Hello, I'm new and recently diagnosed with Emphysema. The specialist explained nothing so I am very anxious about the future. I have recently spent a week in hospital with a bladder infection and am finding the slightest exertion is making me very breathless. Does anybody have advice to improve my breathing? Thank you
John Ling
Hi and welcome. There is a lot of information on the BLF website about how to live with lung disease which I think you will fund helpful and be able to read at your leisure. Best wishes.
Welcome to you captainchaos1. Sorry your specialist hasn’t been very forthcoming with info. Are you on any medication at all? I dare say the bladder infection took it out of you and hope you’re recovering well from that. As to your breathing, I’d contact your specialist again and tell him how you’re feeling. You need the best treatment any doctor can provide so don’t be afraid to ask. Take care xxxx
thank you sassy, i am seeing him via phone on 22nd and my gp on 31
Is this specialist a specialist in respiratory matters?
Yes, he's the top lung man at North Middx Hospital, a very big one, thanks for replying
Trouble with top men is that they so often leave the basics, such as essential information, to the lower orders who are very good at explaining stuff. If I were you I would ask at your surgery if they have a respiratory nurse. Some are just have asthma nurses who are great but it varies how much they know about copd.
Ask your GP to refer you to pulmonary rehab. It's a series of exercise and education classes taylored to needs of lung patients and a lot of their participants have copd. Some areas will have these on zoom now due to covid. But insist on your right to have advice about life style adjustments, exercise and diet.
Also ask if you need an inhaler to help you cope with breathlessness. You dont say what stage your copd is at and likely you wont have been told. But no-one should be left breathless without the alleviation of it being discussed with them. Our experience here is that we need to be proactive in getting the help we need so dont be put off!
Good luck - lots of good advice on this forum, so glad you've found us 
Thank you so much, I have an inhaler, twice a day, but Ihave an appointment with specialist on 22 (phone) and my GP (a lung man) on 31st. I will bring these points up. Thanks
When you have your appointments, ask for a medication review as your inhaler isnt coping sufficiently with your breathlessness. It can take a while to get the best one for you when you are newly diagnosed.
Thank you, I will. CC
You could ring the British lung foundation and ask for a nurse, so they can discuss things with you. Consultants tell you not to google, but don’t signpost you to any information. Sources. I found this forum so helpful. We support him other.
Thank you so much, following your advice, youre very kind. CC
Captain chaos, I am relatively newly diagnosed too, although with a different condition to yourself.
When I saw my consultant about a month ago, she spent a lot of time with me explaining a lot and listening to what I had to say too. Part of those discussion covered the small pile of leaflets and information sheets in front of her, but she stressed a couple of telephone numbers on there - one for the specialist nurse team and the other for the specialist pharmacists, should I have queries after I left the hospital.
I had quite a long chat with one of the specialist nurses yesterday as I had a specific question around testing. Nothing seemed too much trouble. This numbers are "open" all day, but it usually involves a message and call back as they pick up calls in between usual activities.
I wonder if your clinic might have something similar?
My advice before your appointments is to start a list of things you want to know, so that come the day you don't forget anything.
Thank you MMaud, everyone is so kind. I will check all this when I see sprcialist and GP, great idea about list
Hello John and welcome. I was diagnosed with Emphysema almost 32 years ago and I am still here and managing ok so do not worry to much. I find the most important thing is t eat healthily and exercise. Ask your GP if there is a local Pulmonary group you can attend as they are excellent. Apart from doing the required exercises which you do at your own pace, you will learn all about your condition so its really beneficial. Stay warm and safe.
Wow, inspirational, its the breathlessness after exercise that floors me, will it get better. John
It may it may not. I always use my ventolin inhaler before any exercise and afterwards just sit comfortably and breathe in through your nose and out of your mouth until your breathing has settled again. Works for me
Totally agree gingermusic
Hi and welcome captainchaos 1. The BLF site will have information. It’s strange how you didn’t get leaflets or advice. Take care x
Thank you, am investigating. J
Welcome to the forum. Please ask any questions, there is usually someone who can offer some sort of help or just have a chat if it helps. John
Hello and welcome to the forum. You will find lots of support and information on here from our lovely members. As they have mentioned, if you would like to have a chat with one of our nurses who can advise you on the general management of your lung condition, you are very welcome to call us on 03000 030 555. We are here Mon- Frid 9-5.Take care
Debs
Hello captainchaos1 , Welcome to such a special forum. In addition to the welcome when I joined earlier this year with mild COPD, it was reassuring to hear that it is possible to live a relatively long time with COPD. It’s not all doom and gloom.What really has helped me is learning to use abdominal muscles rather than above the diaphragm, to breathe. This has slowed down how fast I would sometimes breathe and eased some congestion/tightness when breathing.
Drinking more water helps to keep any lung secretions easier to loosen.
I also invested in a peak flow and oximeter.
Our GP practice is not forward in giving advice, and the nurse adviser on BLF has given good advice as to my spirometry results.
You never stop learning in this life!
Warm regards, Lupino 🤗
Thank you Lupino, helpful and reassuring. CC
You might find joining a singing for lung health group very helpful for learning to control and strengthen your breathing muscles. The BLF has a list of them in the UK. You don't have to be able to sing well to join. If you're not confident in a group, you can always try diaphragm singing exercise videos on YouTube. Or visit my groups YouTube page, youtube.com/channel/UCGvJ9E...
Wishing you all the best.
Thank you Ergendi, I have actually applied to a group in North London who are restarting in January. Thanks for your advice, CC
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