I started finding it difficult to hold a conversation with people without nearly passing out and when I had a a really bad lung infection and my oxygen was so low the machine they use to check your oxygen would go haywire..they managed to sort me out with antibiotics atrovent and 100 percent oxygen..but I have hardly been infection free and was diagnosed with copd and bronchiectasis-along with the asthma..I have been in and out of hospital..my last admission was the beginning of July this year..it is now October and I have just finished my fifth different antibiotics and ten a day prednisolone on Monday and I can feel the infection beginning to get bad already..I am at my wits end and went into a real downer..I don't know much about this bronchiectasis other than they can't cure it and my lungs are really bad..I'm ok with that info that the consultant gave me..I prefer the brutal honesty from them..but that's about all the info they gave me...Im sorry for rambling on..but it's good to get it off my chest and if I can ask if any of you know a good site that gives info or if anyone has any tips how to cope with this I would really appreciate it..Thank you x Brend x

[Magpuss]

Hello Brend, I think you're in the right place here, I'm sorry I can't help you, Ive been diagnosed fairly recently with mild copd, but I'm sure that someone more knowledgeable than me will soon be replying to your post. In the meantime - take care. Magpuss.

[knitter]

Hi and welcome, I have asthma/ COPD and have just been prescribed ABs and steroids yet again for another chest infection.

But I am on a decreasing dose of prednisolone, so I don't get that shock of stopping suddenly....is that the same for you or have you gone from 10 a day on Monday to nothing. I am also on a maintenance dose as well as my inhalers.

If you live in the UK you can email or ring the BLF helpline for advice...03000 030 555..during office hours.

There are many people on this site with your condition, so hopefully they can help you better than I can.

Best wishes

[Mawc in reply to knitter]

Hi knitter..I just come straight of the steroids and don't have any problems..well so far..I think the docs just keep giving me a different antibiotic in the hope that one of them works..Thank you for your reply

[knitter in reply to Mawc]

Hi again, it's good that you can manage to drop the steroids so quickly .....were you taking 10 times 5mg tablets a day?

I have to gradually reduce mine .....I asked my consultant if I could be suffering from a rebound effect...he said it did happen to some people.

I also used to get very down when I stopped suddenly.

Have you had a sputum test so see which antibiotic works best for your infection?

Last time that I was in hospital, I was given IV antibiotics, and I also set the alarm off on the oxymeter.

I guess you are going back to your GP tomorrow if you feel the infection is still bad. See if you can leave a sputum sample then, otherwise it would have to wait until Monday to be tested.

Take care

[Mawc in reply to knitter]

Hi knitter..I was on a cocktail of antibiotics when I was in the hospital at the beginning of July..was only off them 4 days when the infection came back and after a visit to gp I was put on more abs..and from then until now I have been on six different types because the lab kept calling my gp an saying that I was to have a different kind because the culture was showing a different bug growing but they don't appear to be working either..but hay ho I just have to get on with it..Im off to bed now..stay well knitter

[Toci]

Hi and welcome. Sorry, bronch is not my 'thing' but there are other, very knowledgeable people on here who will be able to help when they see your post.

[Minushabens]

Hi & sorry you are struggling so badly.

Whilst this site is an excellent source of information, there is a specialist bronchiectasis website that has huge amounts of information about all aspects of the disease & the bugs that get into your lungs. It might be worth you having a look at. I got a lot of help there when the medics were first talking to me about it, although as time has moved on it's become apparent other things are a bigger problem so I don't go on there so much, but have a look.

bronchiectasis.info/

[Mawc in reply to Minushabens]

Thank you for your reply minushabens..I will definitely go on that site for a look..thank you so much for putting me in touch with it

[Minushabens in reply to Mawc]

You're welcome. There is great support out there on websites like that one and of course here so I hope you start to find some solutions.

[catherine54]

This site will..x

[catherine54]

This site will help ease your mind.x

[piggi]

This site will make you feel welcome too. I'm so sorry you're having such a hard time. I want to send you good wishes and online hugs x piggi

[Hidden]

Hello again Brend, some real experts on bronch here eg cofdrop & stillstanding. Look at this post & scroll down to cofdrop's long reply healthunlocked.com/blf/post... Don't come on every day but very willing to share knowledge & I bet wouldn't mind if you sent them a private message. Rob

[FarmerD]

Hi Brend,have you ever discussed going on Azithromycin?It,s an antibiotic we take three times a week.I,ve been on it nearly a year now and not had any infections,I have very severe emphysema and even managed to get my Fev1 up by 3% because I could exercise.Hope Things improve for you,take care. D.

[Mawc]

Thanks to everyone that has replied to my post and for the advice..It's much appreciated....Brend

[Hidden]

Hello Brend, I have longstanding bronchiectasis (63 years and still standing!) Wow,your list of symptoms, diagnoses and treatments sounds as though they really have no idea what is your main problem and have just thrown everything at you. The steroids and oxygen are more a COPD or Asthma treatment, of which I know very little. The main problem with bronchiectasis is gunk in the lungs and repeated chest infections. As you keep getting infections very soon after taking abs I would suggest that you tell your GP that you need to see your consultant. Importantly you need a proper diagnosis so that everybody knows what they are dealing with.

It seems to me that you may need specialised IV antibiotics to give the bugs a good clear out because oral abs are not finishing the job.

A test for aspergilla, a fungus which can get into damaged lungs and causes repeated infections. This is treated with antifungal drugs.

It is very important that you get the gunk out of your lungs every day. Any left in there will simply multiply the bacteria and keep causing infections.

