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My spirometry test

121 Replies

Hi up until 20 minutes ago I thought I just had asthma my Dr just phoned to say I have asthma and moderate to severe copd I feel my life is over and cannot stop crying

I don't know what I am going to do just completely devastated.

I he said some of my results were good but have not got a clue what else he said.

Starting a new job in March.. all I can see is me on oxygen. Havibg to give up work and an early death. I can't stop crying

121 Replies
hypercat54 profile image
hypercat54

Hi welcome to the site. We all understand on here as well had to face our own diagnoses, but you will calm down when it sinks in.

The good news is that it has been caught fairly early, and whilst it is a progressive disease it doesn't usually progress quickly. Leading a healthy lifestyle and most of all not smoking can keep it stable for many years. For example I was diagnosed mild 10 years ago and am still mild. I never expect to reach the severe stages, and the doctor told me something else like old age will get me first! Most people these days die with it rather than from it.

Ask your doctor/nurse to refer you to PR (Pulmonary Rehabilitation) which is a 10-12 week course with an exercise expert and a respiratory nurse. Also have a look around the site as there is lots of info on here.

I knew nothing about copd when I joined here yonks ago but learnt a lot on here. We all help and support each other so any questions just ask. x

in reply to hypercat54

Hi Thank you for your response. I have consultants appointment 25th Febuary so will have to see what they say. I do get a bit out of breath nothing severe and not all the time.. I have not smoked since 1st December 2018. Just not sure what this means for my future. But thank you for responding.

in reply to hypercat54

I think it's my Dr saying moderate to severe I really don't know just devastated

hypercat54 profile image
hypercat54 in reply to

It's often so much what the disease is but how you feel with it. If all you are getting is a bit short of breath then that's good. Remember you are still the same person you were before your diagnosis. x

in reply to hypercat54

Thank you I am just scared for my future want to see daughter graduate university grand kids grown up...just scared right now.

hypercat54 profile image
hypercat54 in reply to

And there is no reason why you won't! Even those very severe and on oxygen can live for many years with some quality of life. Just look at some of the posts on here. x

in reply to hypercat54

Maybe later for now just I guess feeling sorry for myself..and scared

I stopped smoking 1st December 2018 as I have had asthma since 2011 i have an inhaler fostair and my ventolin I use my preventer as prescribed. I have had to use my ventolin three times so far this month.

I really thought if I had copd it would be mild..my husband said I am being negative so bit unsupportive as I am at this moment just scared

Spacecat1 profile image
Spacecat1 in reply to

Cold and damp dont help. Keep warm. You will probably be given a rescue pack. Its mainly antibiotics preslidone inhalers. Get the antibiotics going straight away.. to help you. Talk to people on this website they are full of help ideas and someone one to sound off to. You will settle and start to understand what has happened

in reply to Spacecat1

I hope so as for now just cannot stop crying what about my job? Will i be able to continue to work? When will the oxygen start I am absolutely petrified if honest

2greys profile image
2greys in reply to

Your new job and working? Although we are all different and I cannot promise the same, but, I am severe, borderline very severe. I still work full-time as a production engineer, on my feet all day and this week doing 12 hour days and will be 69 this year. So it is possible, the secret is to stay as active as you can and exercise, just as my consultant told me three almost years ago "The more you do the more you can do" and he was certainly right. I am also not using oxygen.

in reply to 2greys

Oh thank you so much for that because I know nothing I am assuming I won't be able to. Oh thank you so so much

in reply to Spacecat1

Thank you for your response I just hope I can continue to work and provide for my family

Strangely enough I don't crave smoking my head is completely spinning and can't actually stop crying how stupid is that

knitter profile image
knitter

I was told I had COPD at a routine asthma review years ago, and I remember walking out to the car park in a daze.

I am upset for you having to learn about your diagnosis over the phone, with no support and no one to answer your questions or worries.

I got most of my information from BLF leaflets and there is a helpline open during office hours on 03000 030 555. Can you contact them tomorrow?

Ask your GP about pulmonary rehab classes too.

Lots of people on this site have lived with COPD for years, as I have .

My cough has actually improved recently, so things can change .

A good diet, suitable exercise, relaxation, meditation all help.

