This just never seems to end :(

I am SO fed up, really struggling to be cheerful today. 14 days of IV antibiotics in November, 10 days of IV ABX in December and now I have an other dose of aspiration pneumonia :( Absolutely shattered, temperature, night sweats, nausea and breathless. I just go around in circles. ARRRRRRGH. The good news is I finally stopped the pred yesterday after six months on it, but probably will end up back on it again now!

Back on regular NEB's in the hope I can give the steroids a wide berth. Feels like this controls my bloody life, it never stops :(

26 Replies

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  • So sorry you are having a rough time of it.

  • Sorry to hear that. I get aspiration pneumonia too because my esophagus is narrowed. It's terrible. I'm pretty good about putting up with it...but like you said, some days it just gets to me and I think ""can't this go right just this once!""

    Hang in there! I hope you start to feel better every day and stay off the evil pred.

    Bee

  • does being on pred leave you open to pneumonia?

    I hope you feel better soon, take care

  • I am so sorry that you are having such a rough time.

    I hope you start to feel better soon.

  • Big hugs Lynda, sometimes its really hard to put up with the continuous cycle and I think its very.therapeutic to be thoroughly p'd off and have a wallow :-D

    Well done for getting off the pred and I really hope you manage ti stay iff it.

    Take care and be kind to yourself xxx

  • Sorry to hear youre going through suh a rough patch at the moment. I hope you start to feel better soon and manage to sttay off the pred.

    Hugs for a fast recovery. Take good care of yourself.

    Rose xx

  • Well done for getting off the pred - fingers crossed you don't need it again too soon.

    You're clearly having a rotten time so I figure that whatever gets you through it is fine. Ranting and complaining is great, and I always find that stamping about muttering to myself helps too, because eventually I have to laugh at how childish I'm being (just as well I live alone!).

    I hope you start to feel a bit better soon.

  • Nursefurby, that does sound like you're having a rotten time, hope Papworth help sort things out soon for you. When you say night time ventilation, is that CPAP/BIPAP - these can be rather quiet these days so not too Darth Vaderish. Interesting you and Carrie mention ciliary disorders, not sure if that's in line next for me as Brompton looking at underlying causes of sinusitis.

    Annista] You're clearly having a rotten time so I figure that whatever gets you through it is fine. Ranting and complaining is great, and I always find that stamping about muttering to myself helps too, because eventually I have to laugh at how childish I'm being (just as well I live alone!).

    I hope you start to feel a bit better soon. Did make me smile, great description and way with words.

    Joanuk, great images, thanks.

  • Nursefurby, that does sound like you're having a rotten time, hope Papworth help sort things out soon for you. When you say night time ventilation, is that CPAP/BIPAP - these can be rather quiet these days so not too Darth Vaderish. Interesting you and Carrie mention ciliary disorders, not sure if that's in line next for me as Brompton looking at underlying causes of sinusitis.

    Hi TJ, I've been waiting about four years now to be sorted out LOL so I shan't hold my breath! (cant anyway lol). Im guessing it would be CPAP/BIPAP.. I worry more it would keep Nick awake and he has to work. Don't want to end up in separate rooms, he's a very light sleeper, and found that even my feed pump disturbed him :(

    Ironically I don't have an issue with sinusitis, but its clearly one of the symptoms of ciliary disorders. However my childhood was constant chest infections, and Im also completely deaf in one ear because of a syndrome I have - which embryologically is a ciliary motility disorder - make of that what you will!

    Brompton do the tests, so hopefully it will be something they investigate for you if they think its relevant.

    quote=Annista] You're clearly having a rotten time so I figure that whatever gets you through it is fine. Ranting and complaining is great, and I always find that stamping about muttering to myself helps too, because eventually I have to laugh at how childish I'm being (just as well I live alone!).

    Did make me smile, great description and way with words.

    Annista that made me giggle too! Feel better soon :)

  • Sorry you're having a rubbish time, hope you keep off the pred and out of hossie and away from IV antibs. Gentle hugs.

  • ah that sounds rubbish, too many things all at once! I hope things improve a bit for you soon and you stay off the pred. Rant as much as you like, it does seem to help a little I find.

  • *hugs*

    hope you start to feel better soon :)

  • Thanks guys for listening to my moans.. I hate moaning, and I try so hard not to let Nick see me getting fed up. Been at Papworth all afternoon, and they have put me straight back on IV antibiotics. Also considering regular nebulised antibiotics. And they are referring me to the sleep centre for monitoring as its likely I will need night time ventilation at some point due to my scoliosis and low lung capacity - my worst nightmare, hope it doesnt happen soon, I dont want darth vader in the bedroom!!