If you have bronchiectasis and they can get you on an even keel it is then a matter of routine managemen, draining your lungs, exercise, eating properly, staying away from smoke and other peoples' germs- nag nag nag.

You will also need to keep an emergency pack of whichever ab they find is usually most effective for you, so that you can start them as soon as things slide.

I do hope this helps and that the confusion as to what you are dealing with is soon sorted out. xx

[Mawc in reply to Hidden]

Thanks stiilstanding..Sometimes I think im to blame because I come from an old Scottish mining family and if you tried for a day of school ma dad would say "no feeling weel ? I well you'll be feeling better the time you come hame" hahahaha I think I adopted that into adulthood and had to bde really ill before I stayed off work..my gp always tells me I'm my own worst enemy..

[Hidden in reply to Mawc]

That's so like the bronchiectasis personality. We keep going, sliding gently down the pole then it's 'oh dear, why I am I so ill?' By the way my Northumberland ancestors were miners. My grandad died in the mine when a steel pit prop hit him, my great grandad died of a mining related lung problem and my great great grandad was a platelayer on the mine railway and got run over by a train!

[knitter]

Hi Brend again, some good advice from still standing, I hope you get to see your consultant soon and get to the root of your problem.

I hope you can get to see your GP today, explain to the receptionist what's happening.

If you do live in the UK, contact the BLF helpline for advice, their website has information and leaflets too. It was their pamphlets which I found in hospital that I found very helpful in explaining what was going on in my lungs

[sassy59]

Hi Mawc and welcome, my husband Pete has steroids every day and if he has a chest infection he puts the steroid intake up but has to decrease slowly. Maybe not a good idea just to stop them altogether. Do contact the BLF helpline and I do wish you well. xxx

[Hidden]

Hi Brend nice to meet you and welcome to the site. I can't help I'm afraid as I have asthma and copd. I do know that doctors find it hard to distinguish between asthma and copd sometimes. Another good site is the NHS one. x

[Pentreath Volunteer]

Dear Mawc Plenty of good advice for you already but I wonder if your consultant has considered that with bronchiectasis you need a longer course of steroids. I have bronchiectasis and asthma and my consultant wrote to my GP to say that I needed two weeks on full dose then six days tapering off. When I was having five day courses it did not work and I was on a cycle of taking steroids for five days, getting worse, another five days etc. Now that it is a longer course it works. I have a rescue pack at home of steroids and anti-biotics too. Good luck and I hope the best way forward is sorted out for you.

[knitter in reply to Pentreath]

Hi pentreath, I am the same with oral steroids....I need to taper off , not stop suddenly.

[Mawc]

Hi..i'd like to thank everyone for the advice..I'm my own worse enemy..anyone asks how i am and my reply "och i'm fine" even the consultants in the hospital call me Mrs i'm Fine hahahahahahaha I had a doctor one day who i don't think was very clued up on Asthma and i thought i bet i v'e forgotten more about asthma than he knows about it..But hay ho feel a wee bit better today and waiting on my wee grandson coming to mine..grandkids keep me going

[cofdrop-UK]

Hi Mawk and a very warm welcome to you. 'Hey ho I just have to get on with it' WRONG - you have to be proactive and be your own advocate.

Sound advice as always from Stillstanding and your other new friends. IMO the best info on non cf bronchiectasis is chss.org.uk/documents/2013/...

I think you will it helpful.

At the risk of repeated what others have said I would say this:

Make sure you have a resp con who has a special interest in cf/bronchiectasis - they will also have good knowledge of copd and asthma.

Ask to be referred to a respiratory physio.

Ask if con thinks a prophylactic antibiotic (many folks here are on Azithromycin 1 Mon, Wed and Fri or 1 a day, or even some other antibiotic which is not used as a treatment. Azithromycin cuts down the inflammation and also works on the biofilms of gram neb bugs.

See if con thinks a mucus thinnier or nebulised saline will be of benefit to you.

Check if you can have sample pots, labels and MC&S forms from your GP so you can get a sample in as soon as an infection starts. The guidelines state you should start an antibiotic after submitting the sample but before the results and then change if a different ab is needed. So you will have to check, if you don't already, if you could have rescue abs at home.

Try not to browse the internet too much - there are some good sites but some rubbish ones too. Stick to reputable sites like this one and Bronchiectasis R Us which Minushabens mentioned. It was started and funded for far too long by a young woman from UK we all love to bits. The members are international and are so knowledgeable about bronch. I have been a member for a number of years.

I did things the opposite way round to you Mawk. I have had bronch since I was a baby but asthma later in life over the last few years.

Good luck

Love cx

[Mawc]

Thanks for replying cofdrop..I was put on carboceistine tabs and uniphyllin Which i was taken off when i was in the hosp in July..I have to say that the resp specialist nurse in local hosp has been more use to me than any con in the hosp..I have quite a lot of things wrong with me now *( Asthma Barretts oesophagus Osteo arthrisis Osteoperosis Scolliosis and now Bronchiectasis) so i must be a doctors nightmare..I think it was because these last 12or13 weeks got me down because i wasn't able to control it..and i didn't tell my son or daughter because i didn't want to go back into hosp..But i'm feeling a bit better today so all is good..Thanks for that web site address i will have a wee look at it..And no i dont trawl the internet looking to see what is wrong with me..and i'm always getting on to my daughter about that she has a headache goes on laptop and she has a brain tumour hahahahahahahaha But seriously i am gratefull to everyone on here for their support and advice XBrendX