Best wishes.

in reply to knitter

Thank you for understanding as I just need right now to express my emotions and got no one to express them to as my husband does not understand as I have asthma and deal with it...I have no cough no excess mucus just a bit breathless when talking. Yesterday my sats started at 83 then after few seconds went up to 95 but my pulse was very high..I am so fearful of my future...

I cannot tell you how much having people respond to my concerns have helped. Although I am still tearful I don't feel alone.

I will contact that number tomorrow. I will have to wait until until surgery gives me appointment to see nurse next week.

I would have preferred a face to face.

He said some of my results were good didn't know what he meant. He said asthma and COPD. When I asked at age he said moderate to severe but I was to wait until I see consultant in Febuary 25th as consultant may say different stsge.

I am confused scared.

Thank you for responding...how long have you had copd? What is pulmonary rehab classes? How do these classes help?

Shancock profile image
Shancock

Hi Emily,

When you see the consultant ask for a CT scan to be done asap so they can see if there is any lung damage. That's the real way to diagnose this and then a full lung function test. Sorry I'm not sure what test you did as the spirometry can vary, the ones in the dr surgery are pretty basic.

This might not be as bad as you think and in all honesty if it is COPD, if you take care of yourself there's no reason why you can't carry on with a long and happy life.

Always take your meds, keep warm, wash your hands like a nutter and don't let anyone with a cold come near you. Don't meet with a friend if they're snotty, even if they say it's nothing serious just don't take the risk. Trying to keep infections at bay are very important.

in reply to Shancock

Hi No I had test at hospital this was due december was admitted to hospital breathing difficulty to an x-ray that showed my lungs to be inflated. I thought this was due to my asthma not being under control. I had to blow into a tube with a peg on my nose. Then had salbutomal 4 puffs left for 15 minutes and retested again.

in reply to Shancock

Ps what's a full lung function test. And thank you again

Eddie1973 profile image
Eddie1973

Hi Emily, please try not to be too scared. I got diagnosed (mild) buried my head in the sand for 3 years - could tell my breathing was getting worse ( 20 a day smoker) I only acknowledged it properly when I gave up again in Oct 2018 - when I started to notice my disgusting habit might kill me! Since then every day things feel better and whilst you might be diagnosed as 'mild, moderate or severe' it really boils down to how you feel. This disease is very individual and I have learnt that on here, In fact because of this site I am about to go next week to question my gp surgery on anything and everything lol.

I think this site is truly inspirational, the things people post about what they have been through makes me feel very grateful that I have been diagnosed earlier than some. I know it's hard at the moment but when you are ready you will face it and fight at it, just as I am doing xx

in reply to Eddie1973

Thank you for your response

Spacecat1 profile image
Spacecat1

Speak to personel department explain what's going on I would have thought if it's not going to affect your work there shouldnt be any problems but they do need to know.

Speak to your consultant at the hospital they take you through everything. I am a shy nervous person hubby comes with me. But my consultant puts me at ease any questions ask they do understand. Talk to a family member or close friend let them know what's going on. Often having family and friends are a godsend. Keep up the good work with smoking. I was diagnosed inv2008. It does take time to sink in what the doctors have said. Take it day at a time. Any questions message me.hope you start to feel more settled soon xx

in reply to Spacecat1

Oh thank you so much all the responses are helping..I will as work know I have asthma. When first diagnosed with that it was hard this is a completely different ball game. All I though when my GP was talking to me was my life is over.

My son is coming with to see consultant and has told me to write down any questions.

Honesty don't know what to ask as up until going on this site thought that's it oxygen then death

Whitechinchilla profile image
Whitechinchilla

Welcome Emily61.

I wanted so much to reply but so much good advice has already been given, I don’t think I can add much of value.

Except to say...

Give yourself time to cry it out of your system.

Phone BLF asap and ask for their leaflets on COPD.

Keep posting so you get support from everyone here who totally understands how you feel. That will be the best thing you can ever do for yourself.

Finally, your journey is about “ baby steps.”

You can’t cure it but you can manage it.

Hold onto that.

Let us all know when you have some answers.

With very good wishes.

in reply to Whitechinchilla

Thank you...just wish I could stop crying

Oxygens profile image
Oxygens in reply to

How did you feel the day before the diagnosis call?

