I go for my test this afternoon and don't know if it would be a good thing to ask for a copy of my results or not. Maybe better if I don't know. What do you think?
I would definitely want to know my results. I have got mine coming up next week, xmas day and i will be asking for my results as i want to know if i have improved or not.
Thankyou Merv. I'll think about it.
I think this is a more difficult question - for me personally I would always want my results but my husband does not want his results. I realised that really the results don't matter - only to the Doctors. If he was well and seemed to be coping then for me thats the best yard stick. Last October he had the dreaded annual check - (dreaded for him he has severe white coat syndrome) and his FEV was 27% this was another annual drop and he left feeling quite defeated although in fact we had had a good year and he was quite well. This October the FEV% was 32% and two weeks ago was 39%. For me he doesnt seem very different.
He is involved in a trial at a local hospital and a spirometry test is done at the beginning. Interestingly the nurse seemed a little dismissive of the results when I explained my husband feels under pressure.
Having said all that it might be a good idea to have a copy to keep yourself with your own details at home in case you ever need them and you can take them to the doctor, consultant etc. The best of luck for today. Lots of love TAD xxx
Thanks for your good wishes TAD. I too have white coat syndrome and have to take my own bp. I actually feel on top of the world most of the time, and can do any physical work within reason, thanks to fostair, so as I don't know any of my details maybe I'll stay in the dark. I'll think about it. I have to take my breathing book for the nurse to complete - it's what they gave us on the rehab. programme, probably you are familiar with it. I have never filled it in. I'm an ostrich.
You sound like my husband! AND that is not a bad thing - it is the way in which you can cope. You must be comfortable with any decisions you make. You make a very valid point - what do the results mean to us as laymen? I leave the results to those that know. My husbands BP was so high at the surgery last time the nurse asked us to wait for twenty mins to take it again - it has risen so much in that 20 mins she called a doctor as she felt he should be going to hospital! I explained that it would probably give him a heart attack if they took him to hospital. He was taking his BP every day twice a day but I have told him just to take it occasionally and as long as it is only slightly high we wont worry!! Just take a deep breath (well as much as you can !!) and perhaps a little "rescue remedy" ( I use the pastilles). Take good care xxx
Glad I am not on my own then. Your poor husband! No wonder he has an aversion. What a good job he has you. Excellent idea not to do bp every day.
I'm just about to take my bp and will phone it through so nursey will have it to hand when I go. So...breathe easy - I still have to take it a couple of times to be sure!
I would want a copy of mine...it depends on how much you worry about figures... I like to know mine, but l don't worry.
I go on how l feel.
Good luck with your test.
Velvet xx 🎅🎅
Thankyou Velvet, I too go on how I feel but I'll think about assking for a copy. Knowing me I'd be reading too much in it. so I'll play it by ear.
heh heh Tee.....................good enough reason.
Hi A1j1S, hope you get good results at your spirometry test today.
You could always take the results & if you don't want to see them just put them away in a drawer.
You might find you wished you had taken them. Just a thought!
Take care 🌺
Sound advice and I thankyou. Just phoned my bp in to the surgery 131/65.
Don't know why I get worked up about it. I hate that big blowing out tube.
I know I sympathise with you. I don't like it either.
Just think of it like this..... It's only a few minutes out of your day. By dinner time it will be a distant memory!
Good luck, be brave 👍
Appointment is 10 past three - so I'll take my mind off it by going to the library first. Gosh I am such a wimp. Thanks for your kind support.
Ok so by 20 past 3 or thereabouts you will be finished & on your way home! 😀
That will be good then. Merlin will be sitting on my bed looking through the window. I have a feeling this will be my first test since I was diagnosed a couple of years ago. I only remember because of the blowing into the big tube.
Relax! You will be absolutely fine. I don't like going for my check ups but really there's nothing much to worry about. 🌺
O.K. There are so so many others on here who are really poorly it makes me feel guilty even thinking about it.
good luck today with your test , I normally get a copy of mine
Thankyou - I don't understand why I have not been offered a copy. Cost of the paper I suppose...
well my gps never give me a copy but when the consultant done the test I asked him if I could have a copy
Consultant! You are posh - my doctors is closing down and they don't seem able to keep the staff - so I may know the nurse or I may not - all in the lap of the gods.
I say get a copy. If you don't watch out for yourself, no one else will. I have all my blood work and spirometry tests together in a folder. It's good to know
If your numbers improved. Then you know you're doing something right.
If they went down, maybe you can make some changes. I can't imagine not wanting to know. This is your body and you are in charge. Good luck on your test.
Rubyxx 😊 😊
O.K. thankyou Ruby. As I already said I am an ostrich. Probably if I felt poorly I would be pushing for it. I do really want to know how good or how bad it is. If my family knew how I felt they would not believe the way I am behaving.
