Hello, I am new to this forum but I really needed to talk to someone. So, I have stage 4 emphysema. My drs haven't told me anything about the condition. I have either learnt about it from living with it or looked up on the Internet. I have had a test on a machine and that's when the nurse said that I had emphysema. I currently have a blue inhaler (salbutamol) and a grey inhaler (trimbow). I have a nebuliser which I bought. I don't have a rescue pack at home, my dr had never spoken to me about it. The only time I have medication is when I ring my drs when I get bad. These last few days have been really bad, I've been struggling to breathe when I walk so I rang my drs to be told there is nothing more they can do for me. And that was it. It's left me feeling really frightened. What did she mean?? Is that right?? I'm only 43. I have a chest infection and need medication. To be told that. 😢😢.
I feel lost: Hello, I am new to this... - Lung Conditions C...
I feel lost
Welcome here WW
You don't say when you were diagnosed, how long have you been living with it WW.
You know you have stage 4 emphysema so I am guessing you have seen a respiratory consultant previously and had a CT scan and other tests. Your GP would not be able to diagnose Stage 4 emphysema unless he is also a qualified respiratory consultant.
If you have'nt already attended a pulmonary rehabilitation course ask your doctor or respiratory nurse for a referral to one, whether that is on-line or in person as lockdown eases.
You know enough to identify when you have a chest infection, so you will know also you do need medication for that. Antibiotics and prednisolone is the general emergency pack.
You are 43 I wonder if you were ever tested for Alpha1, if not I'd say request this and if that is your diagnosis referral to a consultant.
Please call the BLF helpline on Monday and relay what you have said here asking what would be advised and recommended by BLF nurses on the helpline regarding your situation.
You will likely know that emphysema comes under the banner of COPD, you may want to do some reading before speaking to the Helpline on Monday.
For both Helpline and information on COPD / emphysema.
check out these pages: blf.org.uk/support-for-you/...
Just because you have stage 4 emphysema doesn't mean your GP surgery stops helping you with health concerns. Lung infections need treating no matter what stage. I wonder who it was who said there is nothing more they can do, was it the doctor or the receptionist. If the latter request a telephone appointment with your doctor. If it was your doctor who said this, I'd say see another doctor but see what the BLF suggest concerning this too when you call them on Monday.
Chest infections should not go untreated.
blf.org.uk/support-for-you/...
Excellent advice. Please follow it and keep in touch, 🥀Whitewitch, let us know how you go on. You are not yet being looked after correctly - but will be. Don't dwell on the stage4 thing. Who on earth told you that - or did your own research do it... There is a fine line between informing ourselves & scaring ourselves half to death! Like others here, I have COPD, I use the same medications as you. But I have the mentioned rescue packs by me & have been taught how to use them. Plus experience. It's a team: Drs, meds & ourselves.
Don't be frightened, honey - we're all rooting for you. Good🍀luck & God bless. 🤗
Hello and welcome to this forum. It does not sound as if you are getting the treatment you deserve. I am appalled that your doctor has refused to help you. You are also a bit young to have emphysema so badly. I think you need more information, possibly more tests. Is there another GP you can speak to? It also does not seem right that your diagnosis came from a nurse, I assume that she/he was a respiratory specialist? They can be good but should liaise with a doctor. Emphysema almost always has a cause. There is an uncommon type, Alpha-1-Antitripsin-Deficiency, which is diagnosed with a simple blood test.
I think you should push for more clarity.
Let us know how things go.
Kate x
Hello+ welcome. Great advice from Bkin.Do ring dr or 111 for antibiotics urgently,today. Infections must be treat as soon as poss,
Drink plenty of fluids,stay away from people with colds+bugs,keep as mobile&active as u r able. Also,if u produce mucous,read up on lung clearance techniques as ths will help u manage& prevent lung infections.
Life does go on,we just learn to move our goalposts xx
Can't add to the helpful posts above but just wanted to give you a warm welcome.
Welcome to Health Unlocked, Bkin's, Katinka45 and Patk1 replies to you are all very good advice. I hope that you can get some help soon as I agree chest infections should not be ignored. People on this site are always very supportive, which is very comforting, and there is some humour as well. Sending you lots and lots of best wishes.
Welcome to the site I can't add anything to good advice you've been given. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
That’s shockingly poor ‘care’ you’ve had. Thankfully lots of good advice from people here. I haven’t got anything to add other than to say hello and welcome, and I hope you’ll find the support and information you need here.
Welcome to the forum. The attitude from your Medical Centre has been very unprofessional, you certainly need medication for your chest infection. There is nothing I can add to all the good advice given in the above posts. Hope you get some answers soon xxx
Hi from another stage4er. Agree with all that has been said. Strongly suggest you get yourself to the nearest hospital today. The worse possible thing at stage 4 is an acute exacerbation quite possibly leading to pneumonia. Once at hospital you will get the attention you need. I advise you not to hesitate. Do please come back and post when feeling better.
