Trying my hardest to understand my disease and just read on line if you have both it hassen the progression...I really am not helping myself..does anyone know if this is true. Now completely given up
Asthma copd : Trying my hardest to... - British Lung Foun...
Where did you read that Emily. I don't have COPD, but do have Bronchiectasis and Asthma and I've never heard any of the members on here that have COPD and Asthma say that having the two together will hasten its progression. blf.org.uk/support-for-you/... will take you to a page about COPD. You can also call the BLF helpline on 03000 030 555 (closed for training on 13 February 2019. Will be back up and running on 14 February 2019 at 9am) available Monday to Friday, 9am - 5pm. To speak to experienced nurses about your condition and ask questions.
I put in search engine and it came up
Don't google indiscrimanantly as this will increase your fears. If you must then google only recognised sites like the NHS.
It seems you would rather believe the rubbish you read on the net than what we tell you - us who live with the disease and who do know. I have run out of ideas with you I must admit. If you are giving up and going to live the rest of your life in misery then you might as well as pick your gravestone now. It would be a shame as you will miss some good and interesting times...
Harsh maybe but the truth. Tough love. x
I do wish you would stop messing about searching, Emily, you are doing yourself more harm than the complaint that you have. I have had asthma, catarrh and other old fashioned named things wrong with my chest, most of which they now call COPD, for years. All were neglected for many many years and did gradually get worse. When they were given their new names and I got the medication I'm on now the progression has stopped. Now I'm 88 this year, so compare that with your situation and stop worrying. 👍😉
Hi Emily you are doing just what I did 12 months back obsessing for answers looking up where ever I could after 4 calls to the nurses at BLF a lovely nurse told me to stop she also said keep off this forum for a while and just deal with managing your symptoms you have today I took her advise and today I have virtually no symptoms take nac am and pm eat well also vitamin D daily go to spinning twice a week .Keep well away from any type of smoke walk everywhere I can try to avoid traffic build ups and to be honest I have never felt so fit for years I am 72 take care all xxx
Hi and this advise I will take
Hi christina 1947. Good advice to Emily. You gave me good advice when I joined this forum too. I'll always remember you. Haven't seen your posts for a while xx take care M x hope your still really well
Sorry to hear about your husband and glad he's over the worst of it now. I can imagine what a hard time u both went through. Nows the time to recover and enjoy your time. Glad to hear you have no more symptoms and just wanted to know all was ok after not hearing it seeing a post in a long time. Take care of you both and thank you for replying. You were so kind to me when I joined back in February. You dont forget these things. Live and best wishes to u both xxM
Hi, I have COPD (emphysema) , bronchiacstasis, and several other quite serious things, and yes, I do get frustrated, yes I do get fed up with it all, the endless rounds of docs and hospitals, the numerous tablets and inhalers taken every day, BUT , I do try to keep positive and live my life as fully as I can. The only advice I can give you is to just pick yourself up and get on with it, a bit harsh but it works for me most of the time. Look for the small pleasures, a pretty flower, cheery birdsong, a child’s smile, a good laugh at a daft joke and you’ll be surprised how much it can lift your mood. I wish you all the best and hope you can find something to smile anout😁 love 💖 and hugs. Christine. XXX
Poorly controlled asthma can lead to copd and yes the more conditions you have the more challenges you will likely have. But Emily it is not a death sentence, follow the advice of healthcare professionals, take advice off all the lovely people on here who face enormous challenges on a daily basis, take care of yourself the best you can. You can live well and stay stable for a long time with your condition. That being said I understand how scary it is not being able to breathe properly it can be terrifying but your anxiety is not helping you.
You can do this, by the sounds of it your doing everything you can to take care of yourself X
Hi Emily really good advice that everyone has given you. My doctor told me to only google NHS and Patient.co.uk. The British Lung foundation has lots of information on COPD too, have a look. I told someone once that I had COPD and they said “poor bugger” to which I was a bit shocked that they should say that but took it as they are ignorant and don’t know anything about the desease. I look at some cancer patients who have survived and go on to live many years as an inspiration, if they can carry on without moaning then what have I to moan about. I actually have one friend who has beaten it twice and is so positive. Emily no one is saying you arn’t ill just not to panick and let your thoughts get the better of you. I am further on than yourself I have know for over a year. It is a shock at first but you will accept it and carry on and you will have ups and downs especially in the cold weather. Don’t despair but you need to calm down otherwise you will make yourself ill. Love and best wishes xxx
Hello, I agree with all the answers in this tropic. Don't let fear take over your life honey....it will do you no good at all and it's not healthy at all.
