non obtructive emphysema info request

[gaffers]

I have been diagnosed with non obstructive emphysema my specialist says that my gas transfer is at 40% and that i have lost 60% of my lung surface area but i have no obstruction spectrometry @ 98% what is my prognosis I cannot find any info on non obstructive emphysema please help

[Hidden]

If you type into google 'Non obstructive emphysema you will find a few links come up. Here is one:

sciencedirect.com/science/a...

Basically it means you don't have obstruction of airways but you do have lung damage.

[gaffers]

I found this article before and the patient died within 5 years, there are very few articles and not very informative, if I had an fev of 40% and a loss of 60% lung function I would find all the info I wish, but as I have a gas transfer of 40% and a loss of 60% lung surface area I can find no real help in regard to a prognosis or treatment , i don't know what to expect and I am struggling to do my job and I am the sole carer for my disabled wife I really need some info if anyone can help

[Hidden]

Hi

Please give the Helpline a call - 03000 030 555 - let's see what we can do to clarify and explain what's going on.

Thanks

Mark

[gaffers in reply to Hidden]

Hi I phoned your help line and the nurse was very kind, I am left with emphysema as a result of sarcoidosis this is why my fev rates are normal but I am afraid that my condition is unusual and that there are no black or white answers. There is no real way to say how long I have left or what I should do, normal conditions do not apply, however apart from the fatigue I am reasonably healthy and I feel the nurse is right and that I should concentrate on what I am still able to do, I might have 5 years or I might have 20 nobody seems to know much about it.From reading your forum many people are worse off than I am, I feel I steer into an unknown future but there are no facts to guide me thanks for your help gaffers

[Hidden]

Dear gaffers

I was diagnosed with emphysema with 50% DLCO, I was in a bad way initially with lung infection and shadow on the lung. Time passed I recovered from the lung infection and the shadow is no longer present.

I am still going strong after near on 9 years, I intend to continue for another 20 years. My condition is now stable. I acknowledege you are struggle to do your job but you are still doing it, this would suggest you are also stable. You may have to stop work but that doesn't mean you will go down hill, just that you will have more time to keep yourself in good condition, relax, take things easier and have enough energy and puff to keep some exercise going. Perhaps, initially consider reducing your hours at work if you finding things difficult.

The facts to guide you are there, your consultant can give you some answers but hopefully no consultants now will give anyone with a lung condition an approximation of how long we have left. Even when we are at our worst with a lung infection we can still recover and achieve a stable condition again.

There is much we can do to keep ourselves stable. Just follow the recommendations of living with a lung condition, this will help you no end.

blf.org.uk/Page/Living-with...

If you can access a pulmonary rehabilitation programme this will also be a great help in managing your symptoms, condition and maintaining a reasonably good quality of life.

I think for many of us when first diagnosed we think the worst, but actually as the years pass, we realise we are living with a lung condition and still able to enjoy life, death is not round the corner, we realise we have more living to do.

Do take your medicines as prescribed, looking after yourself well, and try for that PR course. Unsure if you smoke, but to improve your chances of living a long life, don't smoke or passive smoke,

Wishing you easy breathing and remaining stable.