Looking for forty something's with maybe mild COPD, minimal small airways disease or? I know there are a couple on here.

[patrickd72]

But there has to be more. Or maybe you were diagnosed in your early, mid 40's and are older now. Just a dearth of info on the web and in general for people around my age (43). Even on these websites, including some in America. Frustrating. I have posted here before and I am dealing with some SOB, hyperinflation. Most people get diagnosed when further along the continuum, or older. Myself I am in the midst of getting worked up. No official dx yet.

[1968]

I was diagnosed in 2010 with very mild emphysema, after ct scan I was diagnosed with bullous emphysema, very bad in right lung and some in left lung. 5 years on very little change, still not on medication and changed my life around after being diagnosed, no more smoking.

[patrickd72 in reply to 1968]

I recall reading some of your posts. I am symptomatic, SOB, on Spiriva. More tests coming up. So far some abnormalities, but the Pulmo does not think much of it, despite a lot of air in my lungs and I just feel worse. I never smoked much, but had mild allergic asthma, so that did not help. Just not a lot of info out there with people in their 40's. At least that I can find.

[DaleyWaley]

Hello Patrick D. I was born in 66, and I was diagnosed with small airways disease (COPD, although never stated as such) when I was 47, although I wasn't told until 6 months after the test! I have been on a variety of treatments, such as Spiriva, Fostair, Seretide, Prednisolone and Relvar Ellipta. None of these seems to have any positive effects on my breathlessness (which is rarely so bad that I have the need to panic).

Maybe it's compicated by the fact that I also have ankylosing spondylitis which has severely restricted any movement of my ribcage ( I do self-inject Humira fortnightly). As others have mentioned on this site, it is not uncommon to have an accelerated pulse rate, even with the slightest exertion (mine is rarely below around 100bpm at rest, and quickly goes beyond 120bpm when climbing a flight of stairs, e.g.).

It has been mooted that I have probably got obliterative bronchiolitis, and to be honest, there are days when the chest pain is not really helped at all by the Arcoxia 120mg tablets. I have also lost some hearing (now have aids), and the discomfort in my chest caused by speaking (that prevents me from doing my job) is now about to lead to a formal review with my employers (in teaching), and they will definitely be terminating my teaching career.

One of the main problems I have now is trying to convince Teachers' Pensions that I qualify for ill-health retirement; they don't seem to believe that people can be "that" ill sub-50. The problem with a lung condition is that people can't "see" that you are ill, which is why it is even more important to do your best to get on with your life, and retain some mobility for as long as you can. In some ways, I am looking forward to the next stage in my life; I know that the time has come for me not to be working, which incidentally, I have battled against for 18 months now.

I wish you all the best. By the way, on a positive note, my FEV1/FVC has remained realtively stable for a couple of years; I have just lost a little in the lung capacity overall. My oxygen SATS are still good (97%), but I have recently dicoverd that this is quite normal with obliterative bronchiolitis. As time goes by, you will probably find that walking long distances or climbing up moderate slopes will cause your breathessness to be more noticeable, but provided you don't overdo it, you should be able to recover in a reasonable timescale, ready for the next hurdle to climb.

Daley Waley

[Hidden in reply to DaleyWaley]

Daley, I hope you don't mind me jumping in, but my consultant believes I have bronchiolitls obliterans. What are they doing/have they done to diagnose you?

[patrickd72]

Daley,

As of now, I have been diagnosed with dyspnea. In his note, he mentioned minimal small airways disease and hyperinflation. Well I feel anything but minimal. Been dealing with this since Jan and it is just within the past 3 weeks I got worse. The pulse rate is interesting. Mine at rest is much higher than it used to be, and barely anything I do sends it up. Sitting to standing, walking. My slide this year pretty pronounced. My SOB and exercise intolerance, especially as of late are bad, yet my Pulm doesn't seem convinced much is happening. Hope to have more answers soon.

[onamission]

I was diagnosed 11 years ago aged 42

[patrickd72 in reply to onamission]

Care to share more about your history. Smoker, non smoker. PFT's. Where you are now? Feel free to message me if you want to keep private.