Speak to your GP and also ask if there is group that you can go, speak with other people who have the same problem can help a lot to and it also helps with more socialising it can boost your confidence and help you to cope better to think a bit more positive, you just have one live try to enjoy it a bit, appreciate the little things in your life. Do some nice things, spoil yourself a bit, it will help believe me. I have been in such kind of black hole ... sure you will find some answers on the web but the web is not the way to live your life honey, I was at war with my fear because I found so many things online. Till my doctor told me, fear can make a lot things worse, that I should socialising more. I went to group meeting and they help me a lot.... because it showed me that I am not alone....and you not alone either. And we all tell you the same.... what do you think?
We love you all 😘🌹🌹🤗😋
Emily, maybe that's right, maybe it isnt. No way of knowing as we're all different. BUT I have both asthma and copd and was diagnosed at moderate and 19 years later Im still here and going strong. Please try to follow the advice here. As above, fear really can makes things worse so please try to get beyond that. Think of your PR course which you enjoyed so much - there's another one soon
I am just tired and looked at my kids and they still need me.. my eldest said she needs her mom...unselfish ways as a mom I have let my kids down
I have and what is the real world a condition that will get worse I get that and that to me is the real world ...had a 2 day blip....my fears are real to me ...I am sorry you feel I am not in the real world
I know you are right but my fear has over took me...don't know why as I was doing well..Will not be coming on here for a while
Well that's a shame because most people like myself are convinced that because you were doing so well before you could do that again. If you could only concentrate on things other than your condition, and we do talk about lots of things other than our ailments on here (me in particular🙄) it might have helped. But whatever you decide I wish you all the very best and as I said before, I'm convinced that this bad period in you life will end enabling you to enjoy a long happy life with your children.
Hopefully it’s not a load of rubbish and you will remain stable. I suppose the truth is somewhere in between because as we get older our bodies do begin to wear out so to speak.
Finding out about your condition and learning how to keep yourself as well as possible is very helpful. The Internet can empower us. As a carer, I have reason to be glad that I have researched treatments because the outcome has been very helpful. However, I have a medical background which helps me to discern what might be useful and what is not.
Hi I thought I would come on this morning as going pulmonary rehabilitation today. And just want to say here lies my confusion..I was told by my pulmonary rehabilitation nurse it's nothing to worry about??? Guess not here lungs The BLS nurse said stick to quick smoking and excercise avoid sick people. Don't know how I do that as I don't live in a bubble. Have flu jab and now..I will be just like normal people who have lung capacity loss as part of aging process....i didn't see the person with asthma who was told it's not copd..but hopefully they have accepted their diagnoses and working with their Dr to keep it in check.
You may want to discuss this with your Dr consultant to give you peace of mind. As for me I will continue with PR continue speaking to nurse again as she said someghing that confused me and on 25th, next week Monday have a discussion with my consultant and discuss my fears and concerns with him. I will let you know what he says if you like. Going to try and get few hours sleep now.
I am glad some one understands..I felt better having spoken to the two nurses. Then I research and nothing makes sense..how are you feeling..I am staying off here for a while was going to post off to rehab today then started reading responses and yours in particular and I see I am not on my own..
What stsge are you when did your consultant say it's been caught in time..what exactly did he say.. if you don't mind me asking
Did you get this 79% before or after inhaler as mine 77% after inhaler..how do you feel within your self..
Oh mine was 62% then 77% after inhaler non of that I understand. Have you got a respiratory nurse you can talk to..and I get breathless sometimes doing nothing..and yes it is conflicting. When was you diagnosed..I got my over the phone diagnosis a matter of weeks ago. I have sent you a message have you read it
Stay off the net and here for a while
I will be going to PR and trying to get some answers today not sure what topic will be..just came on today to see if anyone else felt like me and I see roey123 does. I have had some good advice on here but I do need perhaps to stay away until I have seen my consultant as still a lot that I find conflicting which is not helping my mental well being..I know I am struggling with the diagnosis still..what I don't need is people telling me to get into the real world as I don't know what the real world is.my world has been turned upside down.
I am sorry for your loss
Please give yourself time to come to terms with your situation. As you say, hopefully your doctors and respiratory team will be able to give you the correct treatment and to help you to cope with your illness. Make a few written notes (not too many) so that you have a reference. Take someone with you who is able to listen carefully then you can discuss things afterwards. There is a lot you can do to improve matters but it takes time to learn. Concentrate on the practical things that you can control such as taking your medication correctly, preventing infection, exercise, pacing yourself. It sounds like you are not in a good place right now but hopefully things will get better in the long term.