You can feel better than that tomorrow, if you want to, especially as you have stopped smoking.

in reply to Oxygens

Do you know before the call I felt bit anxious because I was bit breathless but before that I felt fine. Going to work. I have to be honest I have been tearful since my admission to hospital 1st December last year. And this has just knocked me back

Whitechinchilla profile image
Whitechinchilla

Let it out Emily61. Statistics show it is impossible to cry forever. 😊

Hopefully when you do hit the sack you will be so tired you will sleep like a log!!

This phrase has helped me over the years. Hold onto it.

THIS TOO SHALL PASS.

Sincere good wishes.

in reply to Whitechinchilla

Thank you

I trying to sleep but I can't I need to switch my mind off but I can't crying not helping my breathing and my fear will not subside

MSMichaela1966 profile image
MSMichaela1966

Emily I was diagnosed 19 years ago please don't give up hope just yet. You can get past the shock of being told this horrid news. Believe me there is light at the end of the tunnel. Xx

in reply to MSMichaela1966

Hi everyone has been fantastic really they have I just can't get pass the diagnosis. I need to work have no choice I keep telling myself I am the same person I was before knowing but I am so scared I am taking in parts of what is said then all my brain is saying is this is progressive you will end up on oxygen.

I am so so scared I can't switch off...I thank you and everyone so far I can't help how I feel right now...

Iluvk9s profile image
Iluvk9s in reply to

Hugs

Pjmf profile image
Pjmf

Hi Emily,

I have never smoked and was really shocked when I read in the copy of a letter from my consultant to my GP that I had bronchiectasis. They had forgotten to actually tell me so the first I knew about it was what google told me. I just thought I had asthma and couldn’tunderstand why I kept being ill with infections. But hey, once you get used to the idea, you start learning to live with it and I would say my condition has improved in many ways with all the lifestyle changes. Lots of exercise, rea lly healthy food, but also rest when you need to. Don’t despair. Btw, it took a long time for it to sink in with my husband too, but now he’s pretty understanding. He needs to learn about it and support you.

Good luck and try not to worry to keep stress levels down andimmune system up.

in reply to Pjmf

Thank you

Julie5810 profile image
Julie5810

Hi Emily

I know exactly how you feel. I got the same diagnosis a week before Christmas 2018. I was devasted and like you had exactly the same thoughts and feelings as you. But now with time,this group and waiting for my PR appointment I feel more positive. The main thing is to keep off the fags (although that's not easy I have fallen off the wagon) point being it does get better with time and make sure you talk to people about your diagnosis x

in reply to Julie5810

I just feel my life as I know it is over. I read all this encouraging words and must seem so ungrateful because everyone here is going through there own stuff and have taken the time to respond to me...I just don't know what now.

Iluvk9s profile image
Iluvk9s

Hi Emily. So sorry that you were diagnosed with copd. I am waiting on a spigometry and x-ray. The doc office is not getting in any hurry. I was diagnosed with sleep apnea in 2001 and was put on oxygen for hypoxemia at night. I smoked 1-2 packs year. I quit smoking Oct 12 2017. I understand why you are upset! Sending hugs.

in reply to Iluvk9s

Thank you

in reply to Iluvk9s

How are you doing sorry I have even asked how people are doing

Iluvk9s profile image
Iluvk9s in reply to

I am okay just scared. Hope you are not crying as much. I have a lot of health problems so I can relate to being afraid and having crying spells.

in reply to Iluvk9s

Crying then stop

Iluvk9s profile image
Iluvk9s in reply to

How are you doing?

in reply to Iluvk9s

I am trying to be as positive as I can i am trying to work out slowly still wake up a bit scared...for example I am so scared of ending back in hospital...not sure when you start rescue pack...had a good day yesterday then got cold air hit my through and full blown panic kicked in

Iluvk9s profile image
Iluvk9s in reply to

That's good you are trying to stay positive. I can understand your fear. I do not have trips to the hospital for COPD yet or rescue inhalers. Looks like I will be waiting at least another month for the test.

in reply to Iluvk9s

What test are you having

ScouseTaffy profile image
ScouseTaffy

Hi Emily, you've made a good step by joining this forum. The peeps here are full of knowledge, support, practical advice and generosity of spirit. I usually 'watch' and learn!

