Sorry I put my question in the wrong place
Im a new to the site just found out I have moderate Emphezma. Doctors dont want to say much about the stages or what to expect. I'm scared to be honest
I think we are all scared when we are first told it could never happen to us other people but never us. My reaction was researching finding things that held my fear now this way is not for all as some find scary stuff that makes it all sound worse than it is. Coming here chatting with experienced members calms the scary parts stay and chat Sueinks54.
Hi it is scary, but this link should give you a better understanding: blf.org.uk/Page/chronic-obs...
It is a slowly progressive disease, so stop smoking if you haven't already, eat a good balanced diet, keep away from air pollutants, exercise, and most of all have a positive outlook on life!
Chatting about our conditions helps, and we can all pick up useful tidbits on coping techniques. x
Sueinks54, everyone is shocked when first told,that is natural. We all make mistakes on here when posting too, so stop worrying you must now look at dealing with your illness and future with a chronic illness. Welcome to the site and if you have questions just ask I know there will be someone here who can help answer it for you. take care
Hi Sueinks54, I care for my husband who has severe COPD and lung function of 25% having said that he still works full time, we still have a great life just a bit slower than most!
I had written this post a while ago - and thought it might be helpful......
There have been a number of posts from very frightened people having just been diagnosed. I have been answering posts and putting in my thoughts when I think they could help. But it occurred to me that the most worrying thing about COPD is the chronic element. Usually we go to the Doctor and get a tablet which makes a vast improvement or cure (simplified but you get the gist!) - COPD is a different beast altogether.
Each patient is different, each patient has to become an expert patient by listening to their bodies, learning what triggers an exacerbation or makes you more breathless or starts the coughing and to keep asking the doctors. If you don't feel right go back to the GP - our lovely doctor agrees that my husband and I know more about his illness than she does.
If you have been diagnosed please talk to the BLF helpline and ask questions of your gp and nurses. If you think the medicines aren't helping go back and ask them to be changed. Come on here and ask questions. If you don't feel well ask for advise. These would be my top tips:-
1) Stop smoking
2) Keep fit - ask for a referral to pulmonary rehab. from your doctor/nurse and keep asking!
3) Get a flu jab
4) Get a pneumonia jab
5) If you think you are starting with an infection - go to the doctors don't wait
6) Take your meds. If you are having side effects go back to the doctors, if they aren't working how you hoped - go back and ask. There are lots of meds available.
7) Listen to your own body and learn - you will know best
8) ENJOY YOUR LIFE - things may change and alter but they would anyway - enjoy each day. The good memories will keep you going when things aren't as good!
Take good care, TAD xxx PS My husband was diagnosed about ten years ago!
Real good sensible advice TAD and clearly put. I would add one thing.....Make contact with your local Respiratory team and get your advice from them.
When I go to my GP, my surgery COPD review, hospital consultant and respiratory team, I end up with four lots of contradicting advice. Who's do I take.....my respiratory team every time. They are the real practical experts, they do it all day, every day and they will bring in other specialist therapists too without the delays associated with doctors referrals etc.
Way to go!! everything you said is on the money. great job.
Hi Tad, is the pneumonia jab a yearly one,
I too have emphysema and Bronchiectasis ( just to keep the emphysema company)
I only found out I had emphysema this week But I had been told in the past I had COPD which I assumed was Bronchiectasis, wrong.......That was about 14 years ago when I was diagnosed with asthma.
I will freely admit I was so depressed, but now, I am looking to the future and hoping to be around for a long time yet.
Ask questions look for help and never refuse anything , eat well, exercise and get the doctor to get you the proper meds you need along with PR and find out where you can join the local Breath easy group.
Life`s good, so here's to a long life.
Lovely, positive post, Tom. x
It took a while, but I am coming round to the idea of seeing 80 at least.
You know what, It is all thanks to the many genuine people on this site and another, who have inspired me so, so much.
So thank you all for all the advice and support not to mention the kindness you all have shown me and each other.
I have to recommend that you follow the link on Initials post.
It is good strong advise and information.
I know I posted you earlier but I have spent the afternoon looking at the link and I think it would be so helpful for you.
It's sounds so frightening but, as has been said, different strokes for different folks! My neighbour had it and he was well into his eighties before he gave up swimming - they had to ban him because he was more at home in water than on land. The guy who does my garden has it - I've tried so hard to get him to stop smoking but failed, even though he sees me using my e-cig he still has his "rollies" - his life, his choice. When he's missing for a week or two I know he's having a bad one. Fresh air, exercise when possible, healthy diet all help - and don't write yourself off, there are worse things.
I was told that I was lucky to see 10 years. That was 14 yrs. ago. Have another doc. They really don't know. The meds are changing all the time and it takes time to find the right ones. I still use my treadmill, not as long or as fast, and on 02, 24/7. But I'm still here. Don't drive any longer and use a walker. This is a slow diaese and if you don't like this guy find another if you can. I was told I was in the last stage???? Go to the internet, there is a world of info for you.
I'm not going to repeat the lovely advice from others, but I'd say don't give up. You may feel upset by the sort of feelings you have, but take charge of yourself by asking questions at the BLF helpline, your pulmonary team (if you haven't got one, ask for a referral to it). work with your doctor to get more information. For instance, if he/she does tests, ask for the result of tests and what it means.
The pulmonary team has nurses, physiotherapist, counsellors ( I used one once, most helpful) and other qualified people who can really help provide what you need. I was in hospital last week, The staff nurse told me that I SHOULD sit up to get better. she pulled the back of the bed and told me to lie on my back. It did work. but at the end of my stay, I pointed to the physio that I have no such bed at home, could she provide with a back rest so I could sit up in bed. Lo and behold, she produced the back rest. This was wonderful. so you have to ask around, don't be shy, this is your health!
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