Oh Dear Me Emily, So hard for you Hun, Especially with our Comments back to you. Don is so Right as are the Others on this Post. You have already talked to your Rehab Nurses, I thought you had Digested what they said to you Obviously Not. Go to your GP and Tell them you need Anxiety Treatment, You will never overcome this "Fear" without Professional Help. The Best of Luck in your Future Hun, We are here to help and Advise as We ALL have done. Sending Warm Wishes to you. XXX
I had digested what she said but explain to me if I will as long as I do all she says age like normal people now. Why are they people at severe if they age like normal people. Please explain that..I only came on today because I have PR and was going to say I was going
The harsh comments well I will respond to..then will stay away until consultant appointment 25th
We all age at different levels Emily, some of us are determined to have a long happy COPD Life, it is all Down to accepting a condition that we know doesn't "Go Away", I was Diagnosed quite late with Severe Emphysema Stage 4, I went on the Transplant List. I said to myself "This is not going to "Control" Me, I shall "Control" it, which I have done so far. I listen to everyone on this Forum from 2017 when I Joined, Their help has Uplifted me and of Course My Professional NHS Staff, I am a very positive person with everything in Life. Best Wishes Emily. By the way I am now 67 and feel like the age of my Hubby who is 50, He is also My Carer and Goes to work. For me right now, Life is Good. xxx
I am trying to accept it but it has only been weeks not months that j had my diagnosis..and I apologise if I am finding it difficult..being breathless scared me..so it is progressive. Some one said they got the right treatment and the progression has stopped..how if you are at severe..sorry nothing makes sense to me. Why hasn't yours stop..it's not about living well with COPD and for me asthma..it's about question can it be slowed down yes it can I believe that..can it be stopped as Some one suggested..how if it's progressive that makes no sense to me. Maybe I am not explaining myself too well. I am only responding to you because I respect you. But explain if it can be slowed down ..how are you severe you are not old so I don't understand
Thank you for being who you are. And please understand my confusion and fear
Emily, It is a Progressive Disease, No it can't be "Stopped" I have had mine for many many Years,about 9 years , but was Diagnosed late (my own fault) in 2013. I stopped Smoking immediately, the damage had been done, although mine is Hereditery also. (passed on through family genes). I go out and I always look well with make up on and no one see's the Invisable Disability , Unless I have my Oxygen on ( Not always on) or on my Mobility Scooter, though I am walking a lot more now. Thanks to the 4 valves I had Inserted into my Right Lung, No I'm not going into that explanation, too long. Fight it Emily, we all have too. Best Wishes Hun XXXX
So when the nurse said my lung will now deteriorate like any one else she was incorrect and here lies my confusion
I will after the 25th hopefully return to the forum...take care and God bless xxx
I can only speak for myself. I'm at severe because my COPD wasn't diagnosed until I was at the severe stage. Had I been diagnosed earlier instead of just continuing to be treated for asthma, I'd have been getting the appropriate treatment earlier and might never have reached the severe stage. I suspect I didn't get the copd diagnosis earlier because I've never smoked.
Anyway, that diagnosis was 11 years ago now, and I'm still here, and in better condition than I was then. Obviously some of the damage to my lungs cannot be repaired, so I'm still classed as severe, but with exercise and a reasonably healthy diet I can do anything I want to without getting breathless - fortunately I've never wanted to run marathons, though there are members here who do!
I find the more I do, the more I can do comfortably and obviously the reverse applies. If I don't get out and about for a while, I start to feel unwell and lethargic again. Please stop worrying about the labels and the future. You've given up smoking, so there is no reason why your condition should get any worse, especially if you exercise. Good luck with the PR. It's a great place to start.
Thank you for that the avoiding people with colds and flu not always possible as work in care sector but I still don't get how early diagnosis makes any difference to a progressive disease
Hi what is the appropriate treatment as my treatment has not changed
Hacienda makes a lot of sense. You do need to deal with your anxiety. It doesn't help your breathing, not one bit.
Progression is a very individual thing. That's why some people are severe. I have a friend who has about the same lung function numbers as I do, in fact we both have Bronchiolitis Obliterans. She however, is on oxygen 24/7. I am not. I only need it when ambulatory. And there are so many kinds of lung diseases, not just COPD. All of them have different symptoms and traits, but have a different impact on their victims. Many people stay mild (I see your lung function after inhalers is 77%) and that is truly a number many of us on here can only wish for. Even if I get my lung transplant tomorrow, I am not very confident I will ever have a lung function in the 70s. Honestly, I am happy for you that you caught this early and are taking the necessary steps to keep stable.
