fed up with fev1 rating

[gaffers]

Had my appointment with pulmonary nurse today, and again had to explain that I had non obstructive copd.

ct scan shows considerable damage (60% loss of lung surface area) dlco (gas exchange) 39% classed as severe gold stage 4.

fev 1= 105% expected (no obstruction)

Almost impossible to find any meaningful information, as everything is about air flow restriction.

All the information is about normal copd there is no help available for those people like me and I am not alone in this.

seemingly the term copd gets in the way I have lost the "O" in my c pd and looking for it every year is not helpful

But all the help and advice is based on how much obstruction you have and i have none.

it feels like being in a place where all the signposts have been removed, the majority of health professionals have never heard of a case like mine and are unable to tell my anything except what normally applies to people with obstructed breathing.

Ido have symptoms if i walk up hill i am like a fish out of water gasping for breath,

i cannot walk quickly at all and i cannot walk and talk at the same time,

I lost my job as an aerospace engineer due to my condition.

I haven't even tried to claim pip if the doctors have trouble with my condition then the cynical people at the d.w.p certainly wont, they also will judge my health by my spirometry results which for me are at best meaningless

FEV1 is not the be all and end all with lung disease.

I do not feel that measuring fev1 every year gives any indication as to weather my condition is deteriorating or not, but this is what is recommended and so blindly every year they test it.

when I attended PR my oxygen levels after exercise were considerably lower than those with obvious symptoms of restriction who were really struggling.

I feel that the umbrella term copd gets in the way I do not have copd I have emphysema and in my case they are not related!

[casper99]

Hi, you shouldn't let your Fev1 stop you claiming PIP because it's not the diagnosis that get's you it.

You have proof of your low DCLO rate and even better, proof of how low your SATs drop on exertion and that's what you'll be claiming it for.

Get print outs of both readings and put a claim in. Your entitled to it. xx

[stone-UK]

Hi

I have emphysema which is a obstructive lung condition, the other is restrictive lung condition.

differencebetween.com/diffe...

PIP is how you are affected by the condition rather than the condition it self. Claim.

gov.uk/pip

[shadow4me]

Totally agree with you we are all different but thrown into one bucket ?and mostly stuck on the same treatment I hope you find a answer

[soulsaver]

Fev1 at 105% predicted does not necessarily mean no obstruction. What was your actual (not predicted) FEV1/FVC ratio?

[gaffers in reply to soulsaver]

Hi soulsaver

I suppose there is technically some obstruction lung volume 108% fev 105%

but then there is the argument of precision of readings as a 3% difference is as near to no obstruction as can be measured

[soulsaver in reply to gaffers]

That's not how it works out.

If you can provide the result for each (FVC in litres & FEV1 in litres, or a pic/scan of the report) I can show you how to do the calculation and maybe explain in lay terms what it means.

Best wishes

[Fennella02]

I'm confused as to how you have a diagnosis of COPD when you don't have obstruction? My consultant tells me that he is treating me as though I have COPD but is quick to add that COPD is not what I have. I have obstruction and restriction as a result of lupus inflammation and it can be hard to pick the results apart. Is my air trapping because of the obstructed airways or because I haven't the respiratory strength push out the air? How did you get your COPD diagnosis?

[gaffers in reply to Fennella02]

hi clareb67 my diagnoses was from ct scan and full spirometry and gas exchange test.

[zorro1]

Hi gaffers, I really sympathise. Last year i found from a genetic test that I had severe alpha 1 antitrypsin deficiency which can lead to lung and liver damage. My gp practice did spirometry which showed Fev1 and Fvc percentages in 140s. They really did not want to refer me to an Alpha 1 specialist clinic as with these figures Im healthier than most people my age. When eventually I had my gas transfer levels tested at the local hospital my dlco was 69% and kco 64%. Because I now see an alpha 1 specialist I am being dealt with by someone who understands the importance of the gas diffusion element and will keep an eye on things. I get breathless on hills and exertion even with my relatively good gas transfer figures so I can imagine how awful it must be for you. Shame that most of the medical profession are so ignorant of this issue.