Emphysema' is killing me and my mind' - Lung Conditions C...

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Emphysema' is killing me and my mind'

Kenny34 profile image
27 Replies

I found i had empysema' when i was in hospital over xmas and im so scared' im on a lot of meds and nebs i think its time to call it a day im 57 live on my own ans scared to go out my name is kenny' i dont have a life after empysema' i also take fits and shake realy bad thanks for reading this ' kenny-'

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Kenny34 profile image
Kenny34
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27 Replies
Swerv profile image
Swerv

Many people on here have emphysema, as i do. Whilst it is a progressive disease there are things you can do to improve your life. Regular exercise and healthy diet plus if you smoke STOP. I am fitter now than i was when first diagnosed 2 years ago this month. What is your FEV%?

iceoteck profile image
iceoteck in reply to Swerv

I quit smoking 5 months ago I had collapsed lungs Flattened Diaphragm Hypertension and some Emphysema not 100% I am going to my doctor tomorrow to have another x-ray

Also have Osteoarthritis of the spine 3 Fractures thoracic spine and 1 fracture lumbar spine and bones of an 80 year old that is it have a really excellent Doctor live in Australia am a Kiwi

Bella395 profile image
Bella395 in reply to iceoteck

Iceoteck - this thread is two years old. You would get more replies and help if you started a new one.

revagayle profile image
revagayle

Kenny, I too have recently been diagnosed with emphysema. It is terribly frightening. Just try to take a deep breath. This is a wonderful forum & you will find a lot of support here. You will not be alone. Take care, Gayle

y_not profile image
y_not

HI Kenny & welcome,

It does seem quite frightening at first, "this is it", "I'm gonna die" etc. Well, five years on (six years later this year) and I'm still here, still working even!

Yes, it does have some effects on life but with a bit of understanding (from Pulmonary rehab courses) a bit of planning (turn up late for a meeting and I'm gasping for breath - learnt to always be early) and a bit of good luck mean that instead of being defined by the disease I began to live with it.

Stop smoking, eat well, exercise plenty and it's unlikely to kill you - with no practice run at life we just have to play the hand we are dealt, enjoy life and learn to tolerate the awkward bits. Like you, I wish COPD was my only problem it's just part of a [long] list that make up the inconvenience!

Best wishes

Leener71 profile image
Leener71

Hello Kenny....you must be feeling really low and you need to talk to your doctor urgently. There are ways to treat your problems...not easy to find the right treatment but its there. Life is always worth living. Do you have family or friends to talk to? There is treatment for your fits too. Dont give up.... get up and fight....

Thinking of you

knitter profile image
knitter

Can you ring the BLF helpline today...that's if you live in the UK.....open during office hours on 03000 030 555. Or you can email them via the BLF website .

I would also ring your GP surgery today and explain how you feel, hopefully they can arrange some support.

Remember The Samaritans are always there too.

Caspiana profile image
Caspiana

Hello Kenny.

I remember feeling very much like you are feeling. Thinking I should just call it a day. But two years in and I'm still here. It is important to contact your doctor or the BLF helpline. There is help available. This is not the end.

Thinking of you.

Cas xx 🌷

Carnival567 profile image
Carnival567

It is always so frightening when something like this happens especially if you have no warning that there is a problem lurking, but there is help available. The BLF helpline is excellent, your GP can help with your anxiety and pulmonary rehabilitation classes mean you will have help and you will meet others in the same boat. Counselling will probably help too. Please don't despair, there are people here who care. xx

gingermusic profile image
gingermusic

Oh dear how can you believe your life is not worth living? With the right treatment and maybe a change to attitude on diet and exercise you could live for years yet. I was diagnosed when I was 40 years old and am still here "living a life" at 67 and I intend to be here for a good few more years yet. Take up any offer of help and if you get into a pulmonary class go and complete it as it really does help. You can and will be fine

andyrew profile image
andyrew

know how you feel i also live on my own was diagnosed about 10 years ago i found it very hard at first but you learn what you can and cant do dont be scared to go out just make sure you take your meds and always have your inhalers dont rush ,you must do things to suit yourself hope this helps

mmzetor profile image
mmzetor

it comes as a bit of a shock at first I was diagnosed 6 years ago with emphysema I'm now 41 , if you make the changes every one is saying and you get the right medication you can have a reasonable good quality of life some days aren't so good and my take you longer to do things but you do get there , maybe talk to you gp and you sound very depressed he maybe able to give you something to help you feel a bit more positive ,

tracyball1 profile image
tracyball1 in reply to mmzetor

Hi Kenny I'm the same as mmzetor I'm only 41 I've found walking has really improved my breathing, if ur still smoking please try and stop, and just try and go for a little walk every day then build it up to longer walks. You sound really down at the moment but you need to start looking after yourself and you should live for many more years to come xx

iceoteck profile image
iceoteck in reply to tracyball1

You guys are all amazing

Dedalus profile image
Dedalus

Hello and welcome Kenny - you're young and still have lots of life to live - once you get your head around having COPD you'll find that it is very manageable - just don't give up. The sun will shine again. All best wishes

Damon1864 profile image
Damon1864Volunteer

Hi Kenny,please don't let this illness rule your life, eat healthy and exercise bed you can. Worry over the different stages will only make things worse, there are lots of people on here who suffer the same as you and lead perfectly normal lives. And give up smoking if you haven't already done soon, and never research or google stuff,listen to your own body and people who know about this such as your GP. Please keep posting and have a positive attitude it works wonders. Take care 😊 Bernadette xxx

Dmactds profile image
Dmactds

4 years ago, I was pretty much in the same shape..., pretty bad off, Kenny. However, by putting my head down and barrelling through the pain, I've managed to develop some kind of tolerable life.