We all do not know what life has in store for us, none of us have a crystal ball. However, we do know after being sick for a long time that attitude is quite important. Not just for ourselves but for those around us. I think we try to find the joy in every day. Joy doesn't look for us.
I honestly don't think people are being intentionally harsh. I think it is a mixture of knowing that believing too much in negative thoughts (over searching Dr. Google especially) is what sinks people very, very quickly and a tiny bit of frustration. Particularly because to a certain extent we have all been there and done that. I have browsed your 37 posts and I think people have been tried hard to be uplifting, encouraging and helpful.
Never ever underestimate your resilience. Because if you do, you will give up. And this disease does not allow for that.
I hope your appointment goes well and you get more answers. Take care Hidden . 👋
Thank You my Dear Buddy, You have worded this so well. It is all to do with our Mentality and sheer Determination to Live better. I do hope you Hear soon about your forthcoming Transplant. I feel my valves have come back to Life and are Helping me to Breathe Better. Had a Great Exercise Class yesterday, as we all did there. Today, I have a Breathe Easy Meeting, Planning our Future "Table Top" sales for BLF. Sending you all my Love and Big Hugs my Darling Cas. XXXXX
Hey there my buddy!! 😊
I wrote a really long reply and it got lost!! 😯 Anyway, I am not so 🔥good at the moment. I have random fevers and my shortness of breath is pretty bad. HOWEVER, I did have a good few "bouncy" energetic days last week, so I am very pleased with that.
I am really pleased your valves (auto correct insisted I meant calves!!!😱) are waking up. It must be springtime!! You keep doing what you are doing dear Carolina, you are doing so well.
Sending hugs and love 💘. xx 😘
Hi My Dear Friend, I did read your post here as I was Leaving for my Meeting, Now I have time to sit and reply. So Sorry to hear you have not been very Well, is it your Temperature going up & down ?, or your BP? My BP for 2 whole weeks was very low 101/ 64 at it's lowest, but as I felt ok, I waited and Today it is back to Normal. I think you have overdone the fact of a few Bouncy days, leaving you Breathless and with Fevers. take everything slowly Like a Snail, Stop & breathe, You know all this but it's nice to be reminded. Yes my Friend, the Valves are holding their own at the Moment, I too have to do everything slowly, though I am walking more & more when we go Shopping etc.
I am still a little overwrought regarding our Beloved Anne and Her Munchkins.
I also lost another Dear Friend and Colleague on the same day as Anne. Margaret had been our Secretary in our Breathe Easy Group, she had been poorly, but I know she gave up wanting to Live. So sad.
Well That's enough sadness, We must carry on and be strong and Positive as Always my Buddy. Always thinking of you. Sending Big Hugs, Love and Kisses, Cuddles for Chom. XXXXX
You are right Carolina. My bouncy days were good so I bounced a bit too much! 😑 My blood pressure has been good. I have no idea why I get the temps and neither do my doctors, but they are not extremely high, just high enough that I notice and feel tired. Maybe my body's way of making me slow down 🐌.
I'm sorry about your friend. I think there comes a time when we know we must continue to that next leg of our journey. I hope she is at peace. Don't be sad my dear Carolina. We are doing okay! xx 💕💜💙💚💛💕
J have appreciated the support I have had and I was expressing my feelings and yes I felt attacked my perception..I just don't understand..you all understand 77% fv1 or what ever it is means nothing to me...not yet had it explained. Still early days for me I am newly diagnosed and I am not the only one who feels this way
Anyway thank you and may be when I gain a better understanding and not read conflicting views I will not be so overwhelmed...