Thanks! It would be a big help to me!

[onamission in reply to patrickd72]

Yes I'm a ex smoker the problems I face now my lungs are deteriorating I have lower back problems so I can't exercise on land due to the impact and my breathing is much worse due to this. I had many chest infections over the past two years this has also set me back and as we all know we never get back to where we were before a chest infection.

I have now had my meds changed and taking Spiriva that is used to protect us from infections and it seems to be working. I have emergency meds at home but refuse to take my steroids due to a blood condition.

So that's me early 50's with a lung capacity of 89 year old

[pattylusk in reply to onamission]

@ona misson I don`t think Spiriva is the med u r talking about. My understanding is that it is a powdered inhalent of steroids that tend to expand your airways.

[onamission in reply to pattylusk]

2013 I had my lung function test with a nurse practitioner who teaches in COPD she saw how many flair up's / chest infections I had 2011-2012 she put me on the powder Spiriva and said they found this helped preventing chest infections from 2013 I can count on one hand how many chest infections / flair ups I have had. I'm not sure if this is mind over matter, have I been lucky not sure all I know that pre 2013 I was on meds every month for 2 years

[pattylusk in reply to onamission]

emergency supply of antibiotics is what u need at home. Maybe your Dr. office nurse could help you sort everything out. It is too easy to make a mistake. Take care. P.S. every wintert I get colds and flu with infections and so far I haven`t gotten worse. Keep your spirtits up-some gloomy doctors scare you to death. I was told one cold and I would be dead. Good thing I did not believe him as I am just now getting over a doozy of a cold. Hee Hee iam still a

kicking.

[frose]

Diagnosed at around 42 (now 55) but suspect I'd had it a lot longer. Slow but sure decline until 51 when swine flu knocked me for six but also stopped me smoking. Since then gradual but amazing improvement (FEV1 33% - 73%!). Using ventolin, spiriva and duoresp spiromax with emergency abs and steroids. so long as I don't get ill, it's OK! But colds send me into the fear zone.

[patrickd72 in reply to frose]

So you smoke for another 9 years after being diagnosed? No judgement of course. And diagnosed with small airway disease? So FEV1 went back up? How did you do up until you got the flu?

Thanks for answering my questions.

Patrick

[frose in reply to patrickd72]

Yes, afraid so! It sounds daft now but, at the time, COPD was just a meaningless label to me and, even from being a child, I'd always had the cough from hell and chest problems, so I didn't really believe that smoking was the cause of many of my problems. Plus when I was diagnosed at my GP surgery they said there's no need to worry, this often happens with asthmatics - I took it at face value. After swine flu I gained a consultant who very quickly rectified my views! As for my improvement I think not smoking is the biggest factor; a healthy diet; keep moving, however little that might be, and avoiding colds and flu! Easier said than done of course! I've also learned to pace myself as tiredness leads to illness (for me) but I still work full time and lead a full life. my lung conditions are listed on my profile.

[pattylusk in reply to frose]

2frose Patrick is too harsh.

[frose in reply to pattylusk]

That's sweet of you, thank you, but it's OK, I don't think Patrick meant it unpleasantly and, looking back, even I'm amazed by my stupidity! Still, the wisdom of hindsight is a wonderful thing eh!

[patrickd72]

I wasn't going to say anything regarding that comment. And I still will not. That is why I mentioned no judgement, because there was not. I was and am looking for information.

[sickwick]

Hi patrickd72...I am a 42 yr old female in the US and just found out by accident from an unrelated heart CT scan (checking for plaque in the arteries) that I have moderate emphysema in both lungs, upper and lower. I smoked for 20 years, 1 pack a day and quit five years ago. I run 5K three times a week and Crossfit five days per week. I have NO symptoms currently, except a nagging feeling that other people I exercise with can run a bit faster and do more exercise than me before they get too winded. As a child I grew up with second hand smoke and had a terrible cough until I moved out of the house...even though I smoked too. I have my second pulmonary visit this Friday, where I'll receive the complete round of breathing tests...no idea what it means, but I'll be there for awhile. My first visit I was told that my FEV1 was 86%...again, no idea what that really means besides mild COPD. I'm a complete anxious mess because this is the first time I've had to deal with any health problems, but I'm hopeful that I will be around to raise my three kids...my youngest is four! I will let you know, if you're interested, what my pulmonologist has to say.

