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aalayah profile image
24 Replies

Hello e1 I just joined today I was diagnosed with emphysema 2 days ago im a nervous wreck. Think im going to die like tomorrow. Im so scared please sunone help.my dr gave me an inhaler to use but thats all so far.Im so panicked n sad.

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aalayah profile image
aalayah
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24 Replies
kimmy59 profile image
kimmy59

Evening.

Welcome to our little family. First thing your not going to die yet, stop the googling it's all nonsense. There are people on here that were diagnosed 20 years ago, one thing about this illness it's different for everyone. So if you smoke please try and stop, get a healthy diet going and ask your GP to refer you to a Pulmonary Rehab course, where they will teach you to exercise safely, you'll learn about medications. diet depression and lots of other things, plus you get to meet people with the illness. It's not a death sentence you just have to learn to do things at a slower pace.

Your not alone someone is normally on line day or night.

Kim xxxx

aalayah profile image
aalayah in reply to kimmy59

Cries reading thankyou kimmy hugs and I will do what you said. I ve been googling for two days trying to learn whatto do an what to expect. I looked up life expectancy for emphysema and it said 5 years

helingmic profile image
helingmic in reply to aalayah

At least, aalayah, through Googling you found us. As Kimmy said, You can live with this disease. It frightening to be diagnosed at first, but with a good diet, a good consultant and as Kimmy said, if you ask to be referred to the Pulmonary Nurse, she will tell you all about your illness. Most of all you can ask about what makes you so fearful. It will take the uncertainty off and give you confidence.

I had bronchiectasis for 20 years. My best friend is the gym!

I also take cod liver oil with Vit D, and Vitamin C with zinc. Zinc is supposed to reinforce your immune system. Perhaps this might work for you too; you need to build yourself up for the next few weeks, Try to get a flu jab too and avoid as much as possible people who cough (especially those who say that thre cold is nearly finished!!! Don't believe them, they are contagious, especially for us). Kepp your head up. You've come to the right place. Take courage.

you have done the right thing coming on here - you will get some great advice :)

aalayah profile image
aalayah in reply to

Thankyou eyes I think I did too.God put me here to find friends and I have :)

Suzy6 profile image
Suzy6

Hi aalayah, kimmy has given you some good advise. Cheer up hun, I have Emphysema Fev1 32% No way am I going to die yet a while. Keep active, positive, eat well. Go to Rehab when offered. I'm on my last day of rehab tomorrow. Thoroughly enjoyed it and learnt a huge amount of useful info. Many on here are worse than me many better but you will see if you stay with us everyone helps each other xx

aalayah profile image
aalayah in reply to Suzy6

Thankyou so much suzy. When you say rehab what is that please? I don't know how I found yall but im so glad I did. I feel a little more calm now. Is everyone on here in the UK? Im in the US in Pennsylvania

aalayah profile image
aalayah in reply to Suzy6

Ohim not going anywhere suzy and hope I can help others as I learn too

Suzy6 profile image
Suzy6 in reply to aalayah

Hope this link works

webmd.boots.com/a-to-z-guid...

Some are in US, Australia, That's the spirit.

aalayah profile image
aalayah in reply to Suzy6

Thankuou so very much suzy hugs

Suzy6 profile image
Suzy6 in reply to aalayah

Your welcome aalayah, I'm off to bed now. Take care xx

rockett777 profile image
rockett777 in reply to Suzy6

morning Suzy6 glad to here your enjoying rehab. Hope it has really helped. May today be a really great.xxxxx

Suzy6 profile image
Suzy6 in reply to rockett777

Hi rockett. yep it was a great day today. Last day at rehab. after our exercises we had tea and cakes a natter and many laughs. We were such a friendly happy group it was a truly wonderful six weeks. Hope you had a good day. xx

grannybell profile image
grannybell

I was diagnosed with emphysema 8 years ago and I'm still here. Don't let it get you down. Where there's life there's hope. Take care. X

Louisiana profile image
Louisiana

Welcome to the group! Of course you are feeling frightened...your doctor obviously has no bedside manner! PLEASE stop worrying about dying.....lots and lots of people have emphysema and are alive and kicking. I was diagnosed 10 years ago and I am still going ...admittedly we have to learn to take care of ourselves but that's the case with any illness. Try not to panic, as that will make you breathless. I have 3 inhalers and have learned how to use them properly. I am hoping you will get that kind of help over there in America. There are other people on this site that live in the States so I am sure you will be hearing from them. Keep posting, keep asking for help and information (from the right sources) and STOP panicking. Sending you lots of good wishes. :) Also, perhaps you could talk to a BLF nurse?