I'm back again. I was just wondering if you know what stage copd you are. Don't remember you saying.
I haven't got a clue Ruby. I'll ask.
OK she has given me a print out, and said all the results are a vast improvement on the ones in 2013...there again I think it is down to the Fostair which I did not have then. The one second tests I did are 103% more than the predicted. It is moderate copd anyway.
I can't understand that as I can do anything and everything I did before I was diagnosed. Anyway it is not for me to reason why. I'm still here and breathing so I am jolly happy.
Glad to hear your good news! Nothing to worry about then 🤔
You can relax now & keep a look out for your hedgehogs. 🌺
I will be at my station tonight from about half eight onwards
Just thinking about your test. 103% you said. If your that high, you wouldn't even have copd! Under 80% would be copd.
That is what she said Ruby - 103% over the predicted, but I could not do it for the next three. It seems to be a blip, but you know to yourself when you cannot get enough air in to walk fast or run for a flipping bus and all the other stuff there is something wrong. Back on my bike then.
Hi A1J1S, I am just the same...you should see me when I have to go to the dentist or the optician....a bit like the cat going to the vet!
I was given the results of my last Spirometry test...but I am debating whether I want to know the next time.
I am definitely head in the sand
I love the comparison! I feel a real wimp. So glad I am not on my own knitter.
I'd want to have them - although I've never been given a copy - as a baseline for monitoring your progress. Not obsessive monitoring but just to have an idea of where you stand.
I hate doing the tests too but that's mainly because, like Tad's husband, I'm afraid of getting a bad result. But we've had lots of examples here recently of people increasing their Fev so obviously the numbers aren't carved in stone.
Hope it goes okay for you !
Nurse was pleased anyway, so I must be too! Read my reply to Ruby.
Thankyou and thank all of you for your support
A1J1S I always keep all my test results in a folder together with hospital letters etc. that does not mean that I take much notice of them its how I feel at the end of the day not a lot of numbers, but it is nice to be able to compare with previous results to see which way I am heading, my consultant said that the readings can vary from day to day anyhow. Glad that you have had a good result.
Good idea and how right you are...I'll just put it in the breath book - can't understand the print out anyway
I keep all my results so I can analyse the results and monitor my progress.
You are better than me! I see numbers and my mind goes blank. I've put the results in the back of the breathing book. My daughter will understand them when she comes to stay.
Knowledge is a powerful thing. It will allow you to fight this in order to live a normal life.
You are so right, but I am not hampered by copd at all once I have had Fostair in the a.m. I live my life pretty much as I always have done and it is very full. If it means I am not knowledgeable about my stuff then I am in ignorance but jolly happy.
Hon, COPD is a progressive disease for which there is no cure.
It's great that you can live a normal life at this stage of your COPD. You are probably at the mild stage but it won't always be like this. To be able to deal with this disease you need to arm yourself with knowledge. As is often said, "know thine enemy".
I too was living a normal lifestyle for a few years with copd until 10 months ago, then one morning things changed. I woke up very short of breath and was having an exacerbation. I developed one lung infection after another. My lungs did not recover from this assault. Knowing what I know now I would have taken steps to prevent recurrent infections.
Our GP's know very little about COPD so it's up to us to learn as much as we can. Had I known then what to do at the first sign of an exacerbation I probably would not have had all those infections that my GP had no idea how to deal with.
I wish you the best.
You have frightened me to death now. What steps are you talking about? I thought all I had to do was try and avoid people sneezing and coughing, keep up my normal healthy lifestyle etc and have the rescue pack on hand. You have painted me a terrifying picture
Hi I would be frightened as well after reading that last reply. COPD affects people differently. If you take your inhaler every day and look after yourself. I don't see why you shouldn't live a normal life. I know it is not curable. If your COPD is mild it should stay like that for a long time. If you do all the right things. I take my rescue medication as soon as I start to cough. Mine has got really bad. But that's just me. The last time I had my yearly checkup I was told my breathing was better than the year before. But my systems didn't show that I don't take any notice of the tests results they are only numbers. You only know how you are and how you are feeling take care x
Bless23. What is it about my experience that frightens you? Exacerbations happen, they're part and parcel of having COPD. My breathing is quite good at present and I do everything I can to keep it that way.
Inhalers won't prevent an exacerbation and no one knows how long any stage of COPD will last whether it be mild, moderate or severe. It's living in fairyland to think that because symptoms are mild that they'll remain mild for a long time. COPD is progressive. Knowledge allows us to slow down the progression.
What do you consider to be 'all the right things'? If you are doing 'all the right things', why do you think your breathing has 'got really bad'?