Welcome to the forum. It's sounds awful that your GP told you that they can't help you anymore....I am speechless. That they didn't assign you to see a resperatoriy consultant to discuss new option for you and get pulmonary rehabilitation. Really shocking that they didn't get you medication you really need.
But I do agree with Bkin, that you should definitely get in touch Blf support to have a chat about your current situation. Don't worry, they will help you to get on the right path again to make sure you getting the help you need.
I hope you can get help on Monday so please call them ☺️ you are not alone here so keep us posted 😊 keep safe and warm 🍀🍀🍀
Just saying high and agreeing that ringing 111 this weekend may be advisable. Lots of other good advice given. Keep in touch.
Welcome to this very friendly, informative forum Whitewitch. You’ve had some great replies so hope they’ve helped.
Take care and hope you get all the help you need. Don’t take no for an answer. Xxxx
Welcome Whitewitch. Do call BLF helpline and I look forward to hearing how you are getting on. There is life after diagnosis 
Great advice above btw.
No thats not right. if you have a chest infection you need medication to clear it. Call your dr and tell them. If you are struggling to breath call 999 a&e will start you on antibiotics. When you are feeling able cal blf and ask if somone thear can explain about your ilness. They are briliant. Even at stage 4 you can live to be a old age. Tell your dr if he dosent understand or cant do anything for you , you want to be referd to a lung specialist and at 42 you would like a alpha one antitryipsin deficiency blood test. Just as others have said 😷
Phone 111 immediately and tell them your symptoms.
A chest infection should not be ignored, especially if you have Stage 4 Emphysema.
Bkin has given you some really sound and clear advice to follow.
Good luck! Please let us know how you get on. xx Moy
Welcome to the forum, Whitewitch. Hope the excellent advice you've had from people who know more about your condition than I do will reassure you. I feel your surgery's clumsy/inept/ shockingly inefficient handling of you case has frightened you needlessly. There are plenty of people on this site living pretty full lives with bad emphysema. 🍀🍀🍀🍀
1883 I can only wish you the best of luck and my own experience with 111 was excellent.
Well it doesnt sound as if your dr is v interested.But since this covid that is all they care about
Ask for a letter for the hospital say you need help
Your dr will probably say go up a&e dont be fobbed off demand a letter to see a specialist.
You hear about this one and that one has human rights
so do you my love
best wishes
I also have stage 4 emphysema you should have a emergency pack at all times steroids andantibiotics I have never had any problems on getting them you should always have them at
home i cannot understand why they say that there is nothing they can do there is a lot they
can do better medication certain exercises blf have excellent videos on this I would not be
frightened with care and management you can live a full life I would ask to see the the
doctor face to face to discuss treatment to say there is nothing they can do is rubbish
you could as last resort try changing doctors i would like to ask a question did you get
a shielding letter or an email for covid19 if not why not if you did you are extremely
vulnerable and that should be enough to wake up your doctor to do something
keep your chin up
Dear W42,You have been given some excellent advice on here in response to the question you posted. I’m sure that I don’t just speak for myself, but I wonder if you could answer some of the questions which many of the experienced members on here have replied to your post with?
I ask because I for one had a similar experience well over a year ago with doctors over a chest condition and had I known about this board at the time, I would have had less worry laid upon my shoulders. I am thankful that I found this board because the advice given and reading other people’s experiences answered a lot of my unknowns for which I am most thankful.
Meanwhile, wishing you all the best for a healthy outcome. We look forward to reading your update.
Take care. T57
Good advice above. Would just like to say hello and welcome (and if you can't get any better advice/treatment options or referrals from you GP, then look at changing). Good luck with everything.
Welcome - you're in the right place! People here have a wealth of information to share and how to navigate the health care system.
Others have given you specific information so I'm just giving some solidarity with you. One of the worst thing about our illnesses here is that sometimes (often) we are left to our own devices without knowledge or idea what to expect. The fear of the unknown takes over. I think doctors are so used to these diseases that they forget we no nothing about them - and get stressed and panicked by the fact that we have no idea what to do or what to expect. Once we start finding out, and getting the right doctor etc to explain, it's much easier but for the life of me I can't see why they don't give group sessions for newly diagnosed or worried people. What I'm trying to say, is to keep pushing politely for knowledge and from a multitude of people, as each doctor etc seems to gives different help / new information and cumulatively that should help release some of the fear.
Whenever you need support someone here will be able to point you in the right direction.
Don't wait until Monday. Go to the hospital for immediate medical attention.
You definitely need a new dr ASAP. I’m hoping you r seeing a pulmonary dr.. go to the hospital and get antibiotics ASAP..he should be reported for his unprofessional behaviour..there are many things he should have told you to go..airway clearance, aerobika to help clear your lungs..nebulize saline..should always have emergency antibiotics..maybe the hospital can help with a referral
You definitely need to go back to the doctors and demand some help! You should have a rescue pack too as exacerbations quite often happen when the Surgery is shut, or ring 111
You need a rescue pack to be kept for such emergencies. This is steroids and anti biotics. They work wonders and you need to start on them as soon as you feel a deterioration in your health. You can also get a liquid steroid capsule for your nebulizer. Please don't over do the use of blue inhaler as this can make your heart and pulse rate increase and your breathing rapid. My husband did this and we had no idea of the consequences. It gave him a panic attack but used correctly these things really do help.
