hi my names jan and i am new here and would like help or advice on copd

hi my names jan i am new on here i wonder if someone can help me please i was taken into hospital 4months ago i was fighting for my breath they gave me oxygen/salbutamol&advent mixed in nebulizer steroids/antibiotics also blood tests and blood fron my arteries in wrist they had done chest xray before i was discharged they asked one of the lung specialist to do a spirometry test for them i did that but it was hard because the way my breathing is then when they did my discharge letter for my gp they wrote likely copd/ .asthma as there were mixed readings on spirometerso now i am so confused the paramedics have been out to me a few times now to help me with breathing problem they have been great one of them got me to do a peak flow test and she said it was a hundred well again i.m confused is this good or bad last week i went for lung function test the 2nd blow into spirometer the dr took it away as i was struggling and went dizzy i asked could we do it again and she said no its not possibleso i asked well can i get another appointment to which she said no not possible so now how do i know if i have copd or asthma and what lvl am i i.m am so scared and confused my dr at hospital has given me salbutamol sulphate airomir inhaler plus steretide aquahaler i.m already disabled because i had stroke 3yrs ago i cant walk more than 5/10 ft then i.m in big trouble because i cant breath sorry to moan but any help would be very much appreciated thank you

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  • So sorry to hear your news and about your difficulties. I would be asking your GP to refer you to a consulting respiratory specialist at the hospital so that you can get thorough tests done (including a CT scan, which can give a more precise account of your lung damage) also by being under a respiratory consultant you will likely get a more accurate diagnosis.

    It is possible for people to have both asthma and COPD ie asthma and emphysema, or asthma, emphysema and bronchitis, all come under COPD. Chronic asthma can also be described as someone having COPD, sometimes we have more than one respiratory problem going on.

    Having a heart condition can also affect breathing and in turn this can make things much more difficult, for breathing, mobility and the ability to exercise To help you understand how to manage your symptoms and regain some quality of life, do ask you doctor, GP or consultant about a pulmonary rehabilitation course, this may help you to regain some mobility and in turn help you breathe easier. Either GP or Consultant can refer you for a PR course.

    To understand more about pulmonary rehabilitation, view a previous post about this. Just click on the link below, then click on the videos:

    blf.healthunlocked.com/blog...

    I hope this information has been of some help to you. Take good care.

    Welcome to BLF health unlocked.

    Good wishes.

  • hi thank you for replying i am under a consultant thats why i.m so confused i dont know why they havent done ct scan and so forth as for pulmonary rehabilitation i have nnurses coming into me from there but i.m not allowed to go to do these excercises because of my disabilities so i am stuck in a rut as the saying goes but i just want to know what i have and what level it is and i have no way of getting to know anything i used to smoke and after i had my stroke i stopped thats 3yrs ago now as i say the paramedic did a peak flow test for me that read 100 but again i dont know if thats good or bad and was it for asthma or copd thankk you for being there you take care also

  • hi zoee i watched the video.s they really look great i just wish i could do half of them i really do but thank you for sharing with me

  • Hi Jan,

    So glad you are already under a condultant. I think the Peak flow of 100 is not so good but really you need advice and instruction on using this at home and when to call in the docs and medics, when your peak flow drops below a certain level. Although you mentioned you have nurses go in to see you, they will be keeping an eye on this for you no doubt. Peak flow is usually for asthma patients, but I do know of people with chronic asthma / COPD that use this. I have emphysema and don't use a peak flow, but a dear friend of mine used one and she would go see the doc when hers gave a consistent low reading. I usually have an annual lung function / spirometry test which is different to peak flow.

    So sorry you are not able to exercise to do PR or get out, but thankfully you do have help coming in to assist you with movement. Do you see an Occupational Therapist? This could help you further, also if you phone the BLF helpline 03000 030 555 10am to 6pm weekdays they will be able to offer you further advice on things you may be able to access to make things more comfortable for you.

    I hope something can be done to make things easier for you and help you understand what is going on with your condition. Next time the Nurse or Doc visits ask him or her to explain things to you about the peak flow, and anything else you are unsure of.

