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hi i am new to this site i was diagnosed of emphysema 18 mths ago and still find it hard to accepted how do anyone else cope thanks

pinkpuffer profile image
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pinkpuffer
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kimmy59 profile image
kimmy59

Hello and welcome

The first thing I would do is ring the BLF helpline they're fantastic and will answer any questions you might have. 03000 030 555

As for coping I think we all have our own way of dealing with it, but your among friends here we all know how you feel.

There's lots you can do, I feel better now than when I was first diagnosed I've done a Pulmonary Rehab course, so exercise everyday and just try to keep myself as well as I can. But we all know depression can get a grip so again just come on for a chat someone is always around.

Kim xxxxxx

pinkpuffer profile image
pinkpuffer in reply to kimmy59

thanks kim but i find it so hard and act like there nothing wrong with me

kimmy59 profile image
kimmy59

We all do that. Have you seen a consultant what meds to you take. xx

Hi there and welcome to the site, you have done the best thing you can coming to this site.We all found it difficult when first diagnosed, its a lot to take on board, but your not alone as you are amongst friends here. Please take it one day at a time and you will get there, and be careful what you read on the internet(especially scaremongering American sites) This along with the wonderful BLF helpline are are wonderful form of support. Many people on here have emphysema and cope really well with it My Dad had emphysema ( I have Bronciecatasis and COPD) for 30,years before he passed away last year, for most of that time he managed to have a normal life with foreign holidays gardening and his allotment The important thing is to stop smoking (if you do) eat well and remain positive. Dont bottle it up talk to people about it .You will get there in time We are lucky to have some excellent consultants resp nurses etc in this country. I will echo too everything Kimmy59 has said too I did pulmonary rehab and it changed my life greatly for the better, also find out if you have a local Breathe easy group near you as being with like minded people will help. Take it one day at a time Best wishes Julie. xxxxx

Puffthemagicdragon profile image
Puffthemagicdragon

Hi and welcome pinkpuffer. As has been said, if you smoke, stop. The next best thing is exercise. I have very severe emphysema and still work at my part time job I had before being this ill. I do most things " normal " people do but I have to do it slower or rest more often. Apart from that I lead a normal life.

Lynne1955 profile image
Lynne1955

Good advice above and Puff is correct. No smoking but lots of exercise.

I am diagnosed as moderate but still work and do everything I always did. I go to the gym, have a full sized allotment and travel all over the pace.

As for acting like nothing is wrong, my friends and family know what I have and understand that I cannot walk as quickly as them, especially uphill. I also take the lift rather than stairs where possible, even if they chose to use the stairs.

Welcome to the site, is a real support.

Lynne xx

moneal profile image
moneal

Hi and welcome

You have definitely found the right site, having someone in the same position to talk to helps so much, you will find that things that really worry you are common to most of us.

My first stay in hospital was a real education, not so much from the staff but from the other patients. I thought the things I felt and did were just me, only to find that they all did the same, and felt the same.

So don't be afraid to ask about any related problem, the guys on this site have usually been there and can offer helpful advice and BLF Helpline is always there to give helpful and serious advice

You can discuss anything on this site that you dont want your family to worry about. There is plenty of support and laughter. Joyce

Hi, I am a carer for my husband who has COPD and the really feel the diagnosis is for both of us! I found the way to cope for me was to find out as much as I could by asking Doctors, Nurses, using the BLF helpline. I knew that pulmonary rehabilitation was a very positive step but it took my husband five years to come round to it!! That's not totally fair - when we asked the Doctor, her reply was that he was too well for it. Another year down the line and a particularly nasty infection we eventually found there was a specialist respiratory team and we were referred. The nurse did refer him to the course and he found the information about exercise and the disease invaluable.

As a result of that he joined the local Breath Easy Group (only meets once a month but has some pretty good trips!) and he has found much comfort in knowing he is not the only one and he can actually continue to live.

He has been diagnosed for over 8 years and continues to live a full life. I would be a liar if I pretended it was all plain sailing it isn't but with time we have realised we have to plan differently. We always take much more time on visits and trips and never rush. There is no way he can run down the platform to catch a train!

This winter has been particularly harsh and difficult for lots of people not just COPD sufferers though it is a very isolating illness and the reality is generally people don't really understand.

Try to stay positive - you are likely to live a full and happy life even with COPD! Good Luck! lots of love TAD xx PS This forum is fantastic especially when you feel a bit low, you will lots of useful advise.

beatles profile image
beatles

Hello Pinkpuffer, most but by no means all, people on this site have COPD which Emphesyma comes under by medical definition. I have same and lead a good life, although I have had to adjust and slow down a bit, I still travel abroad frequently.

I was diagnosed last August but have had symptoms for many years, I am convinced I was in denial as I was a heavy smoker. If you still smoke STOP ! . Sorry to be so proscriptive but you will only get worse.

Ask your GP to arrange an appointment with a specialist who will ensure you are tested through a harmless procedure called Spirometry which will indicate the extent of your condition. With these results the correct treatment and medication can then be applied. As Lynne and Puffthemagicdragon have both said, an exercise programme such as Pulmonary Rehabilitation will be of massive benefit. Keeping active is critical.

It is difficult and scary to begin with, but try and stay positive and stay involved with this site as it is a complete lifesaver with truly good and compassionate as well as very knowledgeable people, I know I have learnt so much. I wish you good luck....Adrian

when I accepted it rather than denied it or felt moany ---- it got much better because I could then start taking an active management role in it. :)