    They are considering referring me to Leicester - not to pass on my care but apparently they are the only place which has the equipment to assess for ciliary motility disorders. Anyone been?

    At least now Im on IV's I might get off the mousewheel a bit quicker.

    Lynda :)

  • Sorry Joan I missed your question - the aspiration pneumonia is due to refluxing of stomach contents into the lungs, not the pred. We went to London last week and had a night in a hotel (saw Cirque Du Soleil at the Royal Albert Hall!) - there werent enough pillows to keep me upright enough and that one night is all it took for aspiration and infection :(

  • thanks for your answer Lynda

    i248.photobucket.com/albums...

  • awww Joan, that made me smile! You are WAY clever than me, I wouldnt have a clue how to do that! :)

  • Lynda, I will swap my know how of how to post pics for your medical knowledge, deal ? :)

    i248.photobucket.com/albums... run everyone nursefurby is here

  • JoanUK - do tell or give us a link explaining how to do this - that's way cool.

    Lynda - sorry you still aren't well. Hoping you feel better soon.

  • Beth, first you need a photobucket account which is where you can upload pictures and images

    then under each image you click on `img code` to copy it then you paste it here :)

    i248.photobucket.com/albums...

    you`re going to get me i248.photobucket.com/albums...

    lol

  • LOL!! Joan thats very funny :D - not sure I ever looked quite so um.. glamorous! hahaaa x

  • Sorry you're having such a rough time. I'm also a Papworth patient and in fact had the PCD investigations at Leicester last week. The date for the appointment took about four months from the date of referral, and apparently the actual results after the tests will take an additional 10-12 weeks. The doctor was lovely, and the test took only a few seconds, although it was slightly unpleasant for those few seconds!

    Do get back to me if you have any other questions. And get well soon!

  • Carrie thank you :) I was starting to think I was the only Papworth patient here! Do you go to lung defence? I've been going a couple of years, they have truly saved my bacon! Reassuring to know the PCD test is quick, hope its not the size of a loo brush hahaaa ;-p sounds like a bit of a wait though - mind you with only three places that do it, its no surprise. Fingers crossed for you that your results are negative.. x

  • TJ, I thought I might get my legs slapped for posting the images lol

    I like to make people laugh to lighten the mood but if it makes `em cough I`m in trouble ;)

  • Hello,

    Yes, I do go to lung defence, and then inpatient on either Princess or the CF unit.

    The thing used to test for PCD looks like one of those things they clean baby bottles with, but it is truly tiny. He said he was using the paediatric version, and it was ok, but it did feel as though he was pushing it so far in that it would come out through the back of my head! But only for a second or two. Results take 8-10 weeks but he popped out into the waiting room to tell me he'd had a quick look under the microscope and at first glance everything seemed fine. That's no great surprise as I've never had sinusitis, or glue ear or anything like that, but I do have diffuse bronchiectasis and low nasal NO when tested.

    Hope you're feeling better soon.

    Thanks

  • Hello,

    Yes, I do go to lung defence, and then inpatient on either Princess or the CF unit.

    The thing used to test for PCD looks like one of those things they clean baby bottles with, but it is truly tiny. He said he was using the paediatric version, and it was ok, but it did feel as though he was pushing it so far in that it would come out through the back of my head! But only for a second or two. Results take 8-10 weeks but he popped out into the waiting room to tell me he'd had a quick look under the microscope and at first glance everything seemed fine. That's no great surprise as I've never had sinusitis, or glue ear or anything like that, but I do have diffuse bronchiectasis and low nasal NO when tested.

    Hope you're feeling better soon.

    Thanks

    We have probably passed each other then LOL. If you see a skinny bird with a wonky back and a feed tube, and henna'ed hair, is more than likely me lol ;) I also go on Princess ward, that place has been my saving grace. They admit me in a better state than the local hospital discharges me! Its such a relief to just be able to ring up if you need a bed, or home IV's, which Im on now. NOT loving getting up at 6am to do them though, Im shattered!!

    I also have low NO levels, they have done it a few times at Papworth and its always been low. Sorry to hear you have bronch :( I was diagnosed with diffuse bronch at the local hospital but when Papworth redid the CT they were flummoxed, as there was no evidence of it anywhere! Given that it doesnt go away that was very weird, no wonder I wasn't getting better with my treatment at the local hosp!

    Im already starting to feel better, the night sweats have stopped thank goodness. They are horrid. Just knackered from doing IVs late at night and early morning. Shame I cant just have the middle dose lol ;)

    Lynda :)

  • Sorry to hear you are poorly :-((

    My daughter aspirates too, not nice :((

    Can you tell me what the procedure involves to test for pcd??

    Take care xx

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