    All good wishes

    Zoee

  • thanks zoee it was the paramedic who did the peak flow but i just thought that was because my breathing was so bad as i said i went for full lung test last thursday the pulmologist took my weight and height then she put me on the spirometer i did the 1st blow then the 2nd one when you have to breath in deep then exhale she snatched the spirometer of me because i couldnt breath and went dizzy i said to her i do this at home sometimes so i.m used to it so can we please do it again because i want to know the results she went into next office and came back with doctor who said definatly not sorry they gave me some ice water to drink whilst my breathing got bit better then i asked her well please can you make me another appointment and she said no i.m sorry we cant do that for you my gps been in today but they dont help because they dont tell me anything i have my resperatory nurse coming tomorrow morning at 11am so i will just have to wait and see what she says ooooh dear i.m so confused and down i.m really tired of it all .....sorry to winge i.m 66yrs old and iv always been so active so its just not normal to me i became disabled in 1996 and its just got me down if you understand never mind i.m still alive ey thats the main thing lol xxx

  • Can see why noah it has rained for a month the building of a floating zoo is on my to do list lol

  • its been raining for a lot longer than a month here and it just keeps coming lol

  • Hi Jan,

    Welcome! You have had a real rough time, I am sorry to hear. A lack of information is commonplace I think from reading what people say on here and I think half the battle is getting the right diagnosis and then managing it. Hopefully everything will fall into place soon so you can start to rebuild your life. Life with COPD isn't all that bad, once you know what you are dealing with and learn your limitations and adapt accordingly.

  • hi tanyamarie you are so right when you say lack of information is bad thats what i am trying to say in my own clumsey way lol if only i could find out then i would know just what i.m dealing with iv learned to live with all my other problems but now this has come along and without them being able to do the lung function test then i dont know how i.m going to find out but thank you for your help you take care now

  • Hi Jan welcome to site - ive only been here about a short time and I have found everyone very supportive. As far as I am aware asthma does not generally come under COPD but is often wrongly misdiagnosed as that. As an asthma sufferer myself your symptons sound more asthmatic than COPD. There are a lot of very good inhalers for asthma and I think once you have been using prescribed ones your condition will improve a lot. I take them and my spirometry test is usually around 300. I am 58 and been told I should be around 450 so 100 is very low. I agree that what is frightening is not knowing but I would suggest you take the inhaler(s) you have been given and use them regularly. I do and it really helps.

    I do hope you get some answers Jan - sometimes you really have to push for them. All the best xx

  • Hello, I do not suffer with COPD but care for my husband. It is very frightening when you don't have the information and don't realise that you haven't got the information you want until the doctor/nurse has gone. The respiratory nurse my husband had was very good and very helpful. It is so difficult when you are struggling to breath never mind having to ask about your condition. Perhaps you could telephone the consultants' secretary and ask for an appointment. Take care and hope that you get some useful information. PS What about a local breath easy group? TAD xx

  • hi hypercat thank you for help i am on salbutamol sulphate airomir 2 puffs 4 times aday also seretide autohaler the purple one i take that 1 in a mornin and 1 at night but iv spoke to my respatory nurse this mornin and she says i definatly have copd as well but without bein able to do tests they dont know what level so it looks like i.l just keep taking medication and hope for best ey

  • I think thats best Jan. If they definiately know you have COPD as well then you should also be on COPD inhalers which I trust you are. Hopefully they will make you well enough to take a spirometry test so your level can be determined. Thats how I was diagnosed. All the best love xx

  • hi tadaw yes it is frightening enough with what you go through when you cant get your breath but not being able to find out the information you need to help you cope as well its hard but maybe i will phone consultant like you say and see what can be done but i cant get out to go to groups which doesnt help me either you are doing a great job taking care of your husband i know its not easy my husband looks after me but you take care now xx

  • hi everyone i hope you are all keeping well i have been told now that i do have copd so now i know for sure i wasd in hospital last week with trouble with my breathing again and they kept me on oxygen as well as my inhalers because i got pneumonia oh blimey that was scarey but reading through some of the blogs on this site i saw there are lots of you have sufferd with that too so it does help to know i.m not alone here they havent given me oxygen at home i dont know why because it does help a lot i am waiting now to see my respatory nurse but shes on holiday and not back until monday so i will ask her why i.m not given it i know we have to get on with life and not to let it get to us so i.m thinking of you all out there that have this condition and i get a lot of strength reading your comments so thank you all very much so take care and god bless you all

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