A good idea is to write down the questions you want to ask when you see the Consultant and tick off once answered.

Good vibes coming your way x

in reply to ScouseTaffy

Thank you

Hacienda profile image
Hacienda

Hi Emily, All these responses here are valuable to you, Read all the Positive's and you will rise above your Fear. I am on Oxygen , 3 years now, it does not stop me from what I want to do, I go to The Gym, Twice weekly Exercise Classes, Try my Best to eat Properly, my downfall is chocolate. You learn so much from all your new Friends on Here, We are one Big family, never hold Back, always ask for Advise. Stay Strong & Positive Hun. Love n Hugs xxxxxx

in reply to Hacienda

Hi Thank you i don't know what to ask really. I was giving the outcome over the phone. Well wanted to know results.

My concerns are

I still want to be able to work

I don't want to be reliant on oxygen

I don't know what I am saying I just see no future right now

Hacienda profile image
Hacienda in reply to

Everyone here has had Fears for their Lung Diseases which can be so Different with Different References to each. You sound as though you have an anxiety problem ? sorry if I'm wrong. I too had Anxiety( in a Dark Place) brought on by certain Meds. I & hubby went to my GP who helped me immensely. I know how to control my COPD, My Oxygen, My Meds, My Exercise Regime. My Daily Life. It doesn't happen overnight as for you there is a lot to take on Board, Honestly once the shock has passed,and you have spoken to Consultants and This Forum, thing will come together and you will see your condition more Clearly. I have been on the Transplant List for 3 years and not 1 call came my way. As I am getting older (67) BUT, fit, I have after many Discussions with Hubby & family am "Coming Off The List" in March. (No more waiting for the Phone to ring every Day & Night). I know I am well enough to Travel Abroad where my grown up Grandchildren Live, They always come to see me here in UK, Now after 6 years, I am Planning to Go to them, I am very Excited and will plan & Strive to Travel with comfort on Oxygen, wheel Chair and Positivity, I'm not Dead and I don't plan to allow COPD to put me in that frame of Mind. Please Emily, Live your Life happily with the Help of your Consultants, You have a Long Life with your Grandchildren. Sending Hugs. xxxxxx

in reply to Hacienda

Thank you so.much you are an strong person. I am beyond anxious. Thank you

claracola profile image
claracola

Hi Emily

Just wanted to say that 2017 my spirometry was mod to severe but this year it was mild so it can vary I think. Lots of good advice and encouragement here! Take care and go on as usual!

in reply to claracola

Can it sorry I can not think.strsight all very strong people here I am not as strong. I need to move from this bed and do something positive but can't

Ergendl profile image
Ergendl

Some great responses here, Emily. Welcome to the group and keep coming back. The suggestions made by others here helped me improve my lung function from 68% FEV1 to 82%.

in reply to Ergendl

Good morning I feel so ungrateful because everyone has been so encouraging but my fear will not subside. I am trying honest I am but the tears still falling and I am still so very scared not moved from my bed since my doctor phoned yesterday. Had study day today I cancelled. Got work tomorrow and don't want to go.

Sorry I know I sound stupid

robin3k profile image
robin3k

Hi Emily61. I was diagnosed over 20 years ago and worked until I was 60. I am 73 now and have only recently been put on oxygen at home ans when I go out. It took me a while to adjust when first told but I gave up smoking and I have come to terms with the problem and do things at my own pace so chin up and keep smiling

in reply to robin3k

I am just so scared I am worried for my future. My kids and my grand kids want to be around for them

robin3k profile image
robin3k in reply to

I felt the same but the support I got from the family helped me . After my wife passed away 9 years ago I had problems but again the family rallied round and helped I have 2 grown up daughters and 4 grand children and they are all a great help to me I have learned to live my life to my limitations and at my own pace and the family understand that. Hope this helps you

I know what you mean sure I am but how I feel right now sorry

Deedee111 profile image
Deedee111

sorry to hear that my darling am brittle asthmatic and u will take it day at a time everyone s different and I understand why ur so upset but everyone on here has been where u are now . I know its not easy I been ill all my life and have a subcutaneous infusion what am trying to say once u stop being so upset it will sink in and u will figure out what works for u sorry ur so sad but it does get better and u will have good days and bad days it does get better honest

in reply to Deedee111

You sound so strong I feel so stupid as I know what everyone is say is correct just scared sorry i know as someone said I am over reacting but I do not know what now. Sorry

