Life long asthma and bronchiectasis

Hi I'm Jane. I'm 65 years old and have had severe asthma since a baby. I am currently taking Uniphyllin, 20 mg prednisolne, forstair, spiriiva and salbutamol inhalers . I'm feeling a bit down at the moment as I have just had a CT scan which shows that I also have significant bronchiectasis. This is the result of whooping cough as a child and pneumonia. The damage is irreversible.

I have always had a positive outlook on life but feel a bit defeated now. Any advice on how to cope would be appreciated. Jane xxx

11 Replies

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  • I was diagnosed with bronchiectasis 15 years ago. Whilst it may lead to an increase in infections, it's not the end of being to enjoy life. You've probably had it for years, without it being diagnosed, so now you know, carry on as before you knew. Use to cycle upto 80 miles a week, with it, until, knees and hips forced me to stop 3 years ago. Treat it with distinctive.

  • Damn predictive spelling. Last word should be DISTAIN

  • Hi just realised that I failed to thank you for your kind note. You are right I have had it for a long time and now that I know what is what cancater for it in the right way. I sympathise with the knees problem. I love ice skating but have to take care as the last time I fell I couldn't get up from the centre of the ice. Crawled on my hands and knees to the edge to haul myself up! So embarrassing!

  • Just keep going as you have always done. Be aware of your peak flow and note any drops so that you can up your inhalers and/or get medication when needed. Any diagnosis of something new is a bit of a blow but I always ask myself - well do I feel different from yesterday when I didn't know. How long have I had this? Maybe years. You are still the person you were before you knew about your bronchectasis and can do all the things you always have done so long as you take care - as always.

    Sending you hugs

    Sian

    Xoxoxoxo

  • Hi Freefaller. Thanks for your kind and sensible advice. I have been in hospital for 10 days which is why I have not replied sooner. My peak flow suddenly dropped from 300 to 200 about 2 months ago and my drugs were not helping. Specialist states it is because an airway is now plugged. Getting lots of help now which includes physio so feeling much more positive.

    Lots of love Jane x

  • i can't help but i will support you and hope someone can help you have had it rough my heart goes out to you take care bigalan

  • Hi Big Alan,

    Many thanks for your lovely note. As you can see from my replies to others I have been in hospital hence the delay in thanking you. After reading about your fantastic weight loss help on how to achieve this would by great. As I got more and more breathless over the last few months I began to confort eat and put 2 stones on. This is not good and so I am trying to diet.

    Congrats on your achievements. Lots of love Jane xxxx

  • hi Jane many thanks for your reply i hope your better from being in hospital i hope it wasn't a major problem you have. yes the long road from 2008 to now its been an uphill battle but worth every step of the way, and that was my biggest problem comfort eating and at my weigh in i've put some weight back on because of the depressed state i've been in over these last couple of weeks since my last weight in. i'm on the slim-fast diet which you can download the help sheet or printer it of to help you. will take care Jane its been lovely to meet you if you know what i mean take care love to you Jane and hope you 2 stone soon will be gone kindest regards Alan xxxx

  • Hi Jane,

    Im sorry about your diagnosis and it is hard to deal with rubbish news sometimes. I have had asthma all my life and got told I have bronchiectasis last year and like you it has irreversibly damaged part of my lungs and Im only 29 so when I got told that I was devastated and was for a while I thought it was the end of the world. But after a wee while I was kind of glad in a way to have the diagnosis because it gave a reason to why I was so ill all the time and it was not just my asthma causing problems. At least there was a different way to approach it and control it which for me is rotating antibiotics monthly and also doing chest physio to make sure I don't get any infection settling!! It has been hard but it is getting there.

    Have you got a good support network? I have had ups and downs with my medical team but have now been honest with them how I feel and they are really supportive now and know my goals and help me do that. My family are also good too. I clash with them a bit as they don't understand I still want to live life and they do get annoyed if I do something and end up ill as obviously they don't want me to be ill.

    I hope your ok. Its not the end of the world having bronchiectasis and asthma but do shout if you have any problems!

    JustTux

  • Hi just tux

    Many thanks for your supportive message. My specialist put me on Uniphyllin to supplement the preds etc and it seemed to be improving the asthma but I noticed I was still breathless and nothing improved it. That's when I got the second diagnosis. Like you I was pleased to get a diagnosis and the support. The NHS have always been brilliant. My nurse suggested getting a flutter to help clear out mucous and showed me how to use it. It does seem to work.

    My initial post came from shock and a touch of the "poor Jane" on the day of the scan results! As you say it is not the end of the world. My family are caring too but since a child and even now they want to wrap me in cotton wool. Don't do that it might make you poorly etc. The well / unwell rollercoaster that is the life of the severe asthmatic is the thing that I have found most difficult to deal with. Making the most of the good days is so important, to live life as you say so keep it up.

    Thank you so much for writing. Take care!

    Jane xx

  • Can totally relate to that. I have had poor me moments etc and every new thing that comes along you think what else is my body going to throw at me- have I not got enough going on already!!!

    My family and friends are similar as well if I try to do something they frown at me and question if I should really be doing it but if I didn't do half the stuff I do that may potentially make me worse then I would be sitting on a sofa or in bed all the time and I am not ready to do that!!!

    I used to have a flutter but it broke so I now have an acapella device which basically does the same thing. I also have a PEP device for my nebuliser which is handy.

    Hope your ok

    JustTux

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