Right let's talk honestly

I am glad got a clear diagnosis but honestly I know no one has a crystal ball.. question please with honest answers.

Consultant said mild emphasiuma but not had cat scsn just single bresth diffusion and asthma ok whst is the fev1 79% is that not moderate.

He has no issues with my sats dropping and coming back up. BLF nurse said said the same.

Both feel I have nothing to worry about???

Can you actual halt the progression or is that wishful thinking.

Most people on here appear to have progressed. I know I am asking same question as before but now i have diagnosis feel more equipped to ask questions relevant to my condition.

Need now to tell work so I can have support bit anxious about that but needs to be done.

Whst can I do about getting tired as I can just have a rest when I am at work that's been playing on my mind as off from work at moment due to low BP but was getting tired and job is physical.

Having involuntary intake of breath started this week, is that normal

Thing that's it for now.

Thank you in advance

[hypercat54]

Hi Emily I was diagnosed about the same level as you, and the doctor said don't worry about it as something else will get me first ie old age! I can't remember how old you are but I was 54 at diagnosis. x

[Hidden in reply to hypercat54]

Hi I am 57, I don't get how 79% is mild just really confused.

[hypercat54 in reply to Hidden]

I am told I am mild and my lung function is in the mid 70's. Some might say the top end of moderate but it is only figures. What is important is how you feel and whether you can get on with your life without too much anxiety.

You are not going to go from 79% to half that in a year or so you know. This could take 10 years, 20, or 50. Even so there are many on here with a lung function in their 20's who still lead a full and active life relatively speaking.

Live your life to the fullest you can despite your illness. This is what's important. x

[Hidden in reply to hypercat54]

Hi I intend to just had a series of questions, just for my benefit. I am a prober

[christina1947 in reply to Hidden]

Hi Emily just to tell you my lung function 2 years ago was 69 and the GP didn’t diagnose me with anything said see how you go and come back in 6 months for another test but I never went back. I take nac get plenty of exercise and don’t even think about my lungs seem to be doing fine I am 72 Take care xxx

[Hidden in reply to hypercat54]

Thank you for answering

[hypercat54 in reply to Hidden]

I am not sure I have really got through to you Emily? Have I? x

[Hidden in reply to hypercat54]

Hi why do you not think you got through to me, trust me you have got through, I am just asking questions. Not out of fear out of gaining knowledge

[Hidden in reply to hypercat54]

I have not found Any one on here who hasn't progressed like the 20 year 50 year will be long gone by then. So yes old age will get me. It's not about dying. I have come a long way since my first you may you may not have diagnosis. It's about quality of life, not being depend on Any one.

I know it's luck how if you progress, just not found anyone who hasn't progressed. So with that said I am confused how I will progress as part of aging process. And no one has answered that. I am not taking the word of consultants, but the word of people on here.

My fev1 has gone from 62 to 79. But still don't understand that.

[soppysokes in reply to Hidden]

From what you've posted before and your current position along with tests and the consultants opinion, it really seems you are in reasonable shape! Lung function naturally reduces year on year in a 'healthy' specimen, but by taking all the advice re smoking,fitness levels,activity levels etc etc it is possible to hold back somewhat this natural process. With an underlying lung problem, of which yours seems to be still functioning quite well from what has been said ,you probably ok for a long while yet! Could it be more the anxiety of knowing your situation causing you more problems than your actual condition now?

[Hidden in reply to soppysokes]

No it's not anxiety only of knowing my situation it's trying to educate myself with my situation.

I asked about keeping engery up st work that I feel is a problem.solving question

My sats drop then rise got that ticked off by BLF nurse as was concerned it would cause damage hence started to get a bit reluctant to do the excercise I was doing.

Having read people's responses everyone on here has periods of anxiety,

My sudden involuntary intake of breath was asking if that's normal with this condition.