Coughing is part of COPD. We have mucus in our lungs and coughing helps get it up and out. I take rescue meds only when I suspect there is inflammation and/or infection looming. Coughing alone doesn't warrant me taking rescue meds.
The result of a lung function test is a lot more than numbers. The numbers inform you of volume of your lungs that are actually functioning. They inform you of the strength and volume of your breathing. If you learn what these numbers are telling you, you're gaining knowledge that will serve you well.
Yes, only we know how we feel. If we learn what is normal for us it allows us to take affirmative action to stay as well as possible in the event of a looming infection and/or exacerbation. Living in ignorance of COPD and what it can do to us is not smart when there is so much valuable information available.
Hi brondana I don't live in fairyland. I know about COPD . I live in Scotland with one of the best health services in the country. I get exacerbation without an infection. If you take your preventor inhaler properly they should do what they are supposed to do when I was first diagnosed with COPD I would only have an exacerbation in Feb and October some times with an infection sometimes without. Over the past 10 years I have always had a cough my last doctor said that he had known me for 19 years and I had always had a cough. As I said COPD affects people differently I was told by a consultant that no 2 people are the same. In the past 2 years my breathing has got worse the medication they give me never clears the the breathlessness or the cough even going on a nebuliser dose not cleat it. So if nothing is working there must be something else causing it. I am not really interested in the figurs there just for the doctors. I just want to be able to breathe. I don't let my COPD stop me from doing any thing I just live with It at a slower pace people deal with things differently
Hi Bless23. We all do what we have to do and what we think is the best thing for us.
Yes, we can have an exacerbation without an infection. An untreated or poorly treated exacerbation will for sure lead to an infection.
We know what causes infections. Either bacteria or viruses. No inhaler will prevent us from getting either of those things when we are vulnerable to them.
As COPD progresses our breathing gets worse and medication can't reverse an exacerbation. Our breathing doesn't get back to where it was prior to the exacerbation.
We differ in our opinion about the importance of knowing what the numbers mean. So be it.
Thankyou for your letter - it has has removed my anxieties. I'm sorry that your copd has become bad and I appreciate your response even more in that you have taken the time to alleviate some of my concerns. I have a funny feeling that the Doctors I have seen at my local practice do not actually know much about the disease, and seem to be floundering themselves. Firstly they were treating me for cellulitis as one of my ankles had become slightly swollen, (it's gone back to normal again now) then I was given a sputum sample bottle with someone else's name and NHS details on it. I double check everything now. I'm very glad I joined this Community, where everyone seems so positive and helpful.
Your welcome Jennifer. Take care
Sorry to frighten you A1j1S. My post is an account of the sudden progression of COPD after 7 years of living a normal life despite the fact I'd been diagnosed with severe COPD. There were warning signs I didn't recognise because I didn't know enough. I'm unsure of which part of my experience presents a terrifying picture for you.
My GP also didn't know enough about COPD to prescribe the correct antibiotic despite me asking for what I needed. GP said the antibiotic I wanted was too strong for my light body weight and prescribed a lesser a/biotic that didn't work, thus, my deterioration continued for two months while my breathing and the condition of my lungs worsened. (I refused to be hospitalised).
On a day my GP was away I saw a more senior GP who immediately prescribed the a/biotic I needed and ordered a full blood test and ct scan of my lungs. The blood test revealed a long standing infection! On strong antibiotics I improved but the deterioration of my lung function is permanent. Life is different now. There are many things I can no longer do.
My steps: to understand as much as I can learn about COPD. To recognise the first sign of infection and know which drugs work for me, they're in my rescue pack. To check my blood oxygen level several times a day when I'm sob. To use pursed lip breathing to prevent panic. An exacerbation will happen quickly if I miss the clues my body gives me. To know what my new 'normal' is. My diet needs a shake up but I exercise daily to keep my lungs in as good a condition as possible. The most important thing in my arsenal is to 'know my disease. A head in the sand attitude won't work with COPD.
Knowledge is power.
All the best to you.
Thankyou for writing back in more detail. I appreciate your time and for telling me about your steps. I do listen to my body and look after it best I can. I am very glad I joined this Group because I have a funny feeling not enough is known by our GP's and specialist nurses seem to be in short supply. Much I read on here is helpful for I like the way you all support each other and are so positive.
Thankyou again and I wish you well.
No thanks are necessary A1j1S but for the thanks you gave...you are very welcome.
I'm glad you joined this group too and I appreciate that you didn't rip my head off for making a post that was blunt but honest.
Breathe easy and take care.
I would always ask for results. My GP Practice have a poor attitude to this and will not even tell you the results let alone have them. Hospital were the complete opposite and even gave me a rough break down of what they had found while doing it!
That was very good of your hospital. When I asked for a printout the nurse was not exactly overjoyed, but she did give it to me.
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