Deedee111 profile image
Deedee111 in reply to

sorry for what don't u dare say sorry and I don't aggree that ur over reacting what a thing to say . Its all new to u so reacted how everyu want to. I am not strong mentally am having a good day, I get down and depressed and am not saying u wont feel these things but u will find what works for u and u will feel better in ur self ,here for u if need to chat any time

in reply to Deedee111

Oh thank you

stamford1234 profile image
stamford1234 in reply to Deedee111

Yes, don't let the dreaded depression creep in, I find exercise albeit gentle helps

in reply to stamford1234

I will try very hard not to

Proteusy profile image
Proteusy

Hi Emily, just wanted to send you a warm hug from Portugal. I'm 46 have 2 sons a wonderful wife and had bladder cancer and just when I thought I was out on the clear I was diagnosed with mild enfisema. I fell apart...

Have been having panic attacks and it has not been easy for me too, and every time I Google about cpod I get worse and get more anxious. This was 2 months ago. I would love to give you some advice but have none. But as you can see you are not alone.

Big hug,

Paulo.

in reply to Proteusy

Big hug back be strong

stamford1234 profile image
stamford1234 in reply to

Stay away from Dr Google! It's mostly outdated and misleading

Dilly2 profile image
Dilly2 in reply to Proteusy

Hi Proteus Do not Google it tells you a load of rubbish. When I was first diagnosed about 12 years ago I felt like my life was over after I googled and read I had less than 6 years left there is people on here that have had COPD for years this site is the best very positive.

in reply to Dilly2

Thank you I have.....having this support has helped

Proteusy profile image
Proteusy in reply to Dilly2

Thank you Dilly, you are right, dr.google sucks.

Today i had a spirometry and went to my pneumologyst. I dont need any meds at this point he said, just have a helthy lifestyle and practice sport. Not smoking anymore was my best choice.

A big hug to all.

Dilly2 profile image
Dilly2 in reply to Proteusy

Thank you Proteus good to hear your doing good. Well done for giving up the fags keep up the healthy lifestyle

Take care😄😎😄

in reply to Proteusy

I am so so glad you had such good news be positive look after yourself.

Kerouac profile image
Kerouac

You have voiced a lot of the feelings I have and the positive responses have helped me too. Hopefully your husband will become more sympathetic and helpful. My partner was great but he died recently and I feel very frightened in case I ever have to face a bad attack alone. But like others on here I try to lead an active healthy lifestyle and generally feel ok. I am sure I had copd long before it was diagnosed but put down my numerous chest infections to working with children. I am sure you will be able to continue working for many years...but retirement is great!

in reply to Kerouac

Sorry for you lose. I do feel so ungrateful and glad you all understand

in reply to Kerouac

Ps I think he is scared for me and just wants me to fight just don't feel you can fight this and win

MSMichaela1966 profile image
MSMichaela1966 in reply to

You can win. Never give up on your self. Xx

B0xermad profile image
B0xermad

Hi emily61,please don't despair it's a shock but there is light at the end of the tunnel and I imagine that all of us with copd etc ,felt the same on diagnosis and understand your feelings right now.4 yrs on I have been to pulmonary rehab continued with blf gym and am in a far better state of mind and body than before.its a coping with situation not a death sentence please stay positive and get all the information you need to allay your fears. I suffer with Bronchiectasis asthma and copd. Best of luck

in reply to B0xermad

I am just not coping bit breathless past 3 days. I can't see a future. Up until yesterday been doing my lung excercise taking inhaler trying healthy eating now just feel helpless

B0xermad profile image
B0xermad in reply to

Hi emily61,one day at a time don't be so hard on your self, there's no reason you cannot start your new job if it doesn't mean doing too physical or marathon races .and your consultant at respiratory and the physio in pulmonary can give you all the help and information you need.

in reply to B0xermad

There is elements of physical people moving work in a care home but hoping I will be ok. Guess because I have not seen anyone I don't know what help I need how bad I am...

stamford1234 profile image
stamford1234

So sorry to hear your news, you sound very shocked and confused. Your life isn't over, it's just going to be different. You will cope day to day just take it easy and take care of your diet and stay away from coughs and colds. Lots of help and support here. Good luck in your new job

in reply to stamford1234

Thank you

Whitechinchilla profile image
Whitechinchilla

Good morning Emily61.

