I am asthmatic (chronic) and have bronchiectasis. I exercise 40 minutes every day, do one hour lung clearance every day plus acbt, don’t smoke, and eat healthily. I take Vitamins D and B12. I am on carbocistene and azithromycin three times a week, plus inhalers and others allergy meds. Despite all of this I am still struggling. My infections are 8 weekly and I take my ventolin between 5-8 times a day so there is no control in my asthma. I am feeling very frustrated and frankly lost (emotional) at what to do next. It’s very likely that I will need to go back to full time employment soon and I just don’t know how I can with how I am right now (who in their right mind would give me a job). Does anyone have any advice please on what I can do to help myself in any way. I see my consultant every six months but they are doing all they can at the moment especially in the current climate. I really just need to know if I am missing something I should be doing please. I am planning to call BLF too but just checking here first. Thank you.
What can I do to help myself please? - Lung Conditions C...
What can I do to help myself please?
I should also have said that I don’t eat any dairy at all as I’m allergic x
Do try learning to sing using the diaphragm. There are plenty of videos on You Tube. I bought some singing exercises from Kim Chandler which I use in my singing group - you would probably only need the first CD.
Singing will strengthen the lungs and other muscles, help with mucus clearance, and release endorphins in your body which will help you feel happier. Lots of research has shown the many benefits of singing. And don't worry that you might not have a good enough voice. You don't need a good voice to enjoy singing and reap the benefits.
Wishing you all the best.
Thank you Ergendl - will look into that and give it a try - many thanks x
Singing along to your radio is a good starting point but the singing exercises realy do help
Can’t really help, just offering you love and virtual hugs
Kate xx
Thank you x
Are you able to contact your physiotherapist for some advice?
I'm so sorry for your plight. Is this something you have experienced for a while or is it something new? If it's new I would contact your consultant via secretary for advice.
Chrys
Hi Chrys - Thank you. It's been ongoing for last 5 years unfortunately but just not improving with any meds etc. Bronch diagnosis was 2 years ago after major bleed - in a way that was good as it got me the referral I needed to the hospital - but the new drugs don't seem to have changed things yet unfortunately - maybe I just need to give it more time. x
Hidden is very knowledgeable and hopefully she will come in. x
My husband has similar problems. Consultant emphasised the need to take the right antibiotics at first sign of trouble, with sample into lab as soon as poss to check it’s the right ab.
Since we’ve moved house, we’ve had to work very hard with new surgery to get them into same protocol...suspect too many samples went to lab too late, or maybe into the bin.
After a sympathetic locum and a run of six different ab’s/steroids for the three months round Christmas, we think the message is home. He had telephone appt with GP at start of this lockdown, who assured him that his sample would be accepted at the door, don’t go in, and sent to lab promptly, despite current problems. So far so good, though fingers remain crossed. Thought this info might just help.
We’ve had to persist and persist. Littlepom will tell you that, I think. Good luck 🙂
Please ring the BLF they will give you some good advice, have a lovely day and stay safe 😊 Bernadette xx 🌈
Thank you Bernadette I will do. x
Thanks Yatsy. I am being checked with samples at the moment as had colonisation last year and they want to see if it's gone. Sent a sample last month but just have to wait. Unfortunately at the moment it means I have to be clinically assessed every time I get a flare/infection before I can get antibiotics which is frustrating (last year I had them on standby at home but due to a recent change in meds due to the colonisation I'm no longer able to). I understand why but it makes me feel like I have no control as the surgery want to do bloods etc and wait for results first to be sure it is infection which takes 2-3 days. And bloods don't always seem to show the infection until it gets very bad. My consultant at the hospital is lovely and very good so I do trust them - it's just a rubbish situation really.
Glad to hear things are better for your husband - hope it continues that way. x
Maybe this will give some helpful tips LizzieWizz
bronchiectasisnewstoday.com...
