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Still getting my head around it.

Posted , 7 users are following.

gary87083
gary87083

was diagnosed a few years ago.  Have a flutter valve, and hang inverted to help clear mucus.  Tried Advair, but saw no difference.  Seem to have an excerbation every 6-12 months.  Is the typical of others experiences?

2 likes, 19 replies

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  • Stixlabushka
    Stixlabushka gary87083

    Posted

    Hey Gary. Every 6-12 wouls be nice. I get one 4-5 times a year. And it's a 1 month round trip.

    I use bubble pep and excercise to stay on top. But if you catch a cold or flu, that's what sets it off.

    How old are you? I'm 39, had it all my life.

    What's your lung function?

    Do you talk to any one - counselling?

    I suppose it depends on the severity of the disease.

    Keep your chin up mate.

    • gary87083
      gary87083 Stixlabushka

      Posted

      I am 68.  Lucky to have made it this long without symptoms.  I certainly sympathize with you.  My lung function is still in the 70s, so I guess this is a mild case so far.  I am on a prednisone taper for this latest flare, and trying to avoid an antibiotic if I can.  Don't want them to lose the effectiveness for the future.  I still walk and hike, though not as easily as in the past.  I know it is important to keep going!  Have you found an inhaler that provides some relief?

       

    • sam90709
      sam90709 Stixlabushka

      Posted

      Hi Stixlabushka, with your frequency of  exacerbation - same as me - I was wondering whether you're taking a prophylactic antibiotic? Seems to have helped me somewhat. The exacerbation are definitely milder (though still  frequent).

      Also I wonder what you're growing? We have discovered, between two consultants and myself (!), that part of my problem is that I have an inbuilt weakness in my immune system for dealing with certain types of bugs.

      Gram-negative bugs we usually develop resistance to ("learn about ") in the first few years of life. I didn't. Furthermore with 4 small children (2 through 10) I have basically been surrounded by carriers of these bugs for 10 years which probably hasn't helped!

      Any of this sound familiar?

      Stay well

      S

    • Stixlabushka
      Stixlabushka gary87083

      Posted

      Mylung function is at 41%, it has dropped from 51% 18 months ago. I maaged it really well between 25-36 but know it almost owns me. I am fortunate tobe under the caref the CF clinic at my hospital. I do not have CF. I'm mabaging ok considering, i supose that i am used to it having it all my life. 
    • Stixlabushka
      Stixlabushka sam90709

      Posted

      I have managed to grow a few tings. Norcardia, psuedomonis, aspergillis, fungi's. 

      Yeah i have a 5 year old at daycare/kindergarden and she brings home virus' and it goes straight to my lungs. 

      I am not on any anti's constantly, but i might as well as i have only had a handful of weeks off them in 3 years. 

      My exacerbations are anything from tightness for 3-4 weeks on preventative anti's through to a cracking pneumonia theize of your fist and1 foot out ogintensive care. 

      Its hard with ayoung small family, i have given up full time work, or workingfor anyone. To unreliable. I work from ome and say at home oe dad. 

      Its a lot of words i cat say out loud pn this orum 😁😖😋😜😆😫

    • sam90709
      sam90709 Stixlabushka

      Posted

      Blimey - you've really grown some shocking bugs, I am so sorry. I would have thought that with pseudomonas and aspergillis and a clear problem with final infections you would be on some pretty hard core drugs?

      Stay well

      S. 

    • malkin
      malkin gary87083

      Posted

      Hi Gary. Im Malk.  Is it Pedisolone steroids that you are on ? these should help clear any inflammation you have, its important to complete the course, even if you start feeling better half way through it, the Antbiotics are only required if you mucus starts to become discoloured, the discolouring tells you you are starting an infection or already have one, it best to keep a box of Antibiotics ( Amoxicillin ) and a box of sSteroids at hand as a emergency supply, saves waiting days for a doctors appointment.Wish I was Like you and and only had flare ups once a year, you dont know how kucky you are. best get yourself a flue jab each year. breath easy Malk.
    • gary87083
      gary87083 malkin

      Posted

      Thanks.  After reading through these posts,  I certainly do know how lucky I am now.  I know that this disease progresses, so I will cherish this relative health.  I do have a small cache of prednisone, but not of antibiotics.  I will work on that.
    • Stixlabushka
      Stixlabushka sam90709

      Posted

      When its bad, IVAB for two weeks- tazacin. In hospital. When i get out or not so bad augmenton duo forte. 