I wanted to post to ask how you were feeling today and if you got some sleep?

Then I saw 70 replies to your post. Wow. I have never seen so many.🙂

That is so encouraging. See how many folk here care already?

Have a better day today.

Good wishes.

in reply to Whitechinchilla

I am really grateful for support I am and although I am scared I don't feel alone

Patchpoppy2 profile image
Patchpoppy2

HiEmily61. I have had asthma since birth and also have bronchiectasis. As long as you manage it yourself, you are in control..not it. I have epilepsy too so had to give up work but would still be working if not. Winter is worth time. Have some rescue steroids and antibiotics in, and at the 1st sign if a change, start them. Life does go on, you need to be in control. I hope you manage.

MSMichaela1966 profile image
MSMichaela1966

Emily I just wanted to add a little bit of light and tell you I still work 6 sometimes 7 days a week. Travel long haul for work enjoy hoildays abroad and going to have lung surgery this year 🤗 this horrid feeling will pass soon once you get your head around the fact you have a condition you have no control over. If you ever need a voice at the end of the phone I'd be happy to give you my number.

Chin up💪

in reply to MSMichaela1966

That would be great to actual speak to some one so yes please

esmarelda profile image
esmarelda

Hi Emily, I too was diagnosed last June. It was a shock and they tried me on all sorts of inhalers. I have asthma and had just put my breathlessness down to that. The last spirometry test, I was 33, not great. They sent me for a CT scan I am waiting for the results. My oxygen in my blood went from 98 to 91 then down to 87 before Christmas. When I saw the specialist mid December they put me on a stronger dose of Fostair 200/6 instead of 100/6 I also take spiriva. I was very low, thought my normal life was over. I couldn't walk more than a few yards without resting, taking a shower and hanging out clothes left me panting.

However since just after Christmas I started to feel much better. I have no breathlessness , no coughing and I can walk for over an hour without having to sit down. I had lost a stone but have my appetite back and have unfortunately put it back on again. I don't know if it is the stronger dose of fostair or if I had some sort of virus that made me so ill. I check my oxygen level in my blood daily and it is around 96/7 again. I feel I have got my life back. I am 67 in March and like you had all the fears that you described. Please try and look on the bright side I know it is not easy. It may take time to find the correct medication, it helps if you try and keep weight off ( I failed at this). I also found it helped to eat little and often rather than larger meals. Eating a large meal takes all the oxygen to your digestive system and I would regularly fall asleep within 20 minutes.

The group here are fantastic and really helped me to stay positive. I even bought my Christmas cards from the BLF, they were lovely. Check the strength of your fostair and ask about spiriva. Get a CT scan and keep off the fags.

in reply to esmarelda

I thank you for that have noted down name of medication..managed to get appointment for 3.05 today as broke down when I went for flu jab...so I will ask today about medication also going to ask about pulmonary clinic. Will feed back

Sharaybia profile image
Sharaybia

Don't let it discourge you because its certain things that doctors can do get your health in shape. I been in conditions where my asthma got bad that i was on ventilation which was breathing for me but he said it's going happen again but won't be bad as it was last time. First time it happen i passed out 2nd time they were doing cpr in ambulance took them 10 mins get me back and I thank God I'm still here thats faith. Give it to GOd there nothing better he can't do. His says "God gives his toughest battles to his strongest warriors

in reply to Sharaybia

Thank you

Sharaybia profile image
Sharaybia in reply to

You're welcome

Superzob profile image
Superzob

Hi Emily

I had exactly the same diagnosis 2 years ago, though I had never smoked, so that was all the more surprising - until, that is, I realised that these figures are based on averages, so big lungs and low exhalation rates can give you a poor result. Remarkably, my lung function has improved from 50 to 63% in two years with medication, which is more than I would have expected if it were just an improvement in the asthma component. I do still get a lot of mucous, but symptoms seem to vary between people with the same condition. So the diagnosis might be helpful in terms of getting the treatment right, but tells you nothing about the extent of your symptoms or your progress. As another poster has implied, there's no point worrying about what MIGHT happen, as there are no certainties with this condition any more than with life itself; besides which, it will only make you feel worse, when you didn't feel that bad before the diagnosis! And it's how you feel which is really important and getting the right treatment to keep you feeling OK.

