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!