Hi all, I was diagnosed with stage 1 COPD last month after some low readings on recent spirometry and not having responded to asthma medication. My FEV1/FVC was only 60% and my capacity was about 80%. I smoked for a short time in my early 20s but have rarely struggled with my chest, although I had a hospitalisation in 2009 after coughing up fresh blood. The subsequent bronchoscopy revealed that I had some airflow restriction, and the spirometry gave me a lung age of 48 (my GP says this isn't done anymore). After more severe coughing this winter I returned to the GP upon which the diagnosis was made.
What I can't understand is that during both periods in which it seems I have had exacerbations, my general health has been at a low ebb but out with these times I have been fine and have never really experienced any breathlessness, except when exercise has been really strenuous.
I have had an active lifestyle in between 2009 and now (and prior to that) - i can't yet see how I will progress to feeling out of breath for walking for six minutes on flat ground but appreciate fully that this may be in the post. To go from cycling in the Pyrenees and solo to Berlin from Scotland last summer to being unable to walk to the shops based on the spirometry scores and personal testimonies that I've read seems to be a big jump and I'm worried!
Is there anybody of a similar age with similar experiences? If anything, my symptoms have flared up when I've been under the weather but have tried to exercise too hard and this has worsened the problem.
I can't get any data about people my age with my history of exercise / comparative lack of smoking history so I'm finding it hard to get my head around this, although it's hard to dispute my spirometry scores.
Really inspired by all the stories I have read of people making adjustments to their lifestyles to stop COPD from defining them. Thanks for sharing.
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Forbes1980
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Hi Forbes you are very young to be diagnosed with copd, and as such your doctor should be testing you for Alpha1 Deficiency. This is a genetic condition but quite rare but you should be tested for it at your age. It is only a simple blood test so insist your doctor does one. Do you have any close family with lung problems?
Have you had an x-ray done? If not push for one as this is in the NICE Guidelines. I also think they should be looking at other possible diagnosies as well which a CT scan would show. x
Thanks. I don't recall being spoken through the results in 2009 as I think
they were taking biopsys at that point to eliminate cancer. I can only remember doing a spirometry test and being told by the nurse who administered it that my lungs were those of a much older person. I didn't leave with the impression that there was anything serious to manage, and have continued to do duathlons etc, although I would concede that my overall level of physical activity had dropped and I have had a number of chest infections in the last couple of years.
I discussed the Alpha 1 issue with the doctor and he said he would take the blood test once I returned to the UK (I am in SE Asia on a career break) but that the management of my condition would be identical even if the test showed that there is a genetic deficiency.
I asked for a CT Scan and the GP said that won't be necessary.
Just realised I can't go back on my phone to delete - sorry for typos etc.
Hello Forbes,I am not in your age or fitness bracket( 60 and not very fit )I was diagnosed 14 years ago with COPD but up until 3 years ago had few symptoms apart from slight breathlessness on exertion.3 years ago I contracted pneumonia and went downhill drastically,my fev1 is now 20% and struggle to do most things.My point being,even the top consultants do not know that much about lung conditions and GPs know very little.My GP confesses that I know more than he.I suggest you insist on being referred to a pulmonary consultant as any infection can be dangerous with this condition.I wish you the best of luck.D.
Hi Forbes. I agree with Coughalot. You are young and your smoking history is not really enough to justify this diagnosis. Also it has come on relatively suddenly. One of my hobby horses is that GPs are too hasty to diagnose COPD. It can be a lazy and cheap reaction. It costs the GP practices to refer patients to consultants. What caused your coughing up blood? Did anyone in the hospital say much about this? Was there an event prior to that could have triggered it? When you say the Bronchoscopy showed 'restriction' that is a word that, in lung tests, means that there is damage to the lung tissue and causes your lungs to have less air in them. Yet your spirometry has picked up an 'obstructive' disease. Sorry. Bombardment of questions! Probably because I have an unusual condotion that at first glance could be mistaken for COPD.
I was 16, non smoker and quite fit and well when diagnosed with what is now called cops, just called chronic bronchitic then. My lung age was70. The last time I was told my lung age was when I was 30 my lung age was 90. I am now in my 60s. Hang in there, try not to get too worried about the numbers, the anxiety can make you feel worse. I hope you get all the advice and help you need.
Forbes, As coughalot said, you are a young one. this is good for you. Carry on with duathlons, and lots of active lifestayle. This should help you tremendously. I was diagnosed with bronchiectasis, which is under the umbreall of Chronic Obstrucive Pulmonary Disease (COPD). OK the shortness of breath does come from your disease which makes the little alveoli stay open instead of being elastic and close thwn you have finished breathing out nd open when you breathe in.
Get yourself regferred to
1.A lung consultant to be followed up and tested properly.
2.A pulmonary nurse, which is even better than a doctor, because she is at ground level, though not in knowledge. The pulmonary nurse advises, tells you about drugs, calms your fears about breathlessness, even refers you to a physiotherapist if you need being taight how to cough sputum and how to breathe in certain circumstances like acute shortness of breath.
You did say that you stopped smoking, didn’t you? This early stage is usually stopped somehow by an active ligestyle like yours> I can expect your body to maintain itself if not recover with your good likfestyle.
Take heart, you are still young enough to maintain yourself and improve.
You are very young to be diagnosed with COPD I was diagnosed at 42 I now have the lung capacity of a 86 year old go back to your GP for further tests good luck
Hi, any update on your condition. I am 37 and I live a similar lifestyle. I smoked in college and was recently diagnosed with COPD. I have struggled with what I thought was recurring bronchitis for several years. I am being tested for the Alpha 1 deficiency.
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