Welcome. Everyone has given such wonderful advice. As a recently newly joined member I can assure you of a wonderful welcoming community here. Be assured of support and excellent helpful advice. Thinking of you with concern. The Surgery Respiratory Nurse is wonderful for me and works quickly. Take good care of yourself. Wishing you all the best for a happier outcome in the coming week. With concern.
Glad you joined the group, WW. The support here is world class. I hope you’re feeling more comfortable soon!
All good info on here which you have already received. I would suggest also NAC which my integrated health doctor put me on. Loosens phlegm to more easily expel. It works. Yeah, sounds like you need a new doc. Go to emerg if you have to. Nothing to mess around with. Good luck. ❤️
Hello,Firstly, I applaud your bravery and courage albeit that doesn't give you the help and guidance you clearly have been seeking.
I don't see any mention of you having been referred by your doctor to a respiratory consultant at either your local or a specialist hospital and strongly advise that you ask for this to be arranged AS A MATTER OF URGENCY.
It should also be possible for you to be helped by a local Respiratory Care Team who should be able to provide you with some rapid support.
I would also strongly recommend that you reach out for some psychological support, as I have had to do, because this side of things can be equally challenging and important.
Finally and most importantly, please don't let "them" put you off for Covid-19 or any other reasons as, clearly to one who ha severe respiratory challenges, you shouldn't be allowed to be neglected for any longer than absolutely necessary.
All blessings to you.
Welcome . Read the posts here and follow their advice. Talk to the nurses here too . I have myself learnt more from this group than I was ever told by doctors and consultants.
Hello and welcome, i am new ish too. I was diagnosed with moderate emphysema in January this year by my doctor. She cannot do anything more before receiving a clinical evaluation from a consultant, so i am in the cold at the moment. I have good and bad days, she did prescribe me the blue inhaler for the time being. I cannot add more than what other have wisely advised other than you are not alone amongst us. x
Hi W.W
Welcome to the group.
Hopefully you have managed to reach your GP or called us at the Helpline already, but if not and you still would like to speak to one of our nurses for advice on your emphysema, don't hesitate to call us on 03000 030 555.
Take care
Debs
Thank you all so much for your comments and for making me feel so welcome. So, I rang my drs again and they told me to go to A&E. I researched my local hospital online and found the respiratory department. I left them a voicemail and someone rang me back yesterday and they are coming out to see me at my home on Tuesday 23rd March. Last week I was so frightened, my peak flow wouldn't go above 60. My partner got me a nebuliser and I managed to get some nebules from the asthma nurse at my drs. I keep swelling up, I now have muscle wastage in my legs and calves. I honestly felt like I was dying last week. I just want to know how serious this is. Am I going to die. Do I need to be talking to my family. I seriously know nothing. I'm Just so scared. I feel like I'm fading away and I need to fight back. I have no support except for my family. I just hope on Tuesday when this breathing nurse comes, that they can put my mind at rest and explain everything properly to me and what they are going to do to help me. I'm so sorry for the sad post, I just feel so lost. Thank you all again for your help and support and advice. Love and light to you all xxx
Hello, glad to hear someone is coming over to you, you will get some answers as to what is happening and treatment and in the meantime your partner supporting you. Don’t feel bad, remember we are all here to support one another for the good and not so good times. Hope you are doing ok today xx
Hi, sorry for the late reply but I have been really unwell. Thank you for your kind message, the breathing nurse from the hospital came out to see me and sorted me a rescue pack and arranged an appointment with the lung specialist on 19th April by telephone. At least I have an appointment whether it be in person or by telephone, finally someone to listen to me and help me. 😄. I hope this message finds you well xxx
Hi there, I am sorry you have been so unwell. I know how difficult it is when you don’t have any answers, make you feel isolated, but glad you have finally an appointment. I too have been without help since January. I have a lung function test in May. Stresses me out because I worry if it’s worse than I think it is. Please do keep in touch and let me know how it went. Big hug to you 🦋🌈🤗
THAT ATTITUDE ISABSOLUTLY DISGUSTING. ALL PEOPLE SUFFERING FROM BREATHING PROBLEMS SHOUDL HAVE A RESCUE PACK AT HAND AND WHEN YOU RING DR HE WILL ADVISE YOU IF YOU NEED TO START. MEDICATION
Hi, sorry for the late reply but I really haven't been well. So the breathing nurse from the hospital came out to see me and he arranged for me to get a rescue pack. I am having a telephone appointment with the lung specialist on 19th April so I will be able to tell them everything that is going on and hopefully they will be able to help me. I hope you are ok xx
have just signed up to this forum. I am so sorry to hear you have stage 4 Emphysema at such a young age. Have you asked about Zephyr Stents. A procedure to help you breath better. Here in the UK there are about three hospitals that can do this. You need all the tests to see if you can have this procedure. Not all Emphysema sufferers can have it. Good luck and best wishes
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