Hello all - I just discovered this site after receiving a diagnosis of COPD (stage 2 - moderate) today. I'm 37, have never smoked and am completely shocked. I felt like I'd always had some trouble breathing - I could function normally for almost everything, but was was always the slowest runner in school (though not overweight), and could never really do sports b/c of breathing issues. I was just going to get it checked out finally. This diagnosis has me feeling quite scared and alone- I have four little kids and want to see them grow up - heck - I want to see my grandkids grow up. I'm hoping there are others out there who have been where I am and can offer some hope. Thanks!
New COPD Diagnosis - Scared - Lung Conditions C...
New COPD Diagnosis - Scared
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Cadifor1
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41 Replies
•
Hello and welcome 😊 It's good you found this site because it's such a great community. Can I ask how you got the diagnosis of COPD because as far as I know it wouldn't be something that affected you at school age. There are several respiratory conditions that tend to get lumped together under the umbrella term COPD or misdiagnosed as it. Have you been given any advice or support from your doctor? Others more knowledgeable than me will be along soon. And it's the middle of the night here so I can't really think 🙄 I only really wanted to say hello incase it's the middle of the night where you are too because it can feel quite lonely if it seems no one else is around.
Thanks very much for your reply. I got my diagnosis after a spirometry test. EKG, x-ray, and heart stress tests all came back normal. I got the diagnosis by email. I'm meeting with my doctor today to find out more about what's going on. I'm just trying to stay calm.
You're pretty Young. Have you been tested for genetic alpha one antitrypsin deficiency ? You can live a very long life by doing what your pulmonologist advises. Many stage 4 ones with emphysema/copd live a long time and you are moderate . It is frightening in the beginning. There are lots of things that can be done to slow the progression for many years. Others will comment and you will educate yourself and learn a lot that will calm your fears.
Welcome to this great forum. You will get a lot of support here. I can only repeat what Maricopa and HungryHufflepuff have already said: to be honest it is very unlikely that you have had COPD since a child. And even if it had only come on now you are very young and a non-smoker. How and who diagnosed it? It concerns me as sometimes doctors go down that route far too readily because it is very much the commonest lung disease. My GP once said “I expect you’ve had COPD for the past 30 years.” And he was wrong. If you feel you can try and push for more explanations and possibly other tests.
All the best
Kate x
Hi, you’ve had some great replies from lovely people on this friendly forum. I can only echo what they say. Further investigation is needed I feel.
Welcome to you. Stay positive. Xxx
Some super replies from forum members that I can't add to but saying hi and welcome.
Hello Cadifor1, 😊That must have made you feel scared to hear that diagnosis, but like the others have said, it’s definitely worth getting another opinion about it for reasons they’ve already mentioned!
It’s a really friendly and supportive site here with some very knowledgeable people so please pop by anytime!
😊 x
Welcome Cadifor - Maricopa mentions getting tested for Alpha1 Antitrypsin Deficiency, I would go along with that too.
Did your ~Diagnosis result from a CT scan?
If you reside in UK do phone the BLF helpline for further advice blf.org.uk/
If in the USA Maricopa can probably advise you further, the American lung Association perhaps who will be able to advise further also.
Check if you can access a pulmonary rehabilitation course (on line) to learn more about how to manage symptoms of the disease, protect against lung infection, slow the progress and generally have a reasonable quality of life.
Take good care of you.
Best wishes.
Cadifor1• in reply to
Thanks for your reply. I got my diagnosis from a spirometry test. Would a ct scan show something additional?
• in reply toCadifor1
A spirometry test cannot give you an accurate diagnosis of what stage you are at with COPD. A CT scan will show precisely the type of damage and indicate a specific diagnosis related to your lungs the diagnosis given by a specialising respiratory consultant, not a GP for instance. In UK your GP won't refer you for a CT scan unless your condition is really unstable but if you are in the US I understand you can request this at any time.
The alpha1 test is done by a simple blood test, worth getting this done before any CT scan as if it is this you will automatically be referred to a specialising consultant.
Best wishes.
Yes, a ct scan would give a lot more info. It could show where the lung damage, if any, is. In alpha one the lungs would show damage at the bottom of the lungs in most cases. A simple blood test will let you know if you have genetic alpha one. I'm in the US and its relatively fast and easy to set up a CT scan.
