Very scared. Newly diagnosed - British Lung Foun...

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Very scared. Newly diagnosed

MiFerna
MiFerna

Hello all.. yesterday I was diagnosed with mild emphysema picked up by a CT Scan. I haven’t talked to my GP about it just yet. I am a 46 y/o. Very scared and confused. Last night I only slept 1.5 hr, cannot stop thinking about how long I’ve got to live and how I failed to my wife and two little daughters.. so worry.

35 Replies
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Hi, You will get lots of support on here. Sorry I do not know a lot about your condition. Please talk to your GP and get as much information as possible.

MiFerna
MiFerna in reply to mary1956

Thanks Mary.. I suppose he will call me once he receive the results from the CT clinic. I’ll keep you informed.

Hello Mi Ferna,

Stop! Take a gentle breath in through your nose and blow out gently through your mouth (like blowing a candle enough to make the flame flicker not go out). twice more.

Hopefully you are a bit calmer. (We've all been in that terrible place called newly diagnosed)

People with mild emphysema don't die on the spot.

Managed well they live for years.

blf.org.uk/helpline will lead you to the best information you can get.

Don't look at Dr Google, there are some very inaccurate things on the net. A lot of silly sites saying you will live only five years. If they were true most of us on this site would be long gone.

A reasonably healthy diet (don't beat yourself up over the odd unhealthy treat), as much exercise/activity as you are comfortable with, plenty of fluids(decaff is better for tea/coffee), not smoking, all these help.

Welcome to the forum xxx

MiFerna
MiFerna in reply to wheezyof

Hi Wheezyof...it is quite difficult at the moment to think in something else.. thanks for your advice.

catgirl1976
catgirl1976 in reply to wheezyof

Take what they say on Google with a grain of salt and stick to official sites like NHS direct.

wheezyof
wheezyof in reply to catgirl1976

That's just what I said. Not Dr Google and suggested blf.org.uk/helpline. Glad we agree.xx

Hi. I can tell you worry wont fix this. You have not faild anyone. (You got unwell). You have got alife time ahead of you IF you take the advice given to you. If you smoke stop now. Exercise as much as you feel comfortable with. Eat healthy . Talk to your dr and take any med as prescribed. If s/he gives you a inhaler ask for a spacer to use with it. As you are so young ask for a alpha one antitryipsin deficiency blood test. That could be a big part of why you have emphcemia so young. Please keep in touch with us on HU we will try and help or at least guid you in the right direction.😷😎

MiFerna
MiFerna in reply to corriena

Hi corriena, I smoked for years and quit the morning when I started to feel weird symptoms (23 March,same day as lockdown was announced).. trying to keep active and eat healthy.. Let’s see what my dr has to say later today.. thanks for your words.

corriena
corriena in reply to MiFerna

If you cant get an appointment with your dr and you feel the need to talk to someone try the BLF help line they are full of very knowledgeable people who are happy to help.

Damon1864
Damon1864Volunteer

Hello, I agree with everyone else talk to your GP and please remember you will have so much support from everyone here. Please keep posting and let us know how you are. Have a lovely day and remember you have no one down. Take care 😊 Bernadette xx xx 🌈

MiFerna
MiFerna in reply to Damon1864

Thank you Bernadette... it is great to have a forum like this where everybody can expose his fears and worries and get support and kind words.. Thank you.. xx Miguel

Damon1864
Damon1864Volunteer in reply to MiFerna

There is no need for thanks that's what we are here for, any time you need to chat just message me. Take care 🤗 Bernadette xxxxx

Slow right down MiFerna, mild emphysema, you have loads more living left to do, its good that it has been picked up in the mild stage as you can take the precautions to slow down its progress and even halt further lung damage if you are careful. When you speak to your GP ask for referral to pulmonary rehabilitation an educational and exercise programme on how you can manage symptoms and help protect your lungs further.

I've been diagnosed 16 years and I'm still going strong, you just need to as best you can avoid any bugs, colds flu, virus etc and do all you can to protect your lungs, ie no smoking passive or other wise, exercise regularly, eat healthily.

Relax a little you have a good many years left to enjoy life with your family.

Best wishes

Thank you Bkin .... it is going to be tricky to avoid bugs ..,My kids catch a cold or two ever year... 😷

Bkin
Bkin in reply to MiFerna

yes more difficult with children, but hopefully the blessing of this coronavirus will have taught children how bugs are spread, how some people are more vulnerable and that they need to wash their hands properly as soon as they come home after school or play.

My doctor told me when I was diagnosed that if I stop smoking and keep as active as possible, eat sensibly , avoid people with colds when possible I should live as long as anyone else.

Hi MiFerna, You have already been told the best course of action you should take so I will not repeat it. With having Emphysema myself, time for some home truths.

I was diagnosed as severe 4 yeas ago, my lung function then was 37% it is now 28%, so I have lost 9% in 4 years. In that 4 years I have also developed a load of nodules most only small one is very large and blocking a Bronchiole, feeding the top right lobe another in the top left lobe was a cancerous tumour, treated via radiotherapy and now is in remission, which has destroyed that part of my lung. I am now 70 years old. Until this Covid-19 lockdown and I started shielding, I was still working full time, on my feet all day. I still don't require supplementary oxygen.

A 9% loss over four years is a loss of 2.25% per year and that is with the blocking nodule and the cancer. As mild you probably have a function of 80%, less, call mine, 30% which equals 50%, that would take you over 22 years to get to my level. In reality a lot longer, remember a fair degree on my loss is not just down to Emphysema alone.