Keep your spirits up.

Trevor

in reply to Superzob

You are absolutely right I know you are and my daughter who is here with.me now pointed out I could die tomorrow or going to the drs...just a real shock.and knowing nothing about COPD and how it will affect me as an individual is why I am struggling with it

Thank God for you all and this website

Superzob profile image
Superzob in reply to

You'll certainly get over the initial shock and realise you're the same person you were before the diagnosis. Only now, with the appropriate medical intervention, you will have a better quality of life (and, probably, a longer one) than you would have had if it had not been diagnosed.

ceris profile image
ceris

Hi, I was diagnosed in November 2018, I wasn’t surprised as I’d been a smoker for 50 years, but still felt very upset, the only time I cried was when I told my son, in my mind I had myself on oxygen and thought I wouldn’t be able to look after my grandchildren but I’m not on oxygen and I can look after my grandchildren, What I find difficult is the breathing so spoke to the dr recently and he’s referred me to a pulmonary class apparently they are very good, I am trying to be positive but my husband is very negative which isn’t helping, this site is so good so keep reading it will help.

in reply to ceris

Oh please be positive you and everyone here has enabled me to come back to the drs please...my husband appeared not to care and told me to stop being so negative which tore at my heart but. I felt so alone. I too broke my heart when I told my children...my son coming with me to first consultant appointment..and I feel you are all with me whilst I am sat in the waiting room

Ern007 profile image
Ern007

Hi, Welcome. Moderate to severe? Make sure you seep warm, active and above all don't smoke or be near anyone who does. Not sure what moderate to severe means, by that I mean you are one or the other. You say you are "starting a new job in March" well that's good news as severe COPD would often prevent that.

Keep calm and see what other test when you are not in a flare up show, I have had many bad episodes but am only moderate COPD..

COPD is progressive but can be slowed down by lifestyle changes mentioned above, keeping up with inhaler regime and you probably will go stable... All the best Ern..

in reply to Ern007

Yes that what my Dr said which spiral.me out of control.as if I am severe what's left...my daughter actually said the same as you...Guess I will be clearer once I see consultant in Febuary.

Dr was a bit annoyed I came to see him today...he started my saying.he had already told me outcome

Told him.thats fine but wanted a rescue pack...add on inhaler as recommended by BLS nurse. Got what I went for...

Ern007 profile image
Ern007 in reply to

A consultant can do a lot more than spirometry test. They can and do fluctuate. For a start he can order a 'pulmonary function test' - it's a long time since I had one but from memory I went into a cockpit at 80 degree F. Then you are given a number of tests in this controlled environment . The only hard was was the last one best describes and no air but you still had to try and breath. It was like breathing with a hand over mouth,, Don't worry it's just for seconds and you may not even get one.. My point being a chest specialist are able to better diagnose what stage COPD than a GP can..

Jason09876 profile image
Jason09876

Keep positive you're getting awful lot of support here good luck to you

I was quite upset by the call would have preferred face to face. He was not very supportive when I actually managed to convince receptionist to squeeze me in

I have been feeling much better mood wise until I went out for a meal with my daughter and struggled to eat as found it a bit difficult to breath

Ergendl profile image
Ergendl

Hi, Emily. I'm pretty sure a Pulmonary Rehab course would be very helpful for you, as it would teach you about your condition and help you cope with breathlessness and increasing exercise. Do insist you are referred to attend a course.

in reply to Ergendl

Hi just seen this got my first appointment with pulmonary rehabilitation on the 12th

Ergendl profile image
Ergendl in reply to

Great. Go and try your best, but don't push yourself too far, and it will work wonders for you, I'm sure.

Will have to ask consultant...on a low today

Itsmeok profile image
Itsmeok

You poor thing, you have taken this really badly, really sorry to hear that.

I got diagnosed just before Christmas, but no one as really told me a lot about it! But you will find most ppl say if you look after yourself it probably won't be as bad as you think, but then again am still just learning about it myself.