Damon1864Volunteer
Hello and welcome to the site, there are lots of people who have been through the same thing so it's good you have joined us. If you exercise and eat healthy it all helps , it's won't cure it but will make it stable. Try not to worry we all had to take time for things to sink in. Just live your life as normal and take things at your own pace, you will be surprised how much it helps. And if you are worried about anything never be afraid to ask you GP, nurse or consultant. And we are all here for you. Have a great day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Hello Cadifor,Firstly a warm welcome. I was recently diagnosed with moderate emphysema, approx 3 weeks ago. Just like you, i was in total disbelief. I was overwhelmed with fear and uncertainties about my future. Sleepless nights you name it. Then to make things worse I spent hours on google, that made me feel even more down. I eventually came across BLF and signed up a week ago. This community literally saved me. Everyone speaks from experience and made me realise that the diagnosis doesn’t mean the end but the contrary, many on here have been getting on with the condition for many years with a good quality life by incorporating/making healthy change into their life style. I can honestly say that in a short space of time I went from rock bottom to feeling more confident about my future. Thanks to their positive and encouraging messages I now focus my energy on what I can do instead. I cannot give you advise as such as I am new to this and still learning from others but I would agree with the other posts, get more tests done.
You are not alone anymore, always here for you. Don’t hesitate 😘🌈☀️
Hello Cadifor!
What a shock for you! 😞
I can imagine that your mind is running around in circles-night times are the worst aren’t they to magnify our fears.
I was diagnosed with COPD over 20 years ago and Im still around to enjoy life. I have mild-Mod disease. I noticed my health decline these last five years as I’ve aged, I’m in my 60s now in that I’m more breathless on exertion. Before Covid hit us all I was enjoying my life, I went swimming weekly and ballroom and modern dance twice weekly.
My fitness levels have declined because I’m not as active. Like most people on here, i find positive ways to focus my energies on because feelings of powerlessness and depression can lead to anxiety and fears for our future. I tend to look reasons to be thankful every day, especially in walking and being immersed in Nature, its all very healing.
There is so much friendly support on here, dig in and let us help as much as we can.
Maybe Get the test done-I keep meaning to ask for it too as apart from my mum my siblings don’t have this disease either!
Lots of exercise, fresh foods & fruit, hobbies and pastimes will all help you live your life to the fullest and Im sure you will be on here for years to come too!!
Lots of love & hugs,
Janzo 💐
Welcome . It is always a shock whatever yout diagnosis is , you will become calmer as you learn more as janzo just said. I have learnt more here than from any doctor. Everybody here will be helpful and you will learn from their experienceTake care
It's always a shock isn't it when you receive a serious diagnosis as I was when I was told I had blood clots in my lungs back in 2017.
Thanks so much - so happy to have found such lovely people here.
Given that research shows that over half of those with a COPD diagnosis have never reached full lung capacity and are not in fact losing lung function any quicker than a healthy person,then it is very possible that you may fall into that category. I know of a 16 year old with a "fixed fev1" as the doctors call it,of 68 per cent. You can guarantee when he gets to his mid thirties it will be classed as COPD.
Very interesting and helpful - do you happen to have a link to this research?
• in reply toHoobs
Got any links to the research, Hoobs, or the gist of what to chuck into google to find the specific papers? I’d be really interested in reading more.
With the 16 yo you said about, a fixed fev1 percent predicted does still mean he’s having changes in lung volume. Percentages are ratios, and the predicted absolute figures for spirometry change with age, so the only way to have the percent predicted stay the same is for the volume in litres to change to maintain the same ratio. Purely for example, say an absolute fev1 value of 2.01L at 14 is the equivalent 100% predicted, a volume of 2.01L fev1 in a 16 yo might be 80% predicted, because the expected volume in litres for a 16 year old is bigger due to being older and having larger, more adult lungs. You can have a fixed absolute volume, to some extent - over the last couple of years, my daughter has been averaging a best of around 2L (hence why I picked that number for the example), but that still translates to a decline over time, both in percentages and in terms of total volume, because the expected values go up with age in children before starting to very slowly come down again as people go through adulthood. To make it clearer, if my daughter’s fev1 volume remained static at 2.01L to the age of 18, her current 74% fev1 as a 13 year old would translate to 61% percent predicted in an 18yo. But if the volume was still static at the age of 25, her fev1 would be 65% predicted, and if it didn’t change at all in the next 15 years, at the age of 40 she would be back to having an fev1 of 74% predicted. Bottom line, you can have static fev1 percentages over time, but you have to have changes in lung volume for that to be possible. In the 16 year old’s case, his fev1 volume in litres would have to be increasing (and therefore improving) year on year to maintain a fixed 68% predicted.
