I was diagnosed with copd. Ten yrs. ago have been Hospitalised 4times.

My peak flow is 130---135 at times, I do not have a cough ....never did have but so breathless I now have to hire a scooter to do my shopping, everything is an effort.

As my oxygen levels are ninety percent I fail to understand all this, my energy levels are desperate and I get quite depressed at times as there are so many events I miss, just to exhausted to attend, I am sorry for not being as committed to this site as I should be but living alone gives me little time to be on my hope someone can put some light on this problem for me. Thanks for reading it.xx

30 Replies

  • Hi Baily, good to hear from you. When you are very breathless and struggling it does take it out of you. Pete is getting to be like this now although he does have a cough because of the sarcoidosis too. He struggles and gets exhausted and is hoping to get some answers from the Royal Brompton. His sats are also good but his breathing is not.

    Do you use oxygen at home? Pete doesn't at the moment but I don't know for how much longer. I would get in touch with your GP or even call the BLF nurses and see if you can get some advice. It does sound as if you need some help there.

    Sending you lots of good wishes and hope you get some good results. xxxx

  • Thank you Sassy, I don,t need oxygen, I am upset as my GP. is not sure now if it is COPD. So what is it, Don,t worry just having a bad day, feeling isolated as I hate being stuck in the house.... Don,t we all....x

  • " I am upset as my GP. is not sure now if it is COPD". You need to ask yourself whether you need to go higher than your GP. I mean, you've been hospitalised four times and he's not sure? You need to be in the area of consultants and if your GP's not sure after all this then you need a more expert appraisal. Also, I'm sorry but use of a peak flow isn't much use in COPD these days? What part of the country and what resources are available?

  • Dear Baily,

    I feel exactly the same, although I am on Oxygen, my sats bear no relation to my breathlessness. I feel that stress and panic play a large part.. Eg if I have had problems doing something before, I find myself being scared to do them again or trying to do them feeling a tiny bit anxious and ending up in a full blown 'attack', even if my sats are good, moreover, sometimes when my sats are low I am able to do a lot more than I would expect.

    It is also down to fitness of course. It takes so much out of you just to breath. Also eating as well as you can, which I find hard. I need to find a good diet as I struggle to find foods that I can easily prepare..

    The main thing I believe is to stay calm and be of good heart and cheer. Loneliness and cabin fever are yet another awful aspect of this disease and can make things a lot worse. Don't linger on the bad, get into a routine, taking time each day to do something you love. ultimately, we just have to keep strong and do what we can and enjoy what we can-do.

    Good luck to you friend, know that you are not alone, there are always many good and understanding people on here.

    I hope I have been of some help.

    Warm wishes Kelda

  • Kelda, thank you, most days I just get on with it but the fact that I have four Daughters.... who do not live in Inverness hurts as they have no empathy. However they all have busy lives as I did myself at one time. Tomorrow is another day...xx

  • Hi Baily,

    I am very sorry to hear of your plight, My oxygen level is 98 but my lung function is now down to 15% this is making me very tired and sleeping a lot. I had loads of good avice from guys/girls here stay in touch, My advice would be to have all the tests again as it seems a long time. I have tests every year. light walking arm excises are good for me. Eating I try to eat a lot of soft fruits, actimel,porridge, scrambled eggs with bread not toast. things that I can eat with much effort but fresh always.

    Have you told your daughters everything? If not then may I suggest that you do down to the feeling that they seem not to be bothered! I have some good friends around me, however I cannot expect them to understand everything, here is the place for that or the BLF.

    I really do wish you well call me any day/night if you feel lonely or help

    Eric :)

  • Was struck by your reply Baily. I have two daughters, one in Australia and one in Qatar and they are rarely in touch! Seems to me that having busy lives is a good excuse for them and a bit of sympathy never goes amiss. I know where you are coming from exactly and some days I find I am filled with horror at how I can have brought up two of the most seemingly uncaring people! It is not by example I can assure you as I looked after my own mother until her last day on earth. I have started writing down my most vindictive feelings as I have to get rid of it somehow! Take care and be kind to yourself! Juney

  • hmm the fact your using a peak flow is unusual i have never used one of them...i would also say have a chat with your gp and get some investigation done as your original diagnosis was a long time ago,,,perhaps you should tell your daughters how your feeling they may not realise how bad your really mum was a great one for looking like she coped well


  • Hi, I can sympathise with your breathlessness when your 02 levels aren't too bad. My daughter has had to call for an ambulance in the past because I could hardly breathe but the paramedics said my oxygen levels were ok. It's maybe because the 02 and C02 levels are out of balance...I don't know.

    Have you been seen by a consultant recently, have your medications been reviewed?

    You can notice from this site that what suits one person may not be right for another.

    I would make an appointment with your gp as soon as you can...maybe book a double session and explain exactly how you feel and ask to be referred to a respiratory expert

    The BLF helpline give good advice, they are open during the working week.

    Take care and get all the help you can.

  • Thanks, great but but they simply Don,t have the time any more, plus I have so many health problems poor soul is confused himself.... Will try the Help line......take care..😉😉

  • Hi,

    I'm much the same as yourself I've got COPD also asthmatic as well as a good few other I was one of the guys who was never indoors watching TV I loved working on my garden & also had a workshop that kept me going. I'm now on oxygen 24/7 & struggle getting from one room to another. The things to look out for is depression it creeps up on you & before u know it you start thinking is it worth carrying on but there's new drugs that are great including a new inhaler. I have a freind who's son is 42yrs old & was never out the hospital & I've now been told he's got the all clear & off all inhalers & medication. I can be just off my nebuliser & still gasping for breath. I spend a lot of time on the internet searching to see if new medicines have been found & look on various forums. I'm now 61 & had asthma since I was eight & it still scares me but find if u stop fussing & worrying it helps. I hope this helps u understand that your not alone as there are thousands like us out there.

