End of my tether coming up

I am 73 and have been asthmatic since I was 5. Until 4 years ago I've lived a normal life with asthma controlled, but was diagnosed with bronchiectasis a couple of years ago. After a really good year, health wise, in February I got an infection and started on my emergency pack of Antibiotics and prednisolone. Helped a little, but I didn't actually get 'better' still had shortness of breath (SOB) all the time. Was admitted to hospital at the end of March, unfortunately picked up pseudomonus infection, which is notoriously difficult to get rid of, and I was in hospital 5 weeks. I am told that pseudomonus is a common hospital acquired infection, but not many people seem to have heard of it. Came home. very weak, and certainly not fit, but as I'd finished my intravenous antibiotics there was nothing that could be done in hospital that I couldn't do at home. Some days up, but mostly down, SOB constant. Went to Devon, hoping the air would help,one evening my husband had a stroke and was taken into hospital, fortunately we caught it early and he seems almost fully recovered. This means he is unable to drive for a month and as my lungs seemed to be deteriorating we made the decision to come home, and I drove. The next morning it was 999 and I was back in hospital, this time for 10 days again on intravenous antibiotics. Pseudomoinas is like cold sores, once you have it in your system it is there, lurking, forever. I am now home, but SOB all day and every day, the only time my breathing normalises is when siting still, but not always. This is not living. I get the impression that the medical staff cannot answer my questions, they don't know whether I'll ever get better, they don't know WHY I am not, Has anyone else experienced anything like this??

5 Replies

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  • Hi & sorry to hear about all your troubles. Pseudomonas as you say is a horrible bug & strongly associated with bronchiectasis. There's a separate support website called Bronchiectasis R Us (www.bronchectasis.info) that has extensive discussions & information about both the bug (an entire message board dedicated to discussing it) as well as the disease itself. I hope you find something anyway & also that your husband make a good recovery.

  • Hi there is also a site on here called British Lung Foundation. I am on it as I have copd as well. There are a number of members with bronchiectasis who all seem very knowledgeable about it and I am sure they will give you the benefit of their advice and experience. x

  • Hi to get into other sites go into 'my communities' at the top of the screen then into browse other communities. Type in the name of the site and you can then join. x

  • Awful, poor you. Yes I have LAM I know how you feel they have no answers for us. They are researching all those lung diseases and not enough money is put in rare pulmonary disease research. So it is here and now, living from one day to the next, enjoying the good moments and never give up!!

    As the guys said joining the association is a good thing. I found a lot of guidance and support there.

    Take care xx 🌺🌸🌷

  • Thank you all for your support - there are lots of good ideas and I don't feel so stressed about it all now. Will keep an eye on posts!

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