Hi everyone I'm new on here can anyone help I had a lung function test done but don't have a clue what I'm looking at I've been told I have copd emphysema
Copd/emphysema : Hi everyone I'm new on... - Lung Conditions C...
Copd/emphysema
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Carron69
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55 Replies
•
Do you mean you have a copy of the results? If so you can ring the BLF nurses on their Helpline and they will help you to understand it. The number is 03000 030 555 and they are open during office hours.
Thank you very much I just keep getting told different thing I was on dla high motorbility had pip assessment they lowered it and now want my car back I'm homebound without it I also have fibromyalgia degenerative osteoarthritis
The BLF can also advise on benefits. Do give them a ring.
I have just called them and the man said that they can't tell me what the results are I'm mow confused
• in reply toCarron69
Hi Carron69 the nurses wouldn't be able to go through the results with you but they can discuss your condition and give you advice on questions you could be asking etc.
Give us a ring again and we'll book you in to speak with one of the nurses 
Hi
With regards Motability you should have had them notified as soon as you received notification of change to PIP they have things in place such as transition payments up to £2000 to help you keep mobile depending on the length of time you have been a customer.
As it stands now you will have to return the vehicle as soon as possible or you may incur charges. Depending on date of agreement and last payment by DWP.
With regards the reduction in award speak to BLF Helpline or local CAB to assist with addressing the claim and any appeals.
If you paid for any attachment, such as hoist etc you will be reimbursed for every full year left on your agreement.
If you claim is restated after appeal you can rejoin Motability with no penalties.
Hello. I have been on this site for quite a number of years whilst I had copd. I got a lot of help and advise. I have now had a double lung transplant (3years ago). I still come on the site and try to offer advise to anyone in this situation. The nurses on the helpline are very helpful. I have been really good since my transplant but recently I have been having problems with aching muscles causing difficulty walking, dressing etc. I just wanted to ask your advise o fibromyalgia as someone suggested it could be that. Hope you don.t mind me asking and if there is anything I can help you with don.t hesitate to ask me. Take care suee
Fibromyalgia is complicated to explain but I will do my best to help
Thankyou, I will look forward to hearing from you xx
I get constant headache I wake up felling tied even if I've had 10 hours sleep hypersensitive skin my tender points r elbows inside of the knees hips back of neck between shoulder blades they r the very tender areas feet feel like they going to explore when I get up in morning takes me ages to get to the loo coz of how much pain in some days I can't even get out of bed I get restless legs they r annoying when can't keep them still I also find the before I was diagnosed with it I could cope with banging my toe on bed but now if I bang anythink it seems to be so much painfull the medication I take for it is pregabilin and amitriptyline
Thankyou so much for that. I have peripheral neuropathy so have tried Pregabalin and amitryptilin but couldn't.t cope with the side affects. Been to docs today and they are referring me to a neurologist. I appreciate the info you have given me. If there is any help I can give you with copd please ask.
Thankyou
SueE
Some of my arm problems is I have bulging discs which is putting pressure on my nerves so I have lost alot of strength in my left arm also have shoulder impingement having op for them and consultant say coz I have fibromyalgia there is a 20% chance of it working
Ask your dr. for medication for restless leg syndrome. I suffered with no sleep for years until a dr. perscribed it and it literally changed my life!
No, they cannot give you the results but as qualified nurses they can help you to understand your condition.
I called them back a spoke to someone else gave them my number and hope they will call back I got so upset and confused when pip changed me to lower rate I think it's Dow to them not understanding lung conditions and how it affects people
From what I understand about it the graph anyone with copd the line starts lower and then goes down . Your line is at the top and than goes down . I got told they look for a triangle shape is good . Top line is ok and then goes down . If first line is low and goes lower it's poor ?
Hi if you put your results on here I am sure there will be one or two clever folk to help you understand them. . stone-UK springs to mind. x
Carron69• in reply to
Could I take pic and upload it
• in reply toCarron69
Don't see why not. You might have to add it to your post though. If you are on a lappy (not sure about other devices) click on the downward arrow at the bottom of your original post, click edit, add picture then resubmit it.
Also if you want to keep your post and replies more confidential you need to click on 'community only' at the bottom. x
Carron69• in reply to
Ok I'll give it ago
Carron69• in reply to
Just uploaded pic if this helps
Hi Carton, I'm sorry to hear you have so much stress when you are so poorly.
Didn't you ask for a mandatory reconsider on your PIP decision?
Some people have managed to get their decision changed just by calling them. I wouldn't just let it go. You will get there if you keep fighting. xx
I have only received papers from motorbility not dwp yet
I'm going to try and fight I just don't know where to start
Start with evidence from your Docter and any one else you see for your condition.
They should be able to give you some kind of letter stating how sick you are.
Don't let them fob you off. Then, if it's a form your filling in, go to your local CAB office, they will put you on their books and do the claiming for you. xx
Dear Carron69,
I was hoping I had that over what I did have, Chronic Obstructive Pulmonary Disease. with that you also get another one. either bronchial or emphysema. I had ILD and had to go on oxygen. Just make sure you use it to help you breath easier....Good luck Danna
Thank you I can't seem to get an answer from anywhere
I did put pic of my results but don't have a clue
I am not a doctor and I see O2TREES made a comment on it. You never said what your breathing was like but if I were to guess I would say your lung complicity is at 39 percent. What was your oxygen rate when they had you walk for six minutes???. Danna
Your results are consistent with moderate copd (that's the fev1 which is 62% of what would be predicted for your age gender height etc) and as you've been told you've got copd that makes sense. There is a written comment by the technician who did the test about restrictive functioning at the bottom which you could ask the BLF helpline nurse about, not sure exactly what that means and the writing is hard to understand.
Good luck with your appeal.
Thank you for the reply the only bit I can read is restricted pattern (DLCO) with a down arrow 39%
Hi
I agree in what you say, and Emphysema as already been mentioned. Which caused some confusion Emphysema is a obstructive lung condition but an FEV1/FEC of 91% indicates restrictive.
A quick search found,
spirxpert.com/gli_restricti...
which indicates spirometer is not a good guide for restrictive lung conditions.
Is it correct that the FEV1/FVC percentage should be similar to the FEV1 stone, for copd?
I'm so confused I keep getting told different things from doctors to nurses
Not even sure what theyean by DLCO
Hi
DLCO or TLCO (diffusing capacity or transfer factor of the lung for carbon monoxide (CO), is the extent to which oxygen passes from the air sacs of the lungs into the blood.
39% is a decrease, As a result of.
Decrease of total lung area, e.g. Restrictive lung condition.
Uneven spread of air in lungs, e.g. Emphysema.
As you appear to be in the moderate stage of Emphysema, I would not worry to much about the numbers.
No smoking
Sensible diet and exercise
Will slow down the progression of the condition.
Hi Carron69 - Just wanted to welcome you to the site. I see you are moderate copd. With an fev1, of 62, you should still be feeling quite well. Do you use inhalers? How are you feeling? The best thing you can do, is keep active. The less you do, the less you'll be able to do. We have some amazing people on here, with inspirational stories. Feel free to ask any questions you may have.😌 Ruby 🌷🌷🌷
Hiya
My reply went through before i finished! Hope you'll read the rest of it. My cell phone is acting up! 🌼🌼
O ok
Thank you I try to keep moving but I am finding it hard
My fev1 is 62 and so far, no problems. Do you use inhalers? 🌼🌼
I use nebuliser also have fosair tiotropium sorry for the spelling
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