You have a long time to live yet, time to see both daughters get married and to see your grandchildren. You are extremely lucky to be diagnosed at the mild stage, you have time to change your lifestyle, stop smoking and that includes inhaling all types of smoke from burning things. In fact it is very likely you will die of old age, if you take good care of yourself.

I will probably still go on for at least another 10 years yet, by then I will be 80! Just to put things in perspective, I was also a heavy smoker right up until 4 years ago as well.

Rest easy, things are not anywhere near as bleak as you might think, honest. Live and enjoy your life, don't waste it away with worry, worry that will also affect your family as well.

MiFerna
MiFerna in reply to 2greys

This was very inspirational and brought tears to my eyes (and my wife’s)... Thank you..

catgirl1976
catgirl1976 in reply to 2greys

That's the thing with things like copd nowadays it can be controlled and its more likely you die with it than from it!

Everyone else has given you lots of good advice so I'll just say hello and welcome 😊

I remember when I was newly diagnosed with blood clots in my lungs and I was absolutely terrified due to the uncertainty of it all.

I’m 76, have severe Emphysema for 8/10 yrs, on nebuliser 4 times daily. You have years ahead of you to enjoy at your own pace, most definitely not the end of the world!

There is a lot of research now that states if you give up smoking your lungs should decline at the sane rate of a non smokers. Everyones lung function declines with age.

Hello again.. Following on this. Just finished a chat with my GP about the CT scan results. Divided feelings now...The dr was quite pleased that the scan was showing everything normal and in good shape. The fact that a mild emphysema was identified seems not to bother him much !! As all of you here mentioned, he reassured me that by stop smoking and having a healthy/ active life this will be managed and I shouldn't worry about it. Too early for meds and pr. He recommended a spirometry test ( NHS not possible at the moment because of Covid, so thinking of doing it privately). Another thing he mentioned was for me to try to manage my anxiety/ depression so I will also have a CBT consultation on Monday morning. What do you guys think?.. xx

This sounds really positive 😊 And anything that can help with anxiety and depression has to be a good thing. Wishing you all the best.

2greys
2greys in reply to MiFerna

It will take a little time to get over what has been rather a nasty shock. In 5/6 weeks time you will find your feet and have learnt a little more of how this disease is managed and have gained some confidence that you will be able to get through it all. There is a lot to learn but none of it is hard or beyond understanding. One rule though be careful with Dr. Google, there is a lot of bad or out of date information on the web, everything you need to know are within this forum, we all live with various lung diseases, or go to the BLF site itself.

Chriskho
Chriskho in reply to MiFerna

Great response by your doctor. I think when anyone hears the term emphysema they panic and think of the worse things as many people mostly ex miners died of it years ago. But this IS different as nowadays you get diagnosed whilst in the mild stage ( if you are very lucky) therefore know in time to stop smoking to halt it and keep it mild. Many people on here have stayed relatively mild throughout. So it’s a warning to stop smoking and look after your lungs now, Ask the GP to have a spirometry test annually by the surgery’s copd nurse to keep a check on it and give you confidence and reassurance . Keep well. Cx

Greetings

So -- you took the most important step and stopped smoking. Well done -- that's the biggest hurdle for most of us here, I suspect. I was only about 33 when I was diagnosed. That was 40 years ago.

You will find over the years that you walk more slowly, find some things make you puff and pant -- but we all grow old.

Medications these days are excellent. New treatments are being developed. If you're sensible and stay active, just look forward to walking your girls down the aisle, then playing with the grandkids.

Cheers

Catnip

MiFerna
MiFerna in reply to Catnip

Thank you Catnip...

I think when you initially get diagnosed with anything it can come as a big shock. I don’t think you have failed your family, these things can happen to any one of us. It will definitely be worth to talking to your GP about what help you can get and what you can be doing to stay well. I am sure some other members on here might be able to offer more advise aswell.

All good positive news ive been reading, i was diagnosed in 2011 with stage 1 mild bullous emphysema, top left /right lungs damaged. Stopped smoking, exercise all the time, eat a balance diet. Ive had a few hickups health wize over the years but no great change in my emphysema over the years, 52 in September and will hopefully live a long healthiest life.

MiFerna
MiFerna in reply to 1968

Thanks for your comment 1968. We should stay strong and healthy ! (although I am still very worried 2 days after diagnosis)

1968
1968 in reply to MiFerna

You will be, its only natural. I was the same, however i took it as a warning, if i didnt know i had it it would have been so much worse by now because i probably would have been still smoking & thats what would have progressed it.

This disease has give me the heads up on how i needed to change my ways, or else!!!!!

We all have crosses to carry & this is mine.

Education is key, yours sounds like mine early stage 1, you will most probably pass of old age before this gets you, sobering though.

Stay positive, its not a death sentence, stay focused on what you have to do, educate yourself & ask ask ask loads of questions on here, these great people are the experts.

👍👍👍👍👍

Welcome to the forum.😀😀 You will get plenty of help and support on here. With mild emphysema as long as you stay healthy, you will live for many more years to come. You have already done the hardest part, you've given up the cigarettes (unlike myself). I was scared like yourself when first diagnosed (moderate emphysema in May 2017), but coming on helped a lot. They are a good bunch on here.

Stay safe

Jan 😀😀😀

Hi. Can you tell me what your symptoms were that made you go to the Dr's in the first place? Thank you

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