need to have a moan (again)

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hello, it's me moaning again, but it is only on here that anybody listens! very disappointed with my nhs help regarding my bronchiectasis, am finding it increasingly difficult to continue working manually for a living, due to the resulting pain and exhaustion felt the day after, my doctor will not let me sign off work on sick, enabling me to get some income however limited that may be. in the past week i have earned a whole £45. this has forced me to start selling some of my assets, little things one at a time to get a few bob. I have been backed into a corner like a trapped rat and I don't know where to turn, I am envious of you lovely people that have considerate sympathetic understanding doctors and consultants, sad or what? refused antibiotics last infection for example, they do not seem to comprehend that each untreated infection makes the next one potentially that bit worse, and yes I am the only patient at this practise with this illness. changing doctor is'nt really an option due to my remote location, I can only bang my head against the proverbial brick wall for so long before something explodes....... any advice please? has anybody else had the same experience?

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  • Posted

    Hi David ..I feel your pain...I am on oxygen now...it keeps going up and down...Pulmonary doctor had me do a CT scan on Monday...I hope it tells him something..I know that I am worse since last year...I am afraid what he will tell me...My ENT Doctor is the one that said I have Bronchietasis...I don't think the other doctor was happy about that...bur he was not helping me so I know your pain...I don't know where you are from but we have really good doctors here in Texas....My insurance is high.$650 dollars a month....What helps me the most is a Nebulizer Machine.and some mediciane called ACETYLCYSTEINE 20%....it breaks up the mucus so you can get it out of your Bronical Tubes...I just did it about 15 minutes ago...I am coughing it up..feel better....ask your doctors about it...write it down so that they can see it....machine is only about $60 dollars...the medicine is very cheap...The tubing is only a couple of dollars...You have to take control David..stand up to you doctors..That is the only way I got oxygen....Stay Strong....We are all hear tho help you...
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  • Posted

    Hi David

    My heart goes out to you hun.  As if bronch isn't bad enough to cope with, not having the correct treatment and support is totally unacceptable.

    It seems to me your GP is really not up to speed on non cf bronch.  If I remember rightly I put a link on your last post of the non cf bronch guidelines - seems like he/sdhe needs to read it.

    What was his reasoning for a) not giving you abs for your infection and did he do a sputum sample?  b) not allowing you to take time off sick when you clearly need to?

    I appreciate you only have the one surgery but are there more than one docs there?  There may be another who is more clued up on respiratory problems.

    Have you contacted your consultant?  I assume you have one -you should have.

    You could speak to the nurses at the British Lung Foundation.  I can't remember the number off the top of my head but I will get it for you or if you are a member of healthunlocked/blf you can get the no by clicking on the red balloon at the top of the page.  Will find it for you though.

    You can't carry on selling stuff off.  This is all really bad for your wellbeing as well as your health.  

    Please let us know how you get on.

    Good luck.

    cx

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  • Posted

    Hi David,

    Your doctor sounds absolutely useless! You should have antibiotics at home on standby so you can start these immediately you feel an infection coming on!  You need to provide a sample of sputum to have this checked at the hospital to see what the bacteria is to enable the antibiotic to be changed if necessary.  Your doctor should know this!

    All in all you are getting no help or support which is awful!

    I would contact your consultant and explain your situation and see if he is willing to write to your doctor. 

    I have a respiratory nurse I can e-mail or ring connected with the hospital so I am very lucky in that respect. 

    Hope things improve for you very soon.

     

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  • Posted

    David, that's awful.  Wish that there was something I could do to help, but I'm new to this also.  Just know we are all rooting for you and hope that it all works out for you.
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  • Posted

    Well i really do not know how you are coping what is happening to you is disgusting. But i think like some one ese said get in touch with BLF, maybe they will be able to advice good luck. Wonder how your doctor would feel if h got it
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