    Take care freind.x

  • After reading that I feel bad at complaining, yes depression does come into it,but I,m a wee fighter and with this site,s help I,ll get there....God bless. x

  • Hello Baily, you sound confused like many of us with the illness. Your peak flow sounds low but everyone is different, age makes a bit of a difference to peak flow too. One of the things that help the breathing is Pulmonary rehab or breathing exercises at home.It is a vicious circle you need exercise to improve your health even though it is not curable, it is about managing your individual symptoms to make you feel better. Are there no groups near you? I ask because I live alone and it is hard. I am a member of some local groups, then I hear a new one is starting called armchair yoga for people with COPD , which I have had for over six years diagnosed. Wales is trying another type of approach for this long term illness. This site is for chat without going anywhere . I have the cough bit ,breathlessness if I go too fast, and have other problems besides COPD. I have a stair lift and many adaptations to make life easier so don't feel down about using a scooter if that helps, I am registered to use a bus service door to door for disabled, but still manage to shop,go out with friends, attend groups as long as they are ground floor or a lift is available. I do take three inhalers in order to maintain my health, so maybe you may need stronger drugs to help your breathing. Sorry it is long but I hope it helps you see what some can achieve given time and determination. I can be contacted by private message if you need a chat and many others on hear are there to support you if you ask. Hope you do come back to the post so we can chat further. Take care

  • How kind of you to be so caring, I manage to walk every day (. while well that is ). The thing is I do to much and like you have other health problems, then I collapse and can,t do anything, I guess I am just feeling sorry for myself at the moment.....God bless....x

  • Don't worry Baily we all have down times, but please try and get that breathing up it will make you feel better xx

  • Hi there sorry to hear your struggling have you tried a salt pipe?

    They are wonderful it uses natural Himalayan salt which helps clear your lungs it's really helped with my asthma especially when I got bronchitis this winter. Give it a try :)

    You ll find them on amazon or in health shops.All the best

  • Sounds a brilliant idea, thanks a million......x

  • Good Morning Baily, My husband suffers with severe COPD and has done for about 12 years. He does cough - not a lot but he definitely coughs! He does use oxygen now when he is walking - he did a six minute walking test and during that his SATS dropped to 84 but when he is just sat down they are usually 93/94. Have you done a walking test?

    I would recommend that you ring the helpline - the nurses will be able to advise you what you is avaiable and perhaps advise you what action to take eg. talking to your doctor. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm.

    Take good care, Lots of love TAD xxx

  • Thank you Tad for phone no. I will definately use it. God Bless you both...x

  • Hi Breathless Im so sorry to her you are depressed Ive not done anything for four months, I do cough and I have chronic bronchitis but yesterday I started back at the gym it's amazing what a bit of exercise can do I didn't do much has they have all new machines since I was last there but hay what I did has helped me this morning x have you been to pulmonary rehabilitation get your Dr to give you a referral to one you meet people there the same has yourself let me no how you get on take care xx

  • I don't write much...but I do read this blog everyday. I have COPD and I can only walk about six or seven steps without resting. My o2 requirements very a great deal when I am walking I am at about 5L, climbing stairs (8L) sitting I can go down to needing no o2. I have had to start using a medical scooter. I am still working full time in an office.

  • Hi, has a ton of video webinars in its archive, all explaining why we can be SOB with high sats and how to handle it all. Very informative. Also, if you go on youtube and find Burke Rehabilitation, in their videos isone called COPD treatments and rehab, upper body exercises, its helpful and full length so you can follow along. If you want more aerobic action, watch our Tonys videos, start with this one

    Hope some of this helps you and that you feel easier soon. x

  • Thanks....x

  • Hi Breathless

    Just wondering what your spirometry test results are. Don't believe you said.

    Rubyxx 😊

  • Spiromarty test, sorry Don,t know what that means.......

  • Its a test they give you to diagnose breath into something similar to the peak flow. It tells you your fev1 and what stage of copd you have.

    If you haven't had it done, you should speak to doctor about it.

    Rubyxx 😊

  • Thanks Ruby, I have had that done in Hospital but they did,nt explain to what it was for and stupid me didn't, ask thought all would be explained in a letter. To tired now to go on but will keep in touch...x

  • You should get a copy of it. That way you know where your at with the copd.


  • Baily, If your GP is not very cooperative, I would ask him to refer you to the pulmonary nurse team. They are more down to earth and know the anxiety a patient has. They can refer you to a physiotherapist and to an assessment that might lead you to some gentle exercises.

    Have you got a consultant? if not, ask to be referred, because your GP probably only has a limited knowledge of lung diseases. You require specialist help that you are entitled to. Hope you get help soon. Mic

  • Bailey I have much the same kind of life as you. I have four sons who do not live a long way from me but are uncaring. I put that down to the fact that they don't understand what I'm dealing with. Also I've always been very independent and they don't see me as needing any help now.

    My FEV is 34% and my oxygen reading is usually between 89 and 90 so I'm SOB most of the time. At the moment I'm having an exacerbation of COPD. It's exercise induced because if I sit at the computer for a while I can breath quite easily.

    I'm about to go to pulmonary rehab classes in the hope I can improve my exercise ability. I used to be very active but not any more. I don't like being inactive.

    My GP knows very little about COPD and what she does say is incorrect most times. She really has no clue. I've recently seen a respiratory specialist but we didn't really hit it off and he's a long drive from where I live. I'm going to ask my GP for a referral to a specialist who is closer. That will probably annoy her as she really wants me to continue with the fellow I don't particularly like much.

    I wish you well and wonder how you are going now.

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