      For the norcardia i was on 3 tabs daily of bactrum DS for 9 months. That was rather s@@t. 

      I am immune to a lot of the weaker ones now. 

      And i'm on seretide twice a day. I don't have asthma, but i do have COPD too.

      I was born with crappy lungs.

      But I've lived a bloody good life.

      I'll stop when I can't breathe no more. 👍 

    • sam90709
      sam90709 Stixlabushka

      Posted

      Wow, norcardiosis sounds really horrid. Well done for rocking on through!

      Stay well Stix and clear lungs!

      S

    • susan14824
      susan14824 Stixlabushka

      Posted

      Hi, I am quite new to all of this but now starting to realise a have a problem.

      I have tried to shrug it off !.

      I exersize too but my mucus is getting worse and my chest feels tighter.

      I'm worried about my life.

      I am 47 a single mum and I'm all my kids have.😊

    • Stixlabushka
      Stixlabushka susan14824

      Posted

      hi susan14824,

      yeah it's pretty sh**ty having kids with this condition. they drain you just day to day and you cant stay on top for your self.

      my little one is 5 and for the last 3 years she has seen me ill more than healthy.

      have you got a family and friend network?

      if so use it!!!

      have you got a good, understanding doctor/specialist?

      this disease needs a good diet, positive head, well hydrated and excercise. BUT it's a fine line not to over do it. and if you need a nap, take it. [circumstances approved]

      you can't shrug it off, its apart of you now. you have to own it, like you would a child. [it ain't going anywhere]

      if you can talk to a professional it helps! A LOT!

      if you want to talk more i think you can DM me?!?!  

    • Margot10
      Margot10

      Posted

      sorry, don't know what happenened with the other post,

      an article you need to read is from Dr. Christopher the mucusless diet, another one Autogenic Drainage, it works, eat absolutely no dairy, eggs are ok. There are specific breathing gadgets like the flutter and the pari pep, I don't think I can list specific herbals and other products on here, I can give you details via email. I tried a lot of stuff that didn't work, finally narrowed it down, my mucus is thin and easy to cough up, have not had an inflammation in years, I have stage 4 copd.

      Nebulizing with saline and meds helps, but of course this is all my opinion and anything you do you have to check with your Dr. Wish you well email if you want  more info, Blessings to you

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • BookNut
    BookNut gary87083

    Posted

    I have had the condition for 4years.  Was healthy before that.  Got steadily worse till I was having exacerbations every 6 weeks or so.  The only reason I was good then was because I was on prednisone.  And for some reason, my pulmy calls it a "mild" case.  I have fired him.  My asthma doc knows how bad I am.  Last time I had an appt sith her, she called an ambulance and sent me directly to the hospital.  Best thing to happen to me.  A nurse suggested nebulzing saline solution, which has been very helpful.  Researching that remedy led me to this forum where I discovered  an over the counter remedy.  Every time I mention it, my post gets marked for moderation so I have stopped mentioning it.  I wil,private message you instead.  Imhave also had to resign myself to being on low dose of pred long term.  Riht now I am OK at 10 mg.  Hope tomget down to 5 soon.  My advice is...keep researching and stay on this site.  The colective wisdom is amazing.
    • gary87083
      gary87083 BookNut

      Posted

      Thanks for the advice and encouragement.  I am so glad I found this forum.
    • malkin
      malkin BookNut

      Posted

      Thanks for info. Try the British Lung Foundation forum site. Loads of advice for the asking, I been there for a couple of years now, but go under a diffrent name. Regards breath easy Malk.
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