Fitness coach diagnosed with copd

[lochossian]

Am still reeling from diagnosis of moderate copd ( fev1 69%) when i went to doctors two days ago. How can it be? I am a dance teacher, cyclist, swimmer and although i am 58yr woman, have never smoked and always thought i was quite healthy! I dont get out of breath and dont have a cough. The lung function test was done as part of general medical - in my VO2max i had equivalent fitness of 25-29yr old! I suffered hayfever with associated asthma since teens but barely had to use inhaler to control and only during pollen season. Recent years it appeared to get less bothersome but obviously gradual progressive damage has often taken its toll. Not sure what i should do now - what is prognosis? Very depressing. Anyone else in this situation?

[risabel59]

I think that maybe you should get a second opinion? Lung function tests are not the be all and end all. Particularly as you have always had asthma.

Best

R

[Hidden]

Morning I would get a second opinion on your first diagnosis particularly if you have been athsmatic most of your life and you sound very fit and able ....spirometer tests x-ray scans speak to your GP regarding your feelings about it I hope you feel better soon and get some resolve in your situation good luck Angie xxx

[lochossian in reply to Hidden]

Thanks Angie x

[jabber]

Good morning and welcome to the forum. You have come to the right place for support and advice.

Don't let the copd label get you down! I think you might be right in that gradual damage from your past hayfever and asthma have taken their toll on your lungs, so you've now joined our not so exclusive club. One of the first things we are told is to stop smoking (! I've never smoked either) and keep fit. Well, you're already there so that's brilliant. The good thing about this diagnosis is you are now going to be monitored, and if necessary given the meds you need to keep you where you are.

I was diagnosed with severe copd at 59 following years of asthma which with hindsight I can see was never very well controlled. I was not at all fit, having given in to breathlessness far too often and just curled up with a good book. I was put on oxygen and I'm also a CO2 retainer. I am still not particularly fit, though I try harder these days, but here we are nearly 10 years later, still going strong, still getting out and about and enjoying my life.

You have a head start - the fitness of a 25-29 year old! I think if you just carry on as you are then your long term prospects are as good as any person with so-called 'normal' health.

If you'd like to speak to an expert, you could call the BLF Helpline tomorrow (03000 030 555) and I'm sure they'd also be able to reassure you.

Best of luck and please let us know how you get on, Jan

[lochossian in reply to jabber]

Thanks for the encouragement Jan! Yes I only used my ventolin on the odd occasion with my asthma and never used the evil steroid (brown) inhaler. Maybe I should have done! Just don't want bone consequences of steroids on top of copd! So glad that you're still going strong and leading what sounds like a good normal life. (I think they must have made a mistake with my fitness estimate!) I will indeed call helpline tomorrow - thankyou x

[Hidden]

Hi sorry to hear your diagnosis. Unfortunately you don't need to have been a smoker and you can be the fittest person in the world but can still get copd. This is largely dependant on inherited genes as well and if you have poor ones then you have more chance of having lung damage.

Only around 1 in 4 smokers will get copd anyway so you can see how important genes are. I would get this double checked if you are unsure, but with such a high lung function as yours there is no need to worry unduly as you will still have a fit and active life for many years to come. x

[lochossian in reply to Hidden]

Thanks for your advice lilaclil - would you recommend getting A-trypsin (or whatever its called) genetic test? My kids in their early 20s could inherit the condition. My dad has got copd but he is 92!

[Hidden]

I would ask for one to be honest. You have never smoked and are extremely fit and if you have close relatives with copd then it is possible you do have the genetic link. It is rare though so try not to worry too much. It is only a simple blood test so wouldn't take much time to do so yes ask. x

[lochossian in reply to Hidden]

Yes, thankyou, I will ask but my GP is a bit parsimonious with the old tests! Here goes...

[Hidden in reply to lochossian]

I believe you can get it done online Lochiossian but am not sure. x

[O2Trees in reply to lochossian]

It would be good to have the test just to rule it out lochossian. Odds are you don't have A1A but worth checking. It is more likely that it would have showed up earlier if you were to have it. But I had the test when I was around your age and it came out negative.

20% of those with copd never smoked, just to add to what lilaclil has said. But it would be great if it turned out to be an incorrect diagnosis. Good luck and let us know.

[lochossian in reply to O2Trees]

Thanks O2Trees I will. Am getting the results of todays xray next week - the radiologist exclaimed "Ooh long lungs". Oh dear. Is treatment any different for those lacking A1A? can they just give you some?! I suspect not.

[O2Trees in reply to lochossian]

I have long lungs too lochossian. When you have a chest X-ray remember to tell them that before you have it otherwise sometimes you have to have a second one. And who wants more radiation than they have to have!

I don't know enough about A1A treatment - try not to worry about that as you quite likely don't that it. If you do, then there are people here who will know the answer and give you info.

[Susie-54]

Hi I got an Idiopathic Pulmonary Disease diagnosis November 2016. Same kind