Hi it’s the first time posting, could any one tell me what my scores mean and it’s it mild, moderate, severe, very severe COPD. And would I be able to claim pip ?
My FVC 1.88 and my FEV1 0.80
FEV1%m 42.62
I’ve added a picture of the screen if you can make sense of it, the nurse wouldn’t tell anything.
Thank you to anyone who can answer my questions
Michelle
What are your lung function results
I’ve added a photo of the screen if this helps
I’m just another person with copd not a dr. But it looks like you’re at normal to very mild. If I’m reading it correctly. Others may give their input.
Thank you
What were you told? I was reading off the predicted second column. My lung function test papers don’t look anything like yours. My copies are printed out in a very different format. USA. So I’m no authority. If your fev1% is 79% you are normal to mild.
I’m in the uk, this was done yesterday and the nurse didn’t tell me anything Evan though I asked her she said I had to wait to see the dr on the 24th of this month
I appreciate that my respiratory therapist explains the results immediately to me. And my printouts are super easy to read and understand.
How do you feel? What impact is your diagnosis having on your life? Apply for PIP if you feel you might be eligible. Get the form. The CAB will help, as indeed the BLF have a help line to help you complete the form. Don't panic! With the proper meds and a good diet and exercise you can stop the progression. I am guessing you have stopped smoking, that would be the first step. Good luck Murph, you are not alone, looking forward to hearing from you
Hi thank you for replying, I don’t know how I feel maybe sad and it wasn’t me but you know sometimes you have to get on with it. So chin up and I will do everything I can to slow it down. Could you tell me more about CAB I’ve not heard of them.
Thanks again
Michelle
Citizens Advice Bureau. Get your form first ... good luck Michelle ... I am 29% COPD and haven't got the energy to complete the form. You tell 'em but there is best advice out there, use it
Silly me why didn’t I know that. I will try but not sure I will get it, Stamford you should try to get I mean 29% that’s quite low maybe get someone to fill them out for you.
Thank you
Michelle
It is low Michelle but it doesn't stop me doing stuff. Plenty of 20 minutes a day walking albeit slowly, good diet and good nights rest. I am at a low ebb at the moment so I am not best person to talk too. Try your absolute best to get away from the depression that comes with the diagnosis. Listen to your favourite music, dance like nobody is watching!
Well thank you answering my question Evan though you don’t feel up to it, I sure hope I don’t get depressed, and I will take your advice on listening to music taking walks good advice
Thank you
Look after your diet. Sing in the shower .. look forward .. sleep well .. breathe deep!
Good luck with the CAB, they used to be great but over the last 10 years this government has replaced them with voluntary pensioners who do as the council tells them, they used to be independent but they are now within the council offices, they are told what to do by the council officers.
Thanks for replying Maybe I won’t bother with them if their not very good
Then ring the BLF helpline, they will walk you through it. Good luck x
Not much help , maybe I was unlucky
Citizens Advice not CAB anymore, are not told what to do by any Council officials. They are there to give independent advice and assist individuals through complex issues. A biased individual opinion does not help. I would suggest anyone who needs help completing forms gives them a try and form your own opinion.
Thanks for replying I will give them a call and see if they can help me in any way of advice, I’ve just got off the phone from BLF I asked what kind of advice they give as I’m new to this she said they can advise about benefits, so I ask her she said the woman is in tomorrow ok, she said they can talk about my health so I asked her about my score she said I would have to talk to my doctors ok, then I asked her about pip she said I would have to talk to dwp, but if I need to talk about anything they are their just a phone call away.
It isn't an easy process. I don't think you can get PIP just based on readings from tests. The application is very in depth about how you can manage your life day to day. Good luck!
Thank you, how are you feeling today
Well thanks dear for asking. Sometimes it all crowds in and you wonder where your ommph has gone. Have booked to see daughter and grandchildren in Italy. I have my route through Gatwick down to a T. Hey ho! Yes much better thanks. Good days and bad with COPD, stay positive is the trick. You have really cheered me on. Bless you
That’s great
Where i live in Stockport, the citizens advice bureau has moved from an independent building down the road and into the council offices, the advisors who were really good at the job have now gone and replaced with volunteers who don't have much of a clue, they disappear into a back room to ask advice of the council.
