Good and bad news

Good news is that I can stop the pulmicort (budesonide) and nebulised colomycin. Bad news is my immune system appears to be shot to pieces and I have an infection I can't get rid and antibiotics have not helped. Stopping anything that could skew the results as they need to find out what is going on. Have to have loads more bloods done and take in 4 sputum samples for all the things they want to test for. Worst case is needing immuno replacement therapy for life! I have been told to call the consultant if I get so ill I can't manage and he will admit me. Got a busy time so could do without this!

I have bronchiectasis.

Judith

10 Replies

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  • Were you nebbing Colomycin for long Judith and what pests were you growing? I can see why you are glad to come off Col (what a palarva and time consuming too) still for those it helps it's worth the hassle. I was fine at assessment but ended up in A and E with SOB after 10 days. Was on them because colonised with HI. IVs did the trick for me in lung terms although messed up GI bug time.

    I hope your immune system is not so compromised as to need immuno replacement. I think our immune systems are compromised to one degree or another. It beats me mine was not strong enough to react to a cream after face surgery to attack rogue cells, but it fights me with inflam arth to it's hearts content (wierd).

    I hope all your samples come back without any nasties rearing their ugly head giving you trouble before they can start treating you. I hope you don't have to go into 5* Judith, but sometimes it can turn out to be good out of bad. Does your hospital allow you stay for a short period and do your own IVs at home? Glad your consultant sounds proactive.

    Please let us know how you get on Judith.

    love cx

  • I was on colomycin for over 2 years. I am only off it and pulmicort whilst they work out what on earth is going on. I go to a private hospital most of the time and they don't allow home use of ivs. My consultant works at St George's but he said I might have to to Addenbrokes to see an immunologist.

    Jx

  • Hope you get some answers soon hun.

    love cx

  • Oh Judith that's miserable. How that you start to feel better soon and the tests find out what the infection is. Take good care and try to stay positive with love TAD x x

  • Hope you get the bugs identified soon & they can find the right treatment.

    Best wishes

    Jo

  • Wishing you all the best

    KOTC

  • Good luck, Judith. :-) :-) Alison

  • Oh Judith,what a miserable time for you.Do hope you get to the bottom of it all.Sounds as though they are doing all the right tests for you etc.Lets hope you get the right answers!

    Hugs & love Wendells xxx

  • Thinking of you.

  • Sorry post went twice