bronchiectasis advice

[Clairexx2]

Hi there i am new here and was looking to chat to others with similar symptoms/diagnosis as me to be able to find out how you all deal with life now.

Back in 2012 i started off with a persistant cough after inhalers and antibiotics not working my breathing started to go and was rushed into hospital in which i was in for 7 weeks, different tests, x rays, ct scans, lung biopsy etc. I was a "mystery" and apparently still am! when i was discharged they was treating it as organising pneumonia. about 2 months later things flared up again. i have been up and down since then mostly in the winter months with infections etc. In Aug last year 2017 my consultant told me i had now developed bronchiectasis and since then my breathing has not been right as in i find it difficult to even walk around the house and do general housework. i also have a little girl who is coming up to 3 years old. I was admitted to hospital start of last month or 10 days for IV antibiotics but breathing has not changed so i am not currently back in for more IV antibiotics :(.

Please can anyone tell me how they deal with home life etc?.......i was self employed running a beauty business from home but feel i need to give this up for now. Do many people work with this condition?

I have been advised to apply for PIP also (like disability allowance) do many of you get awarded this?

SORRY for the long message i am just confused and feel abit lonely regarding this situation.

[Clairexx2]

Also i forgot to mention i am 29 years old and wondered if there is many of us around this age as everything i have read is more older people?

[CEC47]

This is me as well get you down doesn't it?

[Clairexx2 in reply to CEC47]

yes it really does. I just feel anxious and depressed about how my life is going to be like from now on. How long have you been suffering with your lung problems? how old are you and how are you coping with everyday life?

[Hidden]

Hi Claire, yes, you and your doctors are a mystery to me. I am 67 and have had bronchiectasis all of my life. I had a normal education, raised two children, was a beauty therapist, disc jockey, helped my husband run an international company and still do plenty. When the bugs in the fluid which collects in my damaged lungs get out of hand I produce a lot of coloured mucus and feel very unwell. When this is happening my breathing is naturally not good but in between I don’t have the breathing problems that you are talking about. The main signs of bronch are the production of this mucus alongside a cough. When I don’t have an exacerbation I tend not to cough. They seem to have been treating you for possible infections (exacerbations) with the IV antibiotics which is good, but given your symptoms it is my gut feeling that they are missing something. Bronchiectasis can come about because the lungs and airways get damaged by some other condition. I suggest that you get your consultant to look for some other, underlying cause for your cough and breathing problems.

Of course, it could also be that at this early stage you have not been helped to manage the condition by getting rid of the mucus and this in your lungs could be making you breathless and causing the bugs to have a party. Something to think about. I hope they get to the bottom of it so that you can live a full life and enjoy your little girl.

[Clairexx2 in reply to Hidden]

Thank you for replying little pom

The consultants also think there must be something else ongoing not just infection but they are not having any luck in finding out what this is

It is good to know that you have had successful life at least it gives me abit of hope lol! i do worry about my breathing though and wonder whether antibiotics will make this improve.

[Hidden in reply to Clairexx2]

You will be fine once they find what is going on, the right abs and you start to manage it. To be honest it has just been part of my life and hasn't stopped me doing anything my friends did. I am slowing up now because my heart decided to pack up 5 years ago. Not because of the bronch.when it isn't being handled properly every step can feel like a mile and so I do hope that things look up for you soon.

[Clairexx2]

thank you for your reassurance and sorry to hear your also having heart problems. take care x

[cofdrop-UK]

Hi Claire

Sorry to hear of your struggles. Have you had a test for cf or seen an immunlogist. You will probably feel much better when thet get you on a good management plan.

I have had bronchiectasis since babyhood but didn't have a decent education as I spent lots of my childhood in hospital and teaching in, certainly my hospital, was very poor (but that was a long time ago and things have changed so much). I did have normal teenage years, married, had a daughter. Divorced when my daughter was 6 and brought her up on my own, with a lot of imput from my Mum and my sister. Worked etc. I have more recently other health issues - asthma, arthritis and IBS.

So yes there is life with bronch. You will find yourself what you can manage but I wouldn't make any rash decisions until you know exactly what you are dealing with and how well it will be managed.

With regard to PIP. It is not means tested so you can claim if in work or not in work. It is not dependent on the condition you have but how the condition effects the care and/or mobility you need.

love cx

[Clairexx2 in reply to cofdrop-UK]

Hi C

Thank you for your reply

I have been tested in the past for CF and also auto immune disorders but nothing.

Does your bronchiectasis affect tour breathing aswell or just coughing etc. How often do u get infections? X

[cofdrop-UK in reply to Clairexx2]

I always cough at some time or other during the day and night, not usually coughing fits though, as I am very vigilant with nebulising and lung clearance - twice a day. My breathing is poor due to asthma. I have frequesnt infections. All this sounds abit grim, but there are reasons why things are problematic for my cons and myself as a team to control. I am intolerant to so many antibiotics and inhalers. If I could take a prophylactic antibiotic eg. Azithromycin and/or could tolerate nebulised Colomycin or Tobramycin, then I believe my infections would be very much reduced and my asthma more controlled.

We are all different and I would not go by the way my BE presents. Once they get you sorted out, I am sure your consultants will find a beneficial treatment regime which will improve your health and wellbeing. Prophylactic abs and nebulised abs are very beneficial to lots of people with BE.

love cx