Thank you - I will try these x
The Gods must be watching - just had a call from my surgery to say I can keep a rescue pack at home again - it’s crazy how relieved that makes me feel. Doesn’t change my situation in terms of not improving but at least I feel I have a little control over helping myself get better when infected and avoiding any delay. Very thankful. Now to just work on the rest of it. I’ve just purchased a book called “Bronchiectasis - how I turned my life around in a year” - fingers crossed there will be a hidden gem in there - will keep you posted.
Hi LizzieWizz, I have the same condition as yourself - asthma, which has now developed into bronchiectasis. I take carbocisteine (2 capsules twice a day) and 1 azithromycin capsule a day. I used to take two inhalers - Seretide 500 and Spiriva capsules every day as well, but my doctor replaced them both with just 1 inhaler instead, called Trelegy Ellipta, of which I only have to take 1 puff every morning. I find it very effective. My Sabutamol was also replaced by another inhaler called Easyhaler, which is my reliever one, and again only 1 puff as and when required - there is a demonstration of how to use it on You Tube, or you can just type Easyhaler into a search engine. I suggest you ask your consultant/doctor about these, as it may be a lot easier for you. they've certainly helped me. Hope this helps.
Thank you Optim278 - I will look into those x
It does seem you are doing the right things with regard to your bronchiectasis. You don’t say what bacteria you are colonised with.
I am pleased you have had your meds reinstated and am assuming that is because of the present situation.
You might want to contact your GP or consultant about your asthma not being under control.
Wish you well.
Love cx
Thank you cofdrop - the GP already knows - had review recently and they said they were sorry it was so bad and hopefully the hospital would get on top of it soon. The hospital bless them have been brilliant too but I think they have enough to deal with at the moment so I think I’ll probably need to carry on as I am until the world situation normalises and just keep fingers crossed I don’t catch Covid in the meantime. I’m sure it will all be fine. I was just wondering if I’d missed any techniques etc that might help us all. Thanks again xx
Sorry forgot to say colonisation was haemophilus. x
If you recently had a review I can’t understand why they didn’t review your medication for your asthma then or indeed why they can’t do it now. HI is a pain in the bum but at least that side of it is covered with your home meds.
Good luck
Cx
Unfortunately when we had my review my husband and I were both ill and at that point our concern was whether what I had was an infection/exacerbation or Covid-19. So our discussion was based around that and what would happen either way and what I needed to do. I probably should have discussed the asthma too but the worry over the situation in hand at the time was more pressing. It turned out it was an exacerbation in the end. What is HI by the way? x
So glad it wasn’t corona LizzieWizz. Apologies for short form - HI is haemophilus influenzae.
Love cx
Hello LizzieWizz. I am also new to all this too.with severe obstruction copd. As people have said singing helps i love singing along to my favourite songs and artists. You could start with Captain Tom and Michael Balls Song You,ll Never Walk Alone. Find it an uplifting and emotional song. I do hope you get some help to feel better. And find it disgusting that you are still having to think about working while you are trying to cope with your illness. You are doing everything you can to help yourself. Take Care. Brian
Hi Brian. Thank you I appreciate your thoughts- unfortunately it will be a case of no choice I fear with the work. I will discuss that part with the Consultant when I see them again in six months but I don’t think there will be much they can do to help with that side - it’s the age old thing of too ill to work properly but not I’ll enough to be able to claim - which I suspect a lot of us fall into. I don’t mind doing it - I just worry that I’ll keep going off sick etc. Fingers crossed it will all come right. I do sing a bit - normally when I do my exercise at home as I have my headphones on - not sure if that counts though! Wish you well x
Try to keep well. Its sickens me when this goverment seem to class everyone fit for work who can breath. Its in human Take Care
I didn't see which inhalers you're on- maybe a change to MART (combined inhaler)if you're not on one. I'm so much better since changing to FOSTAIRNEXTHALER though it doesn't suit everyone Anita x
Hi Anita. I used to be on a combination inhaler but switched about 18 months ago to Flutiform (beta atagonist I think?) due to this problem. It has made a small improvement compared to the other inhaler. My rescue inhaler is Ventolin. x
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