Hi everyone looks like my shit year is carrying on till next year as u all know I had tests done at the royal Brompton hospital back at the beginning of Oct I received a call last Thursday with results u have emphysema big surprise there not !!! U have small holes all over your lungs but there even that was it he didn't know my vein had blown with the contrast dye we do another one in a few months he informs me I'm struggling to breathe when I move I told him I'll recommend a new inhalor I'll write to your doctor no letter yet then today I got a message from them were doing another call to u on the 4th march 2021 at 2.30pm I phoned them to be told no it's at 1.45pm but still 4 bloody months away I asked why that long and still I haven't got a proper appointment he told me there's a pandamic on no one knows what's going to happen I know what's going to happen I thought to myself I'm gonna still be struggling to breathe !!!! I'm frustrated angry and don't know why another phone call is necessary I want an answer can u help me with treatment or not now I've got to wait another 4 MTHS bloody long months not knowing and still struggling have they no heart leaving me in limbo 😠😭
Frustrated: Hi everyone looks like my... - Lung Conditions C...
Frustrated
So sorry you are going through this. He said he would write to your doctor regarding a new inhaler. I would certainly chase that up. with your GP. I sure hope you get something that works better for you very soon.
Best wishes BK
Thankyou no letter so far so no new inhalor and my doctor not in till Monday everything's a waiting game I'm normally a patient woman but 4 months for another phone call is not acceptable then how long if I'm offered treatment they have no idea how scary not being able to breath propery is like
While waiting till Monday you could phone the Consultants Secretary and ask if the letter to the GP about a new inhaler has gone out yet, when the letter went, when it will go, could she send you a copy etc.
Best wishes BK
Bless u Hun I'm one step ahead I did phone it went out on the 7th appantly hopefully here by tommorrow
That's great news - well done. Take it steady till Monday x x
I will thankyou and u hun
I like Honey, or as winnie the pooh might say Hunney,
Hun is not my name reference a warlike Asiatic nomad.
Hun, sugar, sweetheart, poppet, all terms of endearment I understand
however to call me by those names I find inappropriate online with people who really don't know me well enough to use such a term of endearment for if they did know me well enough they would know not to use such pet names.
I hope you will appreciate my preference in not being called by those names.
Needless to say I do prefer to be addressed at HU as Bkin or BK
I have explained this before, perhaps you have not been aware of my preferences, I hope you and others will respect my wishes on this matter and not take offense just because I let my preferences be known.
(I note you have not addressed others on your post as Hun)
Its a question of respecting my wishes.
Oops no offence is intended I do use that name a lot I won't use it to u again to you
That’s horrible for you and I know Pete can empathise with struggling to breathe. He has the bronchitis part of COPD. As you say, it’s a waiting game which doesn’t help you at all.
I do hope the inhaler prescription comes through soon and do chase things with your GP if necessary.
I’m thinking of you. Xxxx
Bless thanks u just want an answer I don't think that is too much to ask for hope all well we th u and your hubby wish I was a kid again running around fit and healthy I hate being 60 and unwell it sucks
Bless you, I totally agree with you. Take care and stay safe. We’re doing well thank you.
Hoping for better days ahead. Xxx😘
Amen to that 🤗
I would try ringing again Nd asking how you are supposed to cope with the shortness of breath till March.
There always the option of ri gi g 111 or 999.
I know we all eps at to stay away from hospitals,but sometimes needs muse.
Before I was diagnosed 2 years ago,I spent months waiting for an appointment
I eventually ended up as emergency admission with Shortnessof breath.
I was in resus for 4 hours and kept in for 11 days.
Consultants letters can take ages to get to the gp
Where I am treated many of the letters are typed externally.this makes the wait even longer,no fun when you’re suffering.
I really hope that you get somewhere.
Thankyou so do I I did Amit when I phoned the hospital earlier I gave the person on the phone a grilling just like customer services can't tell u anything just a call handler answering calls but no t able to give any information frustrating
Hope things start to improve soon. It seems endless when you can't breathe and nothing/no-one seems to help. Best wishes xxx
I know I'm constantly hitting my head against the wall I've had enough
Don't hit your head- find something else to take it out on. Maggy in The Mill on the Floss had an old wooden doll to bash. I've always thought that sounded a good idea.
