What a day you ever get the feeling y... - Lung Conditions C...

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What a day you ever get the feeling your nhs patient records lost mixed up

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11 years ago•30 Replies

Well i think i got results of my X-ray .... well in a fashion no pneomone so its not that causing crackling lungs

My lung doc was hiding and sent is register might well of been joe jane public asking me all sorts i have already told lung doc

First thing she said did you get lung docs letter in surport and is response to my asbestos iidb claim.

I said am not happy as he is saying i have had bad lungs like for ever .... which is untrue.

Then thay said i have bronchitiasis no mention of my emphysema bullea heart problems or infections

Then told me unless a stop smoking witch i admitted to one or two a day i was finding hard to carry on smoking and admited i would stop .. then she said thay would stop giving me antibiotics

Well that was it then a heated debate about do thay threaten junkies or those who like beer No thay dont.

Doc could not answer and avoided any question about matrial i have been coughing up

Totaly avoided any question on asbestos fibers giving me all theses infections and only went on about my smoking

Thay tryed saying my illness was panic attacks and hyperventalion also irregular breathing pattens .. So i said have seen nutters runing up the road and nope there not out of breath also here i am sat here suffer pre hypertension .. and do i look like am hyperventilating told me all my sats was ok and antibiodies

But could not tell me anything about matrial i have been coughing up and how in my opinan is causing all my infections breathing problems ...

Some times you wonder if thay are the experts orif thay have your just mixed your notes up as is diagnosis is and previous converstions are full of contraditions

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Antibiotics

30 Replies

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Mavary11 years ago

Oh ! Dazisnotsogood. You've not had a very good day. There are always some like that. Maybe when you go again they will be brilliant. As you say maybe they got your notes mixed up.

• in reply toMavary11 years ago

Wish thay had but no my lung doc was hiding .. a know my GP must of phoned him told them am not happy only issue is really is how thay can say for sure i have bronchitiasis yet he as had no sputom samplels or that camera down the lung so how can he be so sure its bronchitiasis with none of those samples

appyalison11 years ago

I just don't know what to say, Daz. I think they are just not looking past the cigs. I had no idea they could stop antibiotics. What is going on? Good luck with your fight. Alison

• in reply toappyalison11 years ago

Hi nor did i .. But am not one to be intimidated or discriminated against like i said if thay do i will just litter up casualty

Mavary11 years ago

Hi dazisnotsogood. They told my Husband he had bronchitis first then Bronchiectasis and now IPF. He has had scans but no camera Down in the lungs which they do with a lot of people. However I am sure they know what they are talking about. Be patient. Go and see your Dr. Or maybe have a word with the BLF to see what they recommend. Hope it all sorts out for you. Let us know.

• in reply toMavary11 years ago

Hi mavary cheers i would agree with you there thay do know what thay are doing.

Its the way thay back track when thay have told you stuff previously and lie denying me justice a don't like .. A dont think its normal to have lung infections for two years and be coughing up lung tissue .. when i ask docs no mention of what that is or even interest yet alone mention of years of asbestos but quick at looking at fingers to look for nicotine stains and blame cigarets for my condion if a was not sick already ad say thay make me

Cheers thanks

Toci11 years ago

I love the way you asked if they withhold medicines from drug users and alcoholics, as of course they do not. Threatening to withhold antibiotics from you is absolutely disgraceful. Sounds to me as though they are closing ranks, Daz. Scoundrels!

• in reply toToci11 years ago

Is a disgrace really .. Shot across the bow think is legal term so was bated right back at them.

Is not nice a went there with best of intensions was nice an all

Just received load of bs basically must of been one of them new august docs

Ye even come excuse over medicating when fags one didn't work all to try and snatch my antibiotics of me .. so i said you just said i have blar blar and is not NICE guidelines early antibiotics treatment for my condition

Yep defo closing ranks .. its not like a dont know why as my lung doc is on gov advisory panel and is head of one of these new hospital grounds private research centres .. We can see he is looking after him self and whos looking after me.

PollyP11 years ago

Daz, ask PALS to support you and also request a second opinion froma different consultant. Wishing you luck.

• in reply toPollyP11 years ago

To be fair did ask pals about my x gp waste of time there is more lead im my pencil than theres

Offcut11 years ago

Daz I can see that it all seems to be going against you. It does look like they are closing ranks but try and get answers with gentle questioning. I have found if you say "As you know research has shown" is a good way to stroke their ego.

I did that with the fibrosis due to Oscillator and infection. I now have an answer to the peakflow due to my RLD what they get is all I have got, there is nothing in reserve. "Salbutamol does not work for me as my tests show"

Keep your head up and your temper down I know its hard, I am looking for my t-shirt as we speak.

Be Well

Phill

• in reply toOffcut11 years ago

Hi offcut a do try .. But when thay was going on about stuff thay asked about my heart.

And yep i thought about how you and how you had been bounced about each blaming each other

But in my case that needed nippong in the bud right away so i told them if am coughing that skin am looking at each day with those fibers in it that is making me ill and as your the doctor what is it....