*Edited to make for an easier read.
CDPO16• in reply to
Gosh Charlie, I wish I had your analytical mind. I barely understood a word of that 😂.
• in reply toCDPO16
😂 Very much not the intention - I was genuinely trying to explain it clearly!! 😬🙈 The best bit is I was told I was rubbish at science.
CDPO16• in reply to
I think it was your science teacher who was talking rubbish! You certainly have taught yourself a lot if he wasn't.
• in reply toCDPO16
I guess it’s a case of what having decent motivation and the resultant interest can do. All joking aside, could you follow what I was trying to say, or should I edit it a bit? I’ll probably only end up making it more confusing by accident but...🤷♂️😂
CDPO16• in reply to
I followed the gyst of it so don't go to the trouble of editing it for my sake. Hope you and Bod have a decent night. xx
Katinka46• in reply to
I could follow it. But then I —like Charlie — have had to do my own research to get answers. The spirometry numbers all hinge on “predicted” results for “normal” people (age,sex, weight all taken into account) and then calibrated to see where the patient is on the bell curve. The charts show where that is in the final column (that’s where it is on my PFT results anyway!)I use a little home device that does FEV1 and PF. But not FVC. So I use the FVC from my last PFT, over a year ago.. 🤔
But bugger all that
Kx
Interesting. May be nothing to do with it but a professor I saw while an outpatient is part if a worldwide study looking at the effect of smoking exposure pre and post natal and how it may affect lung development in infants. (Sorry, but I can't provide a reference to the working group).Their theory is that exposure leads to poor lung development leading to an increased susceptibility to lung disease in later life.
I am an ex smoker but was never a heavy smoker and now have stage 4 COPD, having very quickly reached that stage inspite of leading a much healthier life after diagnosis. My father was a heavy smoker and my mum smoked while pregnant with me. Obviously I don't know, but I have sometimes wondered if my lung disease is, in part, due to those exposures affecting my pre natal and post natal lung development. My father did not develop any lung disease.
Sorry if I hijacked your post with my reply to Hoob - I’m a bit of a nerd about lung stuff sometimes, particularly the bits that really interest me. Having probably left you wondering what on Earth I was going on about, I just wanted to add a proper comment to welcome you to the forums. I’m dad to a 13yo with cystic fibrosis and a few other bits and bobs going on, and I can tell you that this is a brilliant place to get kind, caring and extremely knowledgeable advice about all sorts of respiratory issues, as well as to have a moan where required, and a laugh whenever possible. My best bit of advice is that the only really silly question is one you don’t ask, and between the members on here, we do quite literally have millennia of experience of treating and living with lung problems, both as patients and some of us as carers.
Very interesting - I was also five weeks premature.
It may not tell you anything new, but you might find this paper regarding the adult respiratory effects of prematurity an interesting read:
Welcome to this forum! Wonderful kind people. I just joined a few weeks ago after being diagnosed with mild/mod COPD and allergic asthma. I went on google and it was the biggest mistake... so please stay away from google. I also was shocked and scared after being diagnosed. But through this forum I have found many helpful people that have calmed my fears and gave me great advice on how to get on with my life!! I have upped my exercise!! The treadmill has become a daily routine as also upper body strengthening exercises. I have told myself that this diagnosis will not define me and I will do my best to take of myself. I just retired from healthcare in July and this is not the way I expected to start my retirement. But eating right, exercising, support of all these great people on this forum and trying to have a positive attitude ... I plan on living many more years!! I am working with my doctor to find an inhaler that works for me as I am having side effects from the two I have tried. So please take care of yourself !! And all these great people will help answer some of your questions and give you all the support and loving kindness !!
You are surrounded by loving and caring people on this forum. They feel like friends!! Welcome!!
COPD is a progressive disease, but not terminal. It can be slowed down with the correct treatment and lifestyle. I was diagnosed over 10yrs ago with severe COPD and still at that stage. It is scary when first diagnosed but I always look on the bright side and there are many worse off than me. Good luck. XxSheila 🙌🙏💕👍
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