Anyone with "normal" FEV1 staged at moderate emphysema?

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

9 Replies

  • Good Morning - No wonder you feel confused. My husband has severe COPD with a FEV of 27% and actually he has never had a scan! He was diagnosed about ten maybe twelve years ago now. I cant really help you but would suggest you try the BLF helpline and speak to the nurses - they maybe able to throw some light on it. The very best of luck, TAD xx

  • Hi Tad, thanks for your reply. I have been scanning the forum looking for answers over the past few months and have read several of your comments. All of them caring and uplifting. Your husband is a lucky man to have such loving support! Suz x

  • Suz - I tell him everyday!!!! Take care, xxx

  • Hi Suz nice to meet you.Its all baffling sometimes,personally i dont think an xray and ct can possible be compared,had you have had another scan that would be different.My daughter had xray and doctor said she had pulmonary fibrosis we were all beside ourselves with worry,then she had a ct,turns out not fibrosis at all! I would gravitate to the good lft results :) keep up the exercising forever now,keeping fit is just so important to us all.You've stopped the ciggies which is a biggie and eat a healthy diet.Get on with living a full enjoyable life.They told me 15 years ago that I would be bedridden in 5 years,well im still tripping the light fantastic :).

    As Tadaw suggests give the BLF a call and see what they have to say they are such lovely helpful people.Takecare now be happy. :) Janexx

  • Hi Jane. How wonderful that you are "tripping the light fantastic" Your tenacity and determination have proved them wrong 15 years down the track. You give me hope. I had the ct scan in may 2013 for cancer (not lung related) chest/abdomen/pelvis. That was when I became aware of the emphysema. The team of dr's looking after me said the scan was "good" I guess it was as far as any possible cancer spread but no one mentioned the emphysema till the day after surgery and the anesthetist came to my room (bless him) and suggested I never have another cigarette. Which I never have....and never intend to. I have a hatred of them now. Think back to when I thought of them as my best friend. Dumb! Dumb! Dumb! The specialist yesterday showed me that scan (chest) result on his screen and explained what was what so I guess there is no getting away with just grasping the much more impressive LFT results! (smile) Im so pleased your daughter didnt have PF. Hugs xx

  • hi suz act scan is more reliable than spirometry with emphysema I am classed as severe but my fev is normal 'I breathe fine but oxygen/C02 exchange levels 39% I dont cough but fatigue and shotnes of breath can be a problem.

  • Hi there Gaffers! Your situation is very much like mine with you being one stage ahead. Our spirometry results are similar and my DLCO is 47% What are your lung volumes? Up to this point I'm blessed with minimal fatigue and though I do huff and puff doing some chores and brisk walking I wouldnt refer to it as being breathless and I recover quickly. There isnt any part of my daily routine that I wouldnt do because of fear of it making me breathless. I was breathless for several weeks following a chest infection but thankfully that passed. I had an oximeter on my finger just before a FOT breathing test yesterday and it showed 96% (at rest) I have no idea what the reading would be when Im exercising and no one suggested I should obtain one and check. All that was said was as the cardiologist had cleared me to exercise I should as much as possible. You can probably tell Im still trying to get my head around this and also in gauging how bad everything is or isnt. I guess its like pain levels everyone feels pain differently. Have you picked up any tips in how we can best hope to improve our lot? I know we cant replace our lung tissue nor heal the areas of our lungs where gas exchange occurs but I think the plan is to exercise to the best of our ability so our muscles need less oxygen. This is all so weird from personal experience of family with this disease I am just so different or maybe they to were like this before the disease progressed. I look healthy, I don't wheeze, I rarely cough and until Im put under physical pressure I breath "normally" yet they tell me I have a chonic disease with great holes in my lungs. Indeed most of the upper right lobe is no more! I've just looked at a few of your older posts Gaffers I hope you have less fatigue and are settled into a comfortable routine caring for your wife and that she is doing well. Suz x

  • It does appear were in the same boat, there is little information about the progression of pure emphysema, it is unusual to not have bronchitis or other obstructive issues, my fev1 is 110% expected, i used to be a singer which may help and have no signs of obstruction,

    the doctors think that my lung condition is possibly a result of sarcoidosis or similar ILD.

    I find the most important thing is to keep up morale,were in it for the long haul there is no getting better so keep fit, eat well,and enjoy yourself as much as possible within the limitations of your health,Don't let the illness define who you are or how you live your life take control when you can and find a way to enjoy the times when you have no choice.

  • Emphysema is very individual. I am Stage 4. FEv1 of about 24%. I started my 2nd PR course recently and yesterday took the first exercises on the machines even though I had a slight infection. The trainer asked me to try and do 10 minutes on 3 machines with a small rest in between. Machine one was a cycling type. Done 10 minutes ( with O2 on 1/min ) got a bit puffed. Same on machine 2 which was like cycling using hands/arms and machine 3 was a treadmill. 10 minutes on there. It's very rare I walk for 10 minutes normally without stopping for a break so I even surprised myself there ! The chap says it's probably because it's a constant environment at a gym centre.

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