Lone emphysema

[michael72]

I would like to know if there is anyone out there with primarily Emphysema, maybe diagnosed on CT scan, though you had "normal" spiro, or at least mild obstruction, despite how you felt. Whether you smoked or not, your age, and symptoms at the time. DLCO levels. Maybe you tested positive for Alpha 1?

Currently I have been short of breath, wheezing for several months. Chest xray normal, initial spiro was normal, but repeated and numbers went down. Supposed to have a Pulmo appt soon and will get full PFT's then. I have dyspnea all the time and a wheeze. Worse with activity. Quit smoking soon as it happened. That was several months ago. Feel like I am getting worse. Albuterol helps, but not much. Even talking makes things worse. I don't cough. Never have.

Appreciate any feedback. My Pulmo saw my spiro done by another doctor and though it was fine, but says DLCO needs to be done. My symptoms are bad, yet I am only "mild" on Spiro, but was normal a few months ago. Figure I may have lone Emphysema. Guess I will find out soon, in the meantime Iappreciate any info you can provide about your story.

Thanks,

Mike

[mmzetor]

hi mike I was diagnosed in 2011 age 36 as copd then spiro was around 69 % was getting breathless playing with the kids carrying things ect in 2013 lung collapsed while in hospital had 40% of right lung removed bulla emphysema was smoking then too had full lung test last November and dlco was 39 % they reckon spiro isn't to bad but its the dlco that makes me so breathless , im on seebri and seretide and nebuliser ,

[michael72 in reply to mmzetor]

So FEV1 was 69% in 2011? Did they ever test you for Alpha? Have you had a repeat Spiro since?

Back in 2011 did you just just have shortness of breath with activity? Or at rest. Thanks for answering my questions.

Mike

[mmzetor in reply to michael72]

yes tested for alpha was all clear yes spiro last November around 65 %

2011 was short of breath on exertion

[michael72 in reply to mmzetor]

That was the FEV1 i take it? I know there are many numbers.

[mmzetor in reply to michael72]

yes

[1968 in reply to mmzetor]

What is dlco?

[mmzetor in reply to 1968]

en.wikipedia.org/wiki/DLCO

[1968 in reply to mmzetor]

I'm 2013 my fev1% was 81%, my dlco was 61% however I have a dlco/va of 72% are these stats any good?

[mmzetor in reply to 1968]

they don't seem to bad not sure what dlco should really be

[Hidden in reply to mmzetor]

The higher the DLCO the better. That figure is showing how much of your lung function is working. My DLCO is 20% and my FEV1 is 32%.

Hope this helps.

[mmzetor in reply to 1968]

how you feeling now after the fall

[1968 in reply to mmzetor]

Sunday night I was up on the every hour, couldn't settle with the pain lol up at 6am to get ready for work, was in the shower for ages with hot water running over every joint. Monday has seen the pain move from left shoulder to all over my right side, struggle to lift a cuppa tea to my mouth, changing gears in the car is a chore and the pain goes on lol another few days I will be OK, I hate taking any form of medication, I was on paracetamol for two weeks with man flu, I fell better on the Saturday night then Sunday I was like a broken spiderman clambering onto to gutters and down pipers, back on pain killers lol.

[mmzetor in reply to 1968]

well hope the pain soon goes , did you see my bit on your post about the embrocation really is good stuff

[1968 in reply to mmzetor]

I'm just looking up my last 2 spriomitry test results to check out the figures, I was always told to ignore the other figures and go by the FEV 1%.

[mmzetor in reply to 1968]

gp was going to stop my seretide after I complained she sent me to see consultant who done full lung test then said it needed doubling and I asked him why she would stop it he said cos her spiromitry results say your not to bad and he said by them we couldn't make out why you so breathless but he said having seen the dlco we can see why your breathless and it tally up , after seeing ct scan and dlco he said he would class me as servere emphysema

[michael72 in reply to mmzetor]

May I ask, after you were first seen in 2011, between the time when you had the collapsed lung, how did you feel? Still with shortness of breath with activity or at rest too? Did you see any improvement on medication? Did they give you an inhaler? Did you use it? Did you still smoke?

Thanks for awnswering my questions. Really do appreciate it.

[mmzetor in reply to michael72]

between 2011 and lung collapsing I was given ventoin inhaler didn't do much good told doctor she said don't take it then , was short of breath with activity but if had a cold or chest infection it would be resting too, I was still smoking ,

[1968]

Have a read at my profile and posts.

[michael72 in reply to 1968]

Hi Mike,

I have been looking around before I became a member and I did read through some.

You don't seem to have symptoms, which is good. I do, used to smoke, gave it up back in Jan. Still I am breathless, at least I feel like it, and I wheeze. I guess it is also TLCO, the gas exchange in the lungs.

Mike

[Hidden]

Hi mike I'm an alpha 1 ZZ phenotype .bronchial asthmatic from birth, pleurisy at 15, pneumonia at 24, 2 X puemothorax , pleurectomy 32, uncountable chest infections from birth and still going , diagnosed copd at 38, diagnosed alpha 1 ZZ phenotype age 40 . Xx Sonia xx

[gaffers]

Hi I have pure emphysema, fev1 at 110% dlco 39% I was originally diagnosed with sarcoidosis but after CT scan shows a 60% loss of my lung surface area and the DLCO test I was told I have severe emphysema, no cough but I get really tired quite easily and SOB can be a problem, I have also been diagnosed with obstructive sleep apnea, sometimes I sleep very badly adding to my fatigue also my blood oxygen levels drop significantly on exertion,however my symptoms and spirometry have not changed in the last 3 years, Take care of yourself as best you can, and you can limit the effects of your condition.