Lol I'll find something 😄
The trouble is,theyre providing a service to millions of us with horrendous lung conditions,so appointments are few.u should try rely on nurse and gp for in between care,and us for support.
Try ding online research into tips for helping with breathlessness,clearing fluid off chest etc And being proaactive in practise practise practise, is sometimes all we can do.its very hard trust me,ive just spent hrs awake,bringing up half pint fluid off lungs. Try to stay calm as stress wiill make it worse xxx
That's the thing I contacted Brompton for steam abilation but it took me a year to get the referral then 8 months for the tests 5vweeks for a phone call for results now 4, months for another phone call they told me last week my lungs were too bad to have the steam abilation if I hadn't have had to wait for somebody to refer me constantly reminding them I might have been well enough to have it I gave up smoking 9 months ago breathing a damm sight worse no coughing no muck just on my knees breathing I researched trying to get anything that would help me and this where I am now waiting
The vast majority is down to ourselves stilll.if i were still smoking 9mths ago,u maynt have b able to have it done then.again,research - theres information thats e tremely helpful blth with helping breathing,breathlessness,allsorts lung related.its up to u to learn these coping mechanisms as the damage to yr lumgs is done.if u dont,its going to get harder.unfortunately.im now nr a punt of fluid off my lungs ths morn - only way up is by coughing it up.yes its unbelievably tough.dont blame the hospital.theyre mowed under in respiratory.they cant work miracles either on my severely damaged lungs,my sis in laws smoke damaged lungs or yrs.study and practise what u can,for yr own sake
bless u I used to bring crap up and cough then when I stopped smoking I coughed twice that was something in my throat and 2 tiny bits of rubbish no bigger than half my little finger doctors kept on saying your out of breathe cos your lungs clearing there not there's nothing there so that worried me where's it gone to I was always bringing something up strange but onward I go hopefully I'll get something to help me
Ive not smoked,just unfortunate to have severe levels of multiple complex lung diseases.yr fortunate if dont have fluid on lungs as it blocks the airways and if cant get up ill drown.yr biggest help will be what u learn to do to help yrself.its bad time of year for us all,and worse to come.look at help avIlable,its the only blessing that there are strategies to help - look at bkins videos, advice on here,look online.the cigs damafe is done but theres lots of tips to help u cope, bcause there are no miracle cures.someone mentioned meditation,relaxation to music.it all helps x
thankyou I'm on the waiting list again for pulmonary rehab next year I love music that now helps as the ciggies did before and they did relax me but ended up giving me emphysema too can't win can u I find laughter the best medicine so have lots of funny videos 😁
Pulmonary rehabs great.tauggt me alsorts.and i used to luv exercise,it helps u into it with pthers in same boat.u have a laugh too.u have done well to get off cigs.i hope that parts getting easier for you.its an education getting lung diseaze and learning to cope.and find strategies to cope.if yr strugggling with anxiety and grief,u could ring Mindsmatter as they can give counselling,cbt etc.may help u.ah musi cs a gift to switch off to.along with local radio,tv etc.do u folllow any soaps,or programs - gd to zone into another life. Have u any hobbies? Ive always liked sewing but not been up to it pazt cpl years.do u cook at alll..i keep a seeat in kiitchen..every little helps xx
Thankyou not smoking has its challenges I've no hobbies I tried knitting ended up with scarfs or a hat lol I'm not that good no patience for jigsaws anymore either when my phone played up I ended up throwing it so I really should work on my impatience issues 🙄 looking forward to rehab even though I hate exercising as don't want to be more out of breathe but needs must
Hopefully your inhaler prescription is ready for you very soon. Try to release your anger through meditation or something similar xx
Not anger so much as the feeling that they just don't seem to realise what we go through
Yes. I felt the same a couple of years ago when every doctor I saw said you’re fine , your chest is clear , go home yet I was coughing non stop and was physically a wreck I dug my heels in and asked to be referred to the chest clinic (I was in a& e at the time). I was referred and my problem eventually got sorted by a very understanding doctor. X
Can I have the name of that one 😀
I have decided to send you the non shit calender for 2021,it's our alternative to the much sought after countryfile calender only far more colourful.