[hypercat54 in reply to Hidden]

To take your questions one by one. To keep maximum energy lead a healthy lifestyle and exercise. You might need a bit more rest than normal but that's fine. It is normal for stats to drop a bit while you are exercising, but it would only be a problem if they drop below around the late 80's and stay there for hours. You shouldn't get that with 79% lung function or anywhere near it. That would normally only be the preserve for those with a lot lower lung function.

We all take involuntary breaths and that is totally normal. x

[Lemon7 in reply to Hidden]

Hi Emily. Like you recent mild diagnosis. Like you I am not afraid of dying soon but of deteriorating quickly, impacting my quality of life. However if you think about it you can worry about something that hasn't happened yet and ruin the day today! I am going to do everything in my power, no smoking, healthy diet, exercise and be as pro active dealing with this as I can. Anyone could wake up tomorrow, find a lump etc be diagnosed with something worse. I have recently had the occasional involuntary breath, just assume this is part of condition, don't know for sure. My fev is 121% of what's predicted for my age, height etc. My dr thinks it's because I am so active and swim etc . That's partly why I'm bothered about deteriorating quick, because I am so active, gardening etc. However I'm not going to waste a day worrying any more. I am fev1 121% but still get symptoms, inclines stairs breathlessness etc but nothing severe. I have not had CT scan, I've heard some people are diagnosed mild but on being given a scan moderate damage can be viewed. All we can do is give ourselves the best chance of not getting worse quickly, dont smoke, avoid fumes, harsh cleaning products etc. Get quick treatment for chest infections etc. All the very best to you.

[Shortlungs]

Enjoy your holiday you deserve it

[Hidden in reply to Shortlungs]

Thank you

[Skatergirl1]

Hi Emily, I was diagnosed as severe last year, fev1 42%. And since I stopped smoking and took up ice skating again I am in control of my breathing most of the time, very rarely need to use my Ventolin and stopped taking my daily inhaler. For me just getting on with life has helped I don't give much daily thought to my condition and just live my life as normal, I listen to my body and if I need to rest so be it. Xx

[christina1947]

Hi Emily you said you have low BP what do you call low. Just interested xxx

[Hidden in reply to christina1947]

90/40 goes up then back down bottom reading should be no less than 60

[Hidden in reply to Hidden]

Sorry to hear that you are off work with low BP Emily. Was this on the advice of your doctor or through self monitoring?

[Hidden in reply to Hidden]

No Dr attended hospital as check at home thought machine was wrong. Been checked twice a week still a bit low. Hospital arranging for 24 hour heart BP check this month. If not one thing it's another, but oh well

[Hidden in reply to Hidden]

It does seem to be 'if not one thing it's another'. It makes me wonder what you will do with yourself if you ever found yourself fully fit! Just keep in seeking I suppose. Try not to worry so much, you've been told time and time again that you are fine and being well looked after. Try seeking knowledge in some none medical areas for a change. 😉x

[Hidden in reply to Hidden]

I am not worried in the least with my BP or heart just something that needs to be sorted tbf. Sorry if indicating I am worried. Dear me. But thanks for your concern

[Hidden in reply to Hidden]

Whst would I do, just whst I am doing Monday heading to Spain with daughter.

[Hidden in reply to Hidden]

I was concerned about you Emily having followed your story from when you first joined, as I think a lot of others have been. However, a trip to Spain with your daughter sounds a much better option than work, that you said you were considering. 🙂

[Daisy55]

There are pulmonary rehab classes you can go to where they assess you constantly as you exercise , ask your Gp / medical team . My husband has 30% lung function and is stable at present , it’s all about recovery whilst active , if your stats recover after some exercise it’s ok . At 79% lung function you are doing ok . The pulmonary rehab would help you I am sure as physios will assess and it would give you confidence to manage your condition too .

[Superzob]

The problem with these figures is that they tend to be compared to the average (100%) rather than the normal range (80-120%). You are just below the normal range, so I wouldn't worry, though it would be nice if we could all be at the top of the range; but then the average wouldn't be where it is, would it?!