Pulmonary rehabilitation is a LARGE help if you wanna know the truth. Investigate that and attend some sessions and continue whether you want to or not. DO IT !!!

The thing about our, yours and my, disease is that it's too easy to "give up", "lay down" and let the worse happen. However, I find it more fun, interesting and "strengthening" to think of my malady as a demon that has to be fought and I do so with great gusto.

Pay attention to what you eat, take your meds including vitamins ( CoQ10 Mega is great stuff ), exercise by walking on your own and anything else you can think of to begin restoring that strength that Evil Emphysema has tried to rob from you and ABOVE ALL attend rehab sessions.

Let us know how you are....

Regards,

Duncan in the Colonies....

mikeadams51 profile image
mikeadams51

I was diagnosed back in 2007 with emphysema and still going. Struggling at times but my phylosophy is to always look on the bright side. Never give up hope. Find someone to discuss your fears with. This site is brilliant for that.

fastball profile image
fastball

Hi Kenny and welcome. WE are all pretty much in the same boat one way or another. I was diagnosed in 2008, when i was in hospital with a bad chest infection. I carried on just the same except for the fact that i was taking meds.I spent a fortnight in hospital last July and have been left with the weezes and a shortness of breath when i try to do something. But we dont give up we have family and friends that care about us. If you have no one then you can ring Salvation Army and they will talk as well visit.

Chris

mikefa profile image
mikefa

Sear Kenny,

I don,t know where to start but first I think you need someone to ventilate all of your negative feelings. Your still quite young to have COPD but many live 15 or more years after diagnosis.Your fits and shaking sound frightening,and going out a challenge.Did they check these out when you were in hospital. Did you have an EEG.

Your diagnosis sounds more complicated than just COPD I feel you should go back to your doctor and ask him what is the next step. Explain all your feelings about your complex situation and there may be a lot that can be done.Life is too short and valuable to give up.If you are able find from this site if there is a breathe easy group in you area. Even if you do not go to a meeting ask if they have members who would support you at home and or take you to a group meeting.

Let me or anyone in this site how you are and how your get on.

.I don,t believe there will be a member in this room who at some time hasn't felt despair when there illness takes a turn for the worst.If those thoughts get too strong ring the samaritans

Not like me I am lost for words but there is life after illness.

Take care and keep in touch

adanove1960 profile image
adanove1960

Do NOT give in just like that...I know many , many people living for years with Emphysema including my Dad....he lived unill 2006 and was 82....He used to take pheumonia about 4-6 times a year and always within an hour of being 100% well...life is too precious Kenny and you are still a young man at 57. You may live alone , you may take turns and have lung problems & seizures but people do care and your life is eqally as precious as every other person alive...Please perhaps consider improving your mental health ...maybe anti-depressants , getting out of the house...joining some community based groups...there are prob hundreds like you living in the area...do something positive each day...there is light at the end of that very dark tunnel....X

casper99 profile image
casper99

Hi Kenny, it's normal to feel scared when we are diagnosed with COPD. I felt exactly the same as you do but, with help from my Docter, counselling and this site, I am back to my old self.

Whatever your illness, anxiety makes you feel far worse than you are.

I found myself having much more breathlessness following my diagnosis, which made me think I was deteriorating rapidly, I had the shaking too but, it turned out it was sheer terror, causing panic attacks that was the culprit.

It was all triggered by the shock of having COPD.

It took anti anxiety/depression medication to stop it.

If you follow the excellent advice already given on here, starting with a visit to your Docter, you will soon see that things are not as bad as you think.

Depression is a terrible thing and can make life seem not worth living.

You've obviously been very poorly to be in hospital and it takes time to recover from it.

Things can get better, stick with us, keep us informed how your doing and you'll see. xx

Watfordgirl profile image
Watfordgirl

Hello Kenny and welcome, you've had some brilliant replies. I can't add to them except to say there is a much better life just a little way round the corner. Take as deep a breath as you can and see your doctor as a first step.

You're not on your own now. You have lots of new friends on here and we're all dealing with similar things. Keep in touch and take care, love Sue x

Roessner541 profile image
Roessner541

Kenny I am 62 had part of my lung removed because they thought I had cancer and didn't was in an induced coma because they sent me home with a horrible staff infection my quality of life has gotten bad compared to what it was but I get up every. Morning and pray I will get stronger and go to bed with same prayer I know there are others much worse off then I am I just take it a day at a time I am much better then I was I just have to make peace and what happens happens for a reason take care of yourself okay?

marlee profile image
marlee

please go back to your doctor .I know you are in a dark place right now but please be strong you have a lot more living to do yet and with help from doctor and rehab you will find you are enjoying living again..we have all been in that dark place but it really does get better once you are over the shock of your diagnosis..you will have down times but also lots of good times as well x

undine profile image
undine

Hi Kenny sorry you are feeling so bad and see lots of our lovely members have offered hope and advice but the one thing that strikes me about how you feel is how I felt when I first left hospital and was 'coming down' from the high doses of steroids that they had given me - the steroids really 'did my head in' so to speak and took me to dark places also physically gave me the shakes so if you are still on steroids that might be an explanation at least in part of how you are feeling -which if it is you can at least take some consolation in the fact that when they wear off you should feel a bit better both physically and mentally. I too live alone and was diagnosed when I was in my late 50's and have been on a roller coaster ever since but I am still here 4 years on so you can survive and you can take all the advice given and make the best of life that you can for yourself but I won't lie it is hard both physically and mentally but you will get good advice and support here so you are not completely alone - hope that helps - take care xx

iceoteck profile image
iceoteck

My heart goes out to you lot's of hugs thinking of you mate xxxx😘😘😘😘

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