It's bonus is that all appointments penciled on it will be honoured and take place ontime thus relieving all strees and anxiety in your life.
Best wishes for 2021
Ski's and Scruff's x
Lol thankyou that made me laugh bless u it's Friday 13th and my electric has gone off till this afternoon could only of happened on a day like this but your text put a smile on my face 😁😊😁😊😁😊
We aim to please and raise smiles on a daily basis. 
x
You are a star a much needed smile here's one back 😁 nice big one
I'm not surprised you're feeling as you are! You've waited a long time and it must feel as though you've got no further on.
I hope your GP gets your inhaler sorted out for you asap and that it makes a difference to your breathing.
It's good that you've been proactive by phone, but have you tried emailing? I have found this helpful this year when things seemed to be moving slowly for me (not a lung related issue). I found the hospital department's email address on their website and sent my first email as 'For the attention of ...' . and cc'd it to my GP. Result! I emailed the same consultant again later as I had not been sent an appointment for tests that had been ordered. Again Result! Test appointment arrived a couple of days later followed by a date and time for a telephone appointment to discuss the results of that.
The good thing about email is that you have a 'paper trail' (as they like to refer to it) and you have a copy on your own computer which shows when the email was sent. You can also set it up to show when the email was read by the recipient. It may be worth a try.
xx Moy
I'm getting more confident doing stuff online so I'll try that thankyou I always feel so pleased with myself when I try the internet thing and I do it right haven't always done so in the past but getting there wish me luck
Good luck! xx Moy
Thankyou so much will update when I get news from hospital in march eek
Ive just seen BKin shared videos yesterday, u may find helpful
With all due respect, I think all of us, literally all of us, no matter our conditions are forced to accept that worldwide healthcare negligence and an overbearing amount of patients affects all of us right now. Through no fault of our own this is our life now. The second we get a break we'll need to discuss what healthcare is going to be like, what resources we'll make available for our health care providers, how we'll ensure stability in health care provision and who precisely we'll treat first. Health care is more often than not a government issue and as citizens, we really do need to organize around this and other health issues, because if there's anything I've learned over the course of this pandemic it's that there's NO ONE there to save you once it hits you and NO ONE, especially not the government, our current authorities, not even actual doctors themselves are helpful when they really need to be.
I know and there's so many people who are not well when my husband died from cancer last month after being free from the last lot for 5 years I was so angry he wasn't going to beat 3 types this time he was so positive and I never thought he wouldn't beat it but that's I knew deep down how could he beat it seems so unfair never smoked in his life and then I think of all those people with covid must be so scared I know there are so many people that need help and we are all hoping we will get better I wish I could wave a magic wand and no one would suffer again but I can't so we must rely on doing the best we can and pushing for answers
Meanwhile, a lot of us has to also admit to our part in this. I chose not to become a doctor (in spite of being possibly helpful). Neither did I chose to become a nurse (working conditions for Nordic health care workers are worse than ever).
Well your input helping me so thankyou for replying it was my fault I smoked silly thing to do my mis spent youth I don't drink now don't smoke live on my own but still have a cracking good sense of humour I hope to keep that
You did not get sick on purpose. This is not your fault.
Thankyou that's so good to hear 😊
You should be able to do a virtual appt quicker if you aren’t breathing properly.. not sure what u mean if you have holes in your lungs.Cavities??. Have you given in a sputum and grow a culture to make sure you haven’t licked anything else up..maybe change your bronchodilator..
I don't know what he meant by holes either consultant at Brompton phoning me in march crazy long time can't get an answer from anyone about that no culture as I'm not producing anything hopefully when my hp back Mon can help but hasn't done so far
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