Guess that’s when you know things are REAL dispite how much try to forget
In HE’s Letter talks about RAOULTELIA Infection got getting over ALSO last infection where my Spo2 dropped to mid 80’s
He told my doctors I SHOULD of been at hospital AND should been advised
Also he tells my doctors I should have steroids antibiotics AT hand
Then WE come to latest issues listed
1 bronchial dilation
2 mucus phenotype disease
2 emphysema
4 breathing pattern disorder
Could I feel any better really
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Jump to repliesHola, I know it can be taff at those moments but don't let yourself drag down.... speak with your doctor how you feel about it, I think it's super important that you have a good doctor who is able to listen. You are not alone 🌺🌺🌺
But he is right to say that you should have antibiotics and steroids at home for self management, I always have some at hand if I get a flare up. So you should take care of it. Don't let yourself down it will not help to get better. Take care of yourself and all the best. 🌹🌹🌹🌹
Hi melnel just thinking about health issues gets my breathing bad these days find I can’t really talk about it
Hi please try to stay positive it will help a great deal, I know it's easy for me to say that but I honestly know as do we all know how you feel. It can certainly get you down at times, but think to yourself hey you aren't in charge I am. Take care get those antibiotics and steroids so you always have them in, and stay strong. Have a lovely weekend. 😊 Bernadette xx
Have they given you any advice on how to remedy your breathing pattern disorder?
Any help with relaxation exercises to help calm and prevent the cycle of tight breathing ?
It’s hard work pursed lip breathing really as nose is always blocked.
Is pain but that’s best description of how it’s like to breath when panic anxertty stress kicks in
Hi,
Don't let it get you down. Things will start to look better. Maybe go or watch something that will give you a good laugh. Not too much though - we don't want you getting out of breath! At least that's what I do.
Hope you feel inflated soon!
Defo agree I need to do something tried playing with cat 🐈 and was bushed out breath
I might have silent infection ... so going to pop antibiotics’s and see if that improves things
The letter is a great step forward as several things have been identified and your GPs should act on the recommendations. Try not to let it discourage you too much. You can go back to your GP now with confidence because of the backing of that letter. All the best.
Hi Ergendl defo is that about letter and now am seeing lung doc every 3 months.
Be nice if GPS was tad more intrested tho.
Anyway started antibiotics and feeling better already
Hey Jeff. Try to focus on what you can control. Get your GP to refer you to a local respiratory physiotherapist. Really useful people with a team around them to help with every aspect of your lung condition/s.
I also have a breathing disorder (amongst other things) which I didn’t know about until two days ago. She has started off by getting me to practice sessions of breathing exercise. Currently it is to breathe in for 2 seconds then breathe out for 4 seconds. Usually after just two or three attempts I’m coughing but it is important in order to rectify. I also find it easier when laying flat than when sitting. So maybe try something like that for now and get that referral!
She was ticked off because the GP hadn’t been treating my infections correctly. When she listened to my lungs she could hear crackling and I consider myself ok at the moment! The GP outright refused a rescue pack of meds saying they needed to see me every time but they never check my sputum. That will be changing! I suspect she will be writing an extensive letter to the GP about all this. I will receive a copy so kinda looking forward to seeing what she says.
Keep positive and focus on getting that referral. Try breathing exercises but keep it simple right now until you have a resp physio to advise and support you.
P.
Good for you for getting the consultant on the GPs case! If we all keep at it we will eventually get them to do the job that they are supposed to.
Hi ladytelita I could go any time see breathing guys but with always having blocked nose generally have to breath like fish 🐟
But did try that breath through nose out via pursed lips DID find it hard work even irritating BUT was better than hospital trip
Hi Jeff, well now you have the ammunition you need to pull your GP into line to treat you properly. Also this consultant’s opinion should show the benefits agency that you do qualify. Keep going, keep fighting, we are behind you
Well said.
Cheers littlepom have Iidb assessor comeing to house on 22 so he’s going to get it for stoping my IIDB for accident I had When was working.
Remember when he is there you are unable to do ANYTHING for yourself or anybody else. Just sit there and look pathetic and take three slow tortuous breaths before you answer any question. Good luck.
Stay Strong Jeff. My Consultant always sends letters to my GP's as to me, Just to keep them informed on everything. Stay Positive Hun xxxx
Be nice if most gps read them I waited 3 months for doctor to ask me about district nurses giving me iv antibiotics AFTER lung doctor wrote to my doctors requesting it for me.
Ask to be copied into any letters sent to your GP and then you can make an appointment to make sure the consultants instructions are followed.
Yes, I see what you mean after a few Hiccups, mainly with the GP Secretary / Receptionist. xxx
Get you've accomplished one mission....in that your GP is going to have to follow Consultant's requests. Hooray! You can put a tick against that one now!
Horrible to read you're not doing too well at the moment...so many of us seem to be finding the simplest of B&B tasks such hard work because of our breathing. Pursed lip technique is good once you've got the hang of it,so hang on in there JAS!
Best wishes to you and Dad.
Hi SquirrelHolt it’s been hard as been tad short with dad given my breathing.
I can only guess how my dad copes AND makes me question how I am and how I do.
Thanks for best wishes AND defo going have to get grips with this pursed lip breathing
Yes the pursed lipped breathing takes a little bit of getting used to but keep at it,it does help to some extent and let's be honest,we need all the help we can get at times of suffocation,lol !! I found it more difficult when my sinusitis was going totally mental and like you,breathing through my nose was virtually impossible. Worst way I did the breathing in for 2 counts and exhaling for 4 counts all through my mouth and it still worked.... Ok not as effective but needs must eh?
You have had some inspiring replies and I pray that you will now get the treatment you so rightly deserve. It must seem overwhelming at present but keep posting here so we can all support you. With very good wishes.
Hi Whitechinchilla as been but am hoping antibiotics will help
Do feel tad better and breathing not as bad SO got my fingers crossed 🤞 and hoping for better times
Glad you feel a little better. I hope the antibiotics work.
Well done. We all live in hope 🙂
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UPDATE ... Orphen lung diseases / complement deficiency
Daughter’s lung biopsy
