Some of you may be aware of my current exacerbation which lead to me being rushed to hospital. Dr agreeing i could be treated at home with the community nurse from recovery team treating me at home as i need a nebuliser its the only thing that seems to be helping with my breathing. Yesterday i had to ring hospital twice as no one came. The first call i was told they would be out in the afternoon, 2 call i made at approx 7pm was told the hospital would ring me back with what was happening. I never got my call so have just rang them now as im still struggling to breath to be told they will ring me back i have a strange feeling no referral was done & they forgot. In meantime my oxygen level reading is at 89.68 & my shortness of breath is so bad, i don’t know how much longer i can wait, i hope someone gets here soon with the nebuliser 😢
Sgill waiting: Some of you may be aware... - Lung Conditions C...
Sgill waiting
Hoping someone gets to you very soon. Hang on in there Julie. Let us know how you get on. Xxx
Poor you Julie, it is awful when you are told things are being put in place to help you and they don’t happen. If you are struggling to breathe I would call 111 and ask for advice you may need to go to an urgent care centre or A and E so you can be nebulised without delay. I hope you get the help you need. x
My advice to you is Get an ambulance immediately. Get yourself back into a&e and then explain what has gone on. Take my word you will be seen to and correct arrangements will be made for you to be treated at home. At the moment you arenot a problem to them.make yourself a problem!!
Has the hospital rung you back yet ?
Try 111 ,if you are able to talk tell them your SATS and acute breathlessness
In the meantime can you use a spacer with your blue inhaler ?
Do you have anyone with you or a neighbour near ?
999 may be a good idea …..tell them your O2 level and breathlessness .
Sending best wishes .
Perhaps a few emails,phone calls will make you more breathless.if you don’t hear soon ,ring 111.You an do 111 online .it’s a bit of a faff,they do their best they sent a dr out to me in the lockdown.
I’m thinking about you x
I hope someone gets to you veryy soon, it must be so worrying for you. Please keep us updated have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Hope someone can sort this for you soon Julie. The stress of trying to get what you need won't help the breathlessness either. I often find I have to keep chasing stuff I have been promised - sorry state of affairs unfortunately (notwithstanding some of the problems caused by Covid) x
That's totally unacceptable. I think the advice you've received here is the only way forward. Hope you are not stressed out and struggling to breathe for much longer. xxx
UPDATE it turns out the hospital forgot to put my referral into the home recovery team. The nurses have just been from recovery and are appalled that I’ve been left to suffer. They put me on a nebuliser which felt so good, they were concerned that i have a lot of crackles & wheezing and inflammation & said no the wonder i was so breathless, they said i should of rang 999 for an ambulance & made me promise i wont wait like this again. They said it was the hospital’s responsibility and they had clearly let me down. On the bright side they will now monitor me & i have a nebuliser at home. Thank you all for your kind messages it has meant a lot to me x
So glad to hear things are sorted out for you now. Fingers crossed you will soon feel a lot better. xx Moy
Phew, thank goodness they came at last. Hope you're beginning to feel a little better nor Julie. Thinking of. P
Please make a complaint against the hospital, far too many people are being neglected like this with the excuse of covid, its a disgrace. I am so glad you have now been seen to, some people may not make it x
Hi Julie
I am glad you have got it sorted now, I don't often post on here but my experience with the NHS is the right hand doesn't know what the left hand is doing. I will often get a letter telling me of an appointment that had been and gone two weeks ago. I am afraid it is a case of he who shouts loudest. so if it happens again SHOUT loudly
Pleased you are now receiving proper care. Never delay if breathing becomes a serious problem. Every exacerbation cause lung damage.
Sush a relief to hear you are being looked after now. It must have been terrifying for you. I hope you are on the mend soon
Keep going girl.have xmas.everyone reading this is santa.best wishes
Home nebuliser 
Rescue meds.
A Bladder Cancer Update.