Hi welcome to the group and nice to meet you. I can only reiterate what the others have said. You are not going to die for a long time yet so don't panic. Although emphysema is a progressive disease you can do a lot to slow it down by following the good advice you have been given on here. Stick with us and only google recognised sites not the scaremongers. x

O2Trees profile image
O2Trees

Hi Aalayah - welcome and glad you posted here to get all this great advice. Most important is the exercise and avoid infection as far as humanly possible.

5 years survival is rubbish. I was dxd 14 years ago and still going strong, expect a good few more as Im not going anywhere yet :) :)

Puffthemagicdragon profile image
Puffthemagicdragon

Hi aalayah. I was diagnosed with very severe emphysema 3 years ago. I haven't got any worse, in fact I feel better than I did then. Give up smoking, if you do but keep active !! They are the 2 most important things in my opinion. :)

Hello and welcome to this site, STOP googling!! It will send you into a state of panic! I care for my husband who has severe COPD and has had it for over 12 years. He still works full time, we still have a great quality of live just a lot slower than most others! I cannot imagine you will die from COPD tomorrow!!

I would recommend you ring the BLF helpline and ask for their leaflets - they have some really good information. They will also be able to advise what sort of care you can reasonably expect from your Doctor. My husband was given the diagnosis and an inhaler and off we went! My advise would be to take as much control as you can and my tips are:-

1) If you havent already stop smoking - absolutely essential to stop any further damage

2) Exercise - you have to fight this COPD and you need to keep as fit as you can

3) Flu jab - a must

4) Pneumonia jab - a must

5) As soon as you think you are getting a chest infection - go the doctors and get some antibiotics. I am sure that some of the damage done to my husbands lungs was due to his reluctance to go the doctors! The nurses told my husband if two of the following three worsened go the doctors - more shortness of breath, more coughing, change of colour of sputum.

6) Ask for a referral to a pulmonary rehab course - it is about 6/8 weeks of monitored exercise and information which will help to put you in control! It was a life saver for my husband but when I initially asked I was told he was not ill enough! So ask and ask again!

7) Find out if there is a specialist respiratory team in your area - you may need to ask your doctor for a referral but the nurses can be really helpful and fast track to a consultant if necessary

8) IF you dont think your inhalers are working - go back to the Doctors. There are lots of different medications available. PLEASE do not assume you have to suffer.

9) Take as many precautions as possible to avoid colds and coughs - COPD sufferers find it more difficult to recover from them.

9) MOST IMPORTANTLY please enjoy your life - you can continue to live and enjoy life truly!!

I hope that isnt too much information and I hope that it helps you to be more positive. I just wanted you to realise there is life after COPD and it can be good!

Lots of love TAD xx

Offcut profile image
Offcut

I think all that needs to be said has been. Sometimes a little knowledge can be dangerous! I do use the WonderWeb a lot to research all sorts of things. I have a long list of ailments and if I took in all of what I have read I would of gone a long time go? It does not work like that. I have found if you really want to find out about your problems look at medical sites and the latest papers. It takes time to go though all the medigabble but a better way forward.

It was not that long ago they treated Asthma with sedatives.

I also have a few heart conditions so I have just finished Heart Health: A Beginner's Guide to Cardiovascular Disease from Reading University. It was fascinating and now I see glaring errors in another site I am on from people that think they know the condition (but are not doctors) Even when I quote Tutors they say they are right?

Positive Mental Attitude is your best friend and always worth listening to.

Be Well and Welcome

Christine18 profile image
Christine18

Please listen to what people on here have to say...they truly are life savers. Your life is not over a new way of life is just beginning.

Hugs being sent to you.

barnowl1 profile image
barnowl1

Please try to keep calm. There are lots of medicines to help you and I agree with all that has been said do far. I was diagnosed 7 years ago and I did not know that there was anything to help. Consultant said don't worry the damage is done and just go away and enjoy life. I did so and because of other problems concentrated on them. 6 years and then had pneumonia and found help from new doctors and of course this wonderful site. I am still able to do most things. Hopefully you will be the same, so don't look to far ahead and find out from your g.p. how bad you are and then start your plan with the help of trained people. Take care and good luck barnowl

postscript profile image
postscript

Don't panic. Stop smoking and you should be fine. I was diagnosed five years ago almost to the day with 'moderate emphysema'. I stopped smoking and quickly felt a lot better and nothing much has changed since, lung scores pretty much the same, still working and walking the dogs. Ignore the scare stories ...lots of people on this site have had COPD for many many years, and keep on keeping on. Be positive and most most important, don't smoke. All the best X

Hi Aalayah,&welcome to the site! You have been given great advice,from wonderful people that care.You have definitely come to the right place!

My only input will be to tell you,it's almost 20 years,since I was first diagnosed with COPD,& I'm definitely still around,so don't panic!! xx

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