Again I would like to thank you. Wasn't going to respond but decided to...as you have supported me
What do you mean caught this early I am not mild I am moderate don't understand what difference it makes when diagnosed could you explain that to me...what am I missing don't actually get what is being said to me ...this is not anxiety this is confusion...I will be back after my consultant appointment 25th Febuary. As I feel my limited understanding is frustrating you all so thank you for all the support again received but I will be staying off here for a while as I need to figure this out in my head
Bye for now
hi Emily61 trust me when I tell you I understand I was told I had a trace of emph. in dec. and I still don't know any thing and yes I am scared to death and wont know anything until march5th and of all things my doc. just moved I wasn't even told that she was leaving-i am learning some things on this site,i was told that a lot of my problem was a when I was a lone I had time to think about this and the anxiety would start so I took her/his advice and called the clinic and the nurse that I saw was so understanding and gave me a few pills to help my nerves untill next month and trust me when I tell you it takes an act of God to get any meds over here in the U.S-please let us know how your session went to day,i am learning right along with you! (and am just as confused):
Hi it went well spoke to physiotherapist who is running PR she went through again some things with me...like you I can't wait to see my consultant so I hopefully know what's what...as still confused about my condition...she said mine is due to out of control asthma...when I asked what type of COPD I had she put asthma in the copd category..she said mine was mild??? Respiritory nurse said moderate nearer mild.. my doctor said moderate severe?????? So need really to see consultant...I have messaged you did you not get it?? I don't want you to think I have abandoned you just need some time out
How are you
I am and yes we both need to hang on in there ...just back from having accuputure to see if it helps with breathing anxiety and mucus ...having 6 sessions ..it has relaxed me and not sure if it's in my head but feel less mucus in back of throat...got pulmonary rehab again tomorrow...did you get my message it's next to the big bell
I not convinced I am will see what consultant said and yes would feel better if I was but will see what consultant says ...but more about you what have you learnt on here
one thing I learned was to watch the stress so I went to the nurse and she gave me a few pills -very mild ones but they do help and yes im scared as hell but i try not to think about it all the time and I have learned that there is the most wonderful understanding people in the world on this site! and what have you learned young lady!
Not sure yet ...well stress does not help I have leant that...how to bring up.mucus ...I learnt singing helps strengthen muscle which helps with breathing...so have found a sing and breath easy group near me..starting a week Monday ummm that people on here do mean well and want to support....I am trying not to obsess but that is still hard but trying
Hope pills are taking the edge off your stress ...the 5th will be here soon
helping a little bit, but I think what my biggest problem is -im in the dark about everything and it is driving me crazy and them my doctor ups and moves so I don't have a doctor and to see my pulmonologist be for the 5 of next month I would have to catch a flight rent a motel and all of that crazy stuff so I just have to wait! really hope things go well for you1
I have had internet probs all so hopefully this will eventually post
A break will do you the world of good plus a break from Mr. Google too😉
I too feel you would be advised to get help for the anxiety as it could very well be undoing all the good you have done over the past weeks,and that would be a shame.
Your children want you to be the best you can be, for them, and
the power to do that is in your hands.
Emily, I hesitate to response as so many people have given you good advice already.
I gave ACOS Asthma COPD Overlap Syndrome. Had COPD for 15 years and ACOS for last two of those.
It is correct that the condition can progress a little more quickly that plain old COPD.
However the upside is there is much to do to manage it well.
1. Keep yourself as well as possible.
2 Eat super healthily.
3.Make sure you are on the correct medication- I wasn’t but am now.
4. Exercise, cardio and resistance work really pays off. Pulmonary Rehab if you haven’t already been referred to a course.
Keep well, try not to worry.
Thank you question is what stsge are you..and for those who said I didn't know what I was talking about thank you...and for us does this help slow the progress down or not all I want from this forum is total honest...yes I am stressed but to imply I don't understand what i have read is hurtful i may not understand my condition but trying to.. going to speak to nurse today about this as I don't want to be feed false hope
15 years ago was stage 3, got myself back to stage 2 and have been at that ever since.
I have deteriorated in the stage over time, this is due to a couple of nasty pneumonias and the development of the Asthma component. Age has it’s effects as well. I am 70 years old.
I generally overwinter in Spain which really helps.
Yesterday I walked nearly 10 kilometres, whooooo!
For the last 18 months I have been needing Ambulatory Oxygen, which has been very helpful, but don’t panic, not everyone needs it!!
Will send you a link for an organisation which has really helped me
If there is anything else’s I can help with do let me know.
Look after yourself
How have you got back to stage 2 and why oxygen at stsge 2
I got back to stage 2 by stopping smoking and doing all those good things I needed to do to look after my self.
Stage 2 and oxygen therapy is because I have Type 1 Respiratory Failure which is due to the Emphysema...damage to the alveoli, so oxygen has trouble getting through to the lungs.
I can do more now I have the oxygen than I could do before, so can keep myself fitter!
I think I understand
I am still trying still tearful just want my consultant appointment so he can confirm or challenge what has already been said to me and I can have the appropriate treatment for my symptoms..hope you are well. I will feedback after my appointment 25th