Don't really know what more to say, just take care.

in reply to Itsmeok

This I feel is the worst part not knowing and googling and that did not help...I am a learning disabilites nurse currently working in a very large elderly care home which before my diagnosis I felt was to fast pace for me so I am still there but go back to small learning disabilities service very slow pace nursing home 11 March.

How are you coping

Itsmeok profile image
Itsmeok

I work in a special needs School in Leeds, dealing with learning difficulties, bad behaviour, and students with medical needs. I didn’t know how far it was, as no one has really told me, it was the same for me as yourself! I just had the Doctors phone call telling me, I only knew what I had read on the internet, I am only mad at myself for getting it, as it is me who decided to smoke when I was young! Stupid ‘yes’ but, that’s life! Stopped smoking now, bit late I know! But at least I did it myself this time, I got an appointment at the doctors not a few weeks ago as I were having pains in my chest,

'long story short' told her no one had told me anything, so she told me something about it, told her I felt over the last three months it had got worse, so now I have had X-ray and am due ecg and blood tests, then another spyrom, then go from there.

You should make an appointment and tell them strait to tell you the score, because they don't seem to tell you anything at first!

don't feel so bad, just get out of breath easy, just come off of antibiotics and steroids, don't know it they did anything, don't feel any better lol

Just make sure you keep yourself wrapped up in this weather, and if you feel at all unwell, get right off to the Doc's.

So you just look after yourself

Are you still.working LD nurse so that's my field ...that's my main concern...got consultant 25th Febuary so hopefully all will be explained.....until then just got to pray it can be slowed down

Itsmeok profile image
Itsmeok

yes i am still working, don't think i have it as much as you, still getting around ok, just get out of breath if walking and talking, and if i do things too fast lol going up stairs and down, but make it ok though, going to see if i can get on the rehabilitation course, and see how i go from there.

in reply to Itsmeok

Hi I am still working well up until Monday...but that I explained on a previous feed...I get breathless when talking I am staring the pulmonary rehabilitation 12th. Start a new job 11th March...because I know nothing just asked because I wanted to know how people work and cope with copd. But I had it before I was told and worked

Its just the shock and not knowing what next. I get out of breath sometimes when I walk up the stairs

Can I just ask how long have you had copd if you don't mind me asking

Itsmeok profile image
Itsmeok

i think its been coming on for a few years now, but as they state! they can not diagnose it early enough, doctor told me October.

with it been a School job, i don't find it really hard as i'm in lessons mostly

so don't do much moving about, also my bosses are pretty good and try to help, i just take it steady and don't do any running about, just take it steady.

i'm like you, i don't know whats going to happen to me, hear different things, so in the dark a bit myself, don't really know if i want to know lol, i did think i'd have been more worried than i am, but not really, and dont no why!!!

in reply to Itsmeok

That's good I think no one knows anything for certain...strange as upon till the diagnosis was walking all around rome October did dementia walk with grand kids daughter not once breathless...then bit breathless 30 November 1st December last year unable to breath ambulance hospital in for couple days failed discharge back in ..accurate bronchitis...took better part of December to recover...then hospital suggested spirometry test...results sent to GP next thing Dr telling over the phone "Yes you have asthma and moderate copd" first part I knew the second part absolutely rocked my world.

There are times I don't want to know but then I want to be treated correctly so I can hopefully slow it down and live a productive life...

Itsmeok profile image
Itsmeok

i have just been through more test's as i am betting breathless and pains in my lungs, my self i think it's probably normal, but test's anyway, i am going to ask the Doctor for the Rehabilitation as i think it would help me, as still not sure what's going on.

by the sounds of it on here, listening to ppl, i think we will be OK Emily, so let's just see.

have a lovely weekend, and look after yourself :>)

in reply to Itsmeok

Going for my rehabilitation class 12th hope for some positive results from that......see what consultant says Febuary 25th .....let me know how you get on

Itsmeok profile image
Itsmeok

well hope it all goes ok on the 12th

let me know what it's like!

hope to get on one myself asap

take care

David

in reply to Itsmeok

It's all the unknown but so is life I guess

in reply to Itsmeok

Good evening you were on my mind how are you

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