[patrickd72 in reply to sickwick]

I have a FEV over 100%. But I have a lot of air trapping, so stale air at rest which I have to overcome when I exercise which makes things difficult I guess. The relationship between hyperinflation and what they call dynamic hyperinflation is not always well understood. I have SOB too. Count yourself lucky. I have not had a CT, only full PFT's. Which includes lung volumes, how I found out about the air trapping.

I am on Spiriva and Dulera. Whereas before I was only on Albuterol as needed. Been frustrating. I was a modest smoker but had some allergic asthma, stupid of me and I am paying a heavy price. As of now I have no official diagnosis. I am seeing a new Pulm, my last one I felt like discounted my symptoms and I need a fresh set of eyes on me.

Let me know how it goes.

P

[patrickd72]

Numbers are just that. Count yourself lucky you have no symptoms. You smoked, so if others are faster well that's ok. Id do all I can if I were you to protect your lungs at all costs. Pollution, fumes, you name it. You have a good FEV1, which is how they stage COPD. Both you and I, if we are lucky, will progress along a normal path of decline. But the damage has been done. Like I said, you have no symptoms, focus on that and less on the PFt's, and the CT. I wanted a CT scan, but now not sure. Won't change how I feel or the management. A couple months ago I was like you, I had SOB, but still did most everything I wanted. But got worse a month ago and now I am much slower. Not trying to freak you out, everyone is different I have learned.

Be well,

P

[Hidden]

I don't have COPD but was diagnosed with asthma and bronchiectasis in my early 30s. Now they think I've have bronchiolitis obliterans. I agree its hard to get info and a lot can be scary!

[Hidden]

Just reading through your comments - definitely request a CT scan. Isn't air trapping a result of small airway disease? I know on my CT scan I have a mosaic attenuation pattern which is consistent with airtrapping but my FEV1 is 55%

[patrickd72 in reply to Hidden]

Yes, air trapping can be due to damage to the small airways, or the medium/large ones. But my airway resistance is normal. Most of the time full PFT's, which I had, and which shows small airway issues, is enough. A CT scan can be helpful, if the diagnosis is in doubt. I am going to see a new Pulm, so I will see what he says.

Best of luck.

P

[Fennella02]

Hi Patrick. I am 48 and have never smoked. I have had mildish lupus for 25 years which recently seems to be involving my lungs both directly and indirectly. The lupus causes lung inflammation and recurrent pleurisy whilst the muscle weakness from the disease and the drugs mean that I breathe inefficiently and also inhale/choke on food, fluid and even saliva which has filled areas of my lungs with debris and narrowed my small airways (Bronchiolitis).

My consultant treats me for copd/emphysema (Anoro inhaler) whilst admitting that I have neither. He is unsure about an asthma link but I do benefit from Ventolin and other asthma inhalers. The muscle weakness is the worst. My FEV1 is 78% which is considered normal (that's what I'm told, anyway) but my tests for strength are less than half of what they should be despite pushing myself very hard aerobically on a daily basis.

Not having a straightforward diagnosis means that addressing any problems is never straightforward. My GP refers me back to my resp consultant in a blink who is always keen to pile the blame onto the lupus and thus I am forwarded to my Rheumatologist and so the cycle continues . . . I hope you get some answers although I have learnt over the past couple of years to accept the symptoms and treatment without the definitive diagnosis. Best wishes. Clare x

[patrickd72 in reply to Fennella02]

I agree. Having a diagnosis will not exactly change anything. But knowing what is going on, or ruling out different things helps.

Best of luck to you too.