Probably moved into spare accommodation at Council offices to save costs. They are no longer called Bureau. Asking advice is not being told what to do and makes sense on queries regarding Housing Benefit or availability of rental properties.
Generalisations based on Stockport alone are unfair and could deter some from seeking good sensible sound advice.
Anyway I think we have said enough on that matter and I hope no one is put off asking advice, including in the Stockport area. Advice does not have to be followed and individuals can make a choice. Not getting the advice seems foolish.
As this forum is about respiratory issues I will make no further comment.
Majority of cab advisers are volunteers and when they go back to the main office it is to check the information system to ensure the client gets the correct advice. This is NOT provided by the Council.
I used to be a volunteer at CAB and they are independent even if their office is within the Councils property. I am sorry if someone has not had a good experience but the CAB can only do their best.
42% places you at severe stage or stage 3
I’m 25% end stage or very severe stage. Stage 4
I’m sorry to hear that. Just wished they would explain instead of just leaving me with no answers. But thank you for your reply’s
FEV1 of 42 % is not good but not too bad. You still have time through lifestyle changes to slow the progression down. Mainly by quitting smoking if you do smoke. It is not the end of your world yet by any means.
You need to keep up the pressure with your doctor's to be referred for a Pulmonary Rehabilitation course to learn how to manage your condition correctly.
Hi thank you for your reply, I definitely will put pressure on my doctors.
Why not ring up the blf on 03000 030 555. They work office hours
Anyone can claim pip but it is based not on your illness but how it affects you x
Thank you for your reply, I was thinking of giving them a call tomorrow .
Thanks hypercat, I think I will give it a bash too
Wish it was like this in the uk, their my results but they won’t tell you until you see the doctor, that’s why I took a photo of the screen when the nurse went out the room, so I could get more information from anyone else.
It is best to speak to a doctor. Does the FEV1 say 29 percent? Sometimes in the US they go by the FEV1/FVC ratio but 29 percent is low so try to see a doctor soon to see if there are inhalers or other treatment that can make you feel better.
Hi Michelle and welcome to the forum. I’m not sure how others are reading your results but to me your screenshot shows an FEV1 of 28% predicted. (It just shows that we’re not medically trained)!
You’re really best waiting to speak to the doctor about it but I realise that’s a long, frustrating and worrying wait. As Hypercat suggested, why not give the BLF a call in the meantime? They were really helpful to me when I got my diagnosis last year. They can even advise on filling out PIP applications (which you may be eligible for if your day to day life is affected by your health).
I hope you hang around here whatever the outcome because this forum is full of the kindest and most understanding people in the world. Best wishes. X
Hi thank you for replying I will be phoning BLF this morning
Let us know how you get on
We are all different as my Consultant told me 10yrs ago. They are just numbers and everyone reacts differently
I was diagnosed Severe COPD 10yrs ago still severe but I am active and well. My results 10yrs ago my Consultant informed me the gentleman who left in a wheelchair in front of me was only moderate but was on oxygen because he gave in. I have always been Positive and active and still lead a normal life 10 yrs on. Numbers mean nothing .
Hello Michelle and welcome. 👋😁
I have to say I'm not an expert either but an FEV1 at 42% (if accurate) is within the severe range. I was in the upper twenties and that was very severe. May I ask what your diagnosis is? Glad you found this lovely forum.
Best wishes to you,
Cas xx 🙋
Hi thanks for replying I have COPD that’s all I know at this time I will have to wait to see the doctor next week
Just to say good luck with Drs and everything. Find out as much as you can about what you can do to help yourself stay well. I am diagnosed copd earlier this year and felt mentally stronger once I got lots of information about looking after myself. Don't forget flu jab and pneumonia jab the dr should arrange for you too. All good wishes to you.
Thanks for replying I definitely will be finding out everything that will help me
I am pretty sure you are FEV1 % is 53% of the predicted value. 42.62 is 53% 0f the predicted 79.95. If the predicted value was a 100% then you would be at 42. Hope that helps.
Thanks for replying makes sense
I agree. I also think it's the 53% figure which is the correct indicator, in which case that is moderate. But it all depends on how you feel: I didn't get any symptoms until I was diagnosed as moderate/severe (50%) and, because I have an asthma component, the medication has increased this to 63%. I am not sure how helpful these fairly broad categories are to anyone; the main issue is to find out what's wrong and treat it.
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