Spyrometry results

[Eco1]

Just a quick question. If medication is taken regularly prior to spyrometry testing, would this not affect the outcome of the results and thus potentially provide an innacurate diagnosis, in terms of severity?

[2greys]

Yes it probably does. But it does not improve CT scan results.

12 months ago I was diagnosed as severe with an fev1 37%, CT Scan showed that 67% of my lungs had been destroyed, leaving me with 33% left.

9 months later, after taking all my meds religiously and intense physical exercise and breathing exercises my fev1 had increased dramatically to 50% and my TLCO (gas exchange) had doubled. But CT Scans show the same I still only have 33% of my lungs left, they are just working overtime/very efficiently as if I had 50%. My diagnosis remains at the severe level though.

My improvement is probably down to both meds and exercise. Without my meds I would not have been able to exercise at the level of intensity I am doing or to keep working full-time. A bit like the chicken & egg which came first.

[Eco1 in reply to 2greys]

Hi. Thanks for your reply 2greys. The reason I am asking is that my PIP claim has been turned down since the change from DLA which I was receiving at the highest level. As a result, my car has now gone and I have to return my Blue Badge.

My concern is that if the medication taken blurs the actual diagnosis, you can never be sure at what level of COPD you actually are and the results will not assist you, if you decide to reclaim for PIP or a Blue Badge.

Alternatimely, I wait until I get to the position whereby my medication is no longer as effective and I am therefore housebound and no longer require a car.

[2greys in reply to Eco1]

Your diagnosis is not just based on Spirometry tests alone, if that were the case then I would be classed as moderate but I am not, it is based on diagnosis from my many CT Scans. I have asked this question from my consultant. If I somehow achieved an fev1 of 100% I would still be classed as severe, because of the amount of destruction of my lungs.

[Eco1 in reply to 2greys]

OK. That makes sense. However my recent CT scan states "Both lungs are diffusely emphysematous. There is apical lung fibrosis. There is small volume mediastinal lymphadenopathy but not very significant. As you can see, this scan results does not give an indication to the severity of my Emphsema so would not really be evidence to support any claim.

[Hidden]

Hi sorry to hear that. The criteria for PIP is not what your illness is but how it affects you. The questions on the forms are worded in a very specific way to fit in with certain criteria. I hope you got help in filling this in from either the CAB or disability organisation etc.

You also need to appeal as many decisions are overturned then. Good luck with it.

[Eco1 in reply to Hidden]

Hi lilaclil. Thank you for your reply.

I am too late to appeal against the PIP decision as it was made last October following a home assessment. The problem is on meeting me you would not know there was a problem. With the help of my medication, I am generally pretty good unless I have an infection. My symptoms become noticeable when I am engaged in an activity. Even bending down to clean a cupboard gets me breathless and I can't even consider climbing a hill.

As for the 20 metre ruling g, I can do it most days but not when I have a chest infection. I was just hoping that the spyrometry and CT scan results would give me the evidence to support my claI'm.

[O2Trees in reply to Eco1]

Hi Eco1 - just a quick thought. Getting breathless bending down could possibly be due to acid reflux aspirating into your airways causing a kind of asthma effect (many with copd have reflux). Try squatting down for a few days to pick things up and see if that makes any difference - nothing to lose by trying

[Eco1 in reply to O2Trees]

Thanks O2Trees for your reply.

I already have Asthma and have been troubled with indigestion and heartburn for quite some time. I have often wondered if there is a link but never considered it when I have been bebeing / kneeling. It'seems something worth considering.

Thank you.

[O2Trees in reply to Eco1]

Talk to your GP Eco - untreated reflux makes copd worse. Also you can make lifestyle changes which should help - try sleeping on your left hand side (entrance to stomach is slightly down on the right) so gravity helps keep stomach contents in the stomach. And prop yourself up on pillows. Eat a diet high in veg and whole foods. Try to identify your food triggers and avoid them. Common ones are tomatoes, strong spices, fatty foods, garlic, onions, citrous fruit, alcohol, caffeine and chocolate But everyone's different which is why its important to work out which foods affect you.

[Eco1 in reply to O2Trees]

Good advice. Thank you, although why is it always the food that you like that needs to be cut out?

I think I need to have some discussions with my Dr, although I feel as though I am pestering him all of the time lately.

[O2Trees in reply to Eco1]

It sounds like you need those conversations with your GP while you get stabilised. Once you are you won't need the doc so much, so don't feel bad about it.

[Hidden]

I believe you can reapply after 6 months so my advice is to try again. Gather any written evidence you can and take it with you. They have changed the rules to get the higher rate PIP which entitles you to a mobility car from 50 yards to 20. If you answer yes to the question can you more often than not walk 20 yards comfortably then you won't get the high rate. If you answer no then you might.

[Eco1 in reply to Hidden]

It is all very specific isn't it lilaclil? As many of us will know, often no two days are the same and you may be able to walk to your car from your home but can you walk to where you need to go when you have parked your car. Where I live, most of the town car parks are situated at either end of a hill, resulting in disabled parking being the only means of going to the town. Even the hospital is situated on a hill!

[2greys]

You are going to have to discuss this with your doctor, no one here can help with telling you what stage you are at. Benefits are an area that I have never had to deal with. I am self employed so most benefits are denied to me. I have never claimed a penny from the state.

Yet another reason to carry on working.

[Hidden in reply to 2greys]

I understand what you are saying 2greys but I always feel guilty whenever I hear someone saying they have never claimed from the state. I have had too on occasion but due to no fault of my own.

I don't know why I feel guilty when I have worked nearly all my life from the age of 15? Am I starting to believe the bumph and rubbish I hear all round me?

[2greys in reply to Hidden]

Not taking a poke at anyone by saying it, just the reality of basically being denied benefits when self employed and not married. Sharon and I have been together 30 years and neither of us want to marry, had we done so I might have been eligible for some benefits. Just the way it is, as a result I have zero experience of making any claim. No offense intended to anyone.

[Hidden in reply to 2greys]

No offence taken 2greys . It's just my reaction when anyone even mentions benefits x

[Eco1 in reply to 2greys]

The PIP is not so much the issue as the Blue Badge is for me, although the PIP would assist me with paying for taxis when I canot park near to where I need to go.

In respect of the stage I am at, I have arranged to collect my notes from the Dr. However, as you have explained, I am not sure my test results can give a true reflection if prescribed medication affects the outcome.

Thank you for your advice though.

[O2Trees]

Not sure if anyone's said this so apologies if so. You need to fill in your form as to how you are on your WORST days. If you are being assessed in person you could try leaving off your meds so that you are gasping when you see them. Ok I can't officially recommend that and its probably not ideal health wise but that's what I would do Remember they are like;y to be watching as you come in from the car park so lots of rests should be taken.

[Eco1 in reply to O2Trees]

My last assessment was completed at home and the assessor actually commented as she entered my home, that I was out of breath. When it came down to how far I could walk, she asked if I could cross the road outside my house which she estimated was about 20 metres. I truthfully stated that I could on a good day but if my chest was bad, I would not contemplate going out.

As for taking my medication, I am not sure that would have much affect as many of mine are long acting and I wouldn't want to take the chance.

Thanks for the suggestion though.

[Hidden in reply to Eco1]

Hi that's why you didn't get the higher rate PIP. Tell them you can't cross the road most times if this is the truth. Don't forget describe your worst day not a good one.