Just think thay dont like being told .. must be some sort of professional thing thay need to get over

But yep as i have consolidation in inferior lingula might need my heart looking at again

Was going to ask offcuts about do you get feeling in guts your lungs heart are being squashed and cant take deep breath then a rember your post

But this week my lungs feel like that and the rolling up like a roller blind

Anyway cheers hope you start feeling better

Offcut• in reply to11 years ago

I saw an example on the web (cant find the link) but the way it was explained I thought was really good with regards to obstructive and restrictive look at your lungs as a balloon.

Obstructive: you blow it up as much as you can and then stretch either side of the tube and the air comes out but slowly. the balloon like the lung can be made easier with salbutamol.

Restrictive: Because the lungs do not have much elasticity because of scaring you are inflating the balloon inside a box and when you let go of the end it blows out quickly and is empty. Every infection there after can make the box smaller.

I have a weird thing that allows me to potter about, Then for no apparent reason I have no breath at all and my legs go to lead. As if I have used up any spare oxygen I have stored in my body.

• in reply toOffcut11 years ago

Oh Offcut I know that feeling with the legs, its like they just don't want to work any more. I am restrictive too. My breathing deteriorates quickly on excess exertion, very cold weather hurts the lungs like hell and takes my breath away. Hight humidity and heat affect me the same way, so the tips about staying inside in these conditions does help avoid some of that. Its an awful feeling breathing and not feeling like the air contains any 02. Good description about obstructive and restrictive, being restrictive is why some can get a good fev.

Best wishes BC

Offcut• in reply to11 years ago

One of my docs took my peak flow and said I have nothing wrong 300 is an okay peak I used to blow 650 on a good day. Another kept moving his stethoscope about and I had to tell him that I have a paralysed diaphragm so you will not hear anything there as there is no lung there now! I have 2 chest drain scars and a traci scar it seems that they have no time to read the notes nowadays.

• in reply toOffcut11 years ago

Makes you wonder where their head is at with visible scars.

Keep warm and well, you too Daz.

• in reply to11 years ago

Cheers bc

• in reply toOffcut11 years ago

Hi offcuts i had my old doc say he could not hear out .. I said well something is happing as am sat hear

• in reply toOffcut11 years ago

Hi offcut burning candle at both ends .. Sound like power naps beat power exersices ... My condions reminds me of that young lad in film crank where he is ok one minute then bushed the next.

But yep think we are talking about being restictive and obstuctive yep seen that sight in question

Who would think you could have diease match my character

Cheers thanks

richardcrossroads11 years ago

not being decisive or answering questions and giving you full information is becauseI do think that all NHS employees have been told to avoid court actions, and I do think they are frightened of being called as a witness, I have found this evident, on another problem I have been through the complaints procedure, they do everything they can do to stop you, this was 20 years ago. but still today they treat me with kid gloves and are to say the least difficult to deal with, I am sure there is a code on my notes saying that I am a trouble maker.

but in fact all of my efforts in this complaint were on behalf of a third party.

• in reply torichardcrossroads11 years ago

Hi you did right helping out.

I have never been mean or nasty well unless provoked but to be treated like i have and i assume those who never questioned there decisions b4 must of been treated ... well i can only say its not on given currant events with NHS

But yep you are right about there list or astrafix and staying clear of court action

Cheers thanks

sassy5911 years ago

Oh Daz, how awful for you. On and on it all goes, round and round in circles. I think they don't (or don't want to) look at the bigger picture. They do not see you as a whole person and just take in the bits of you that they think they can deal with. It is so wrong and I always wish you luck in getting to the bottom of all this and getting the right results for you. Stay strong Daz and good luck to you as always. xxxx

• in reply tosassy5911 years ago

Hi sassy59 nicely put yep might have to put humpy dumpy back together again and take look at hole picture

Cheers thanks

11 years ago

Hi Daz, so sorry this has happened to you. I do think you should go to PALS, BLF and the medical commissioning board about this refusal to give antibiotics.

Do you have previous communication on your diagnosis, re emphysema, asbestosis, etc. this is a situation that is not acceptable, how can you know what your lung disease really is and be confident that the medical profession are treatment the disease correctly, you can't when they keep changing the diagnosis and goal posts.

I do hope you can get some peace of mind about this Daz, do check back with your nice GP lady and explain to her how upset this makes you feel, I wonder if she can refer you to the Royal Bromptom for an accurate lung diagnosis, this chopping and changing diagnosis wouldn';t give any one confidence.

I am wishing you the very best for your health always.

Best wishes BC

• in reply to11 years ago

Hi BC yep very well said might need to take you with me fella i.e Mr reason and rational thinking

Yep i could not quite summed it as good but yep not stoped them yet so will see what happens but yep al be extra nice and have faith in my gp

Think if am lucky can get trip to spain on perscription with oxygen as did ask me what i wanted to do .. only joking about spain its not like am director or mp but was nice

Think she as more faith in my lung doc than i do now

Cheers thanks

• in reply to11 years ago

Oh yay Daz I'll be in to win trip to spain definitely count me in

• in reply to11 years ago

Is the only way

junespoon11 years ago

Not good for you Daz, can understand you getting cross, Surely they cannot stop your anti-bs such a essential med for all of us with lung problems ,Chin up mate, we are behind you. Heather.X

• in reply tojunespoon11 years ago

Hi cheers junespoon