Hi everyone! I had my first visit to a respiratory specialist today and I'm even more confused. I thought staging was based on PFT results. With an FEV1/FVC % of less than .70 and an FEV1 95% predicted I thought pointed to mild emphysema. Though when the specialist put up the CT scans from May 2013 and a recent chest x ray he pointed out the upper right lobe loss of lung tissue (holes) and not so bad left upper lobe damage and said that classed me as having moderate emphysema. He also said the "mechanics" of my airways were functioning quite well thus the not so bad PFT results. Though the lung volumes VC and TLC were over predicted % so in keeping with the obvious damage as seen on scan/x ray. He said the airways lose their elasticity and tend to fold in and constrict. He said mine were open. I assumed that was a bonus?
I was told inhalers were not appropriate at this point and there was nothing he could do regarding replacing lost lung tissue. He suggested I continue my exercise routine and the most significant benefit was the fact that I stopped smoking. I said I wasnt sure if I really wanted to know but how long could I expect to be leading a "normal" life as I do now. He told me this wouldnt neccesarily shorten my life but would eventually impact on my quality of life. That with the natural decrease in lung function as we age plus the baseline damage already on board that in 5 / 10 years things may change. I'm 57 now.
As I have a family history of emphysema he's ordered a blood test for alpha 1 def' but said that usually shows in the lower lobes. For those who do have this gene he mentioned research or trials currently being done in the US through IV and / or nebuliser treatments. If you are interested perhaps you could find more details online.
I'm waffling along here, sorry! I'm wondering if anyone else has been in this position with damage seen on scans and x rays but with a normal FEV1? I do it tough on inclines but in daily activities I manage ok and push myself exercising. My Dad lived with emphysema for 20 years and coped quite well for all but the last couple of years of his life. My brother also has emphysema and like many he benefits from medications spiriva and ventolin etc. I know we are all individuals and unlike other diseases this one can present so differently from one person to another. I think I'm feeling out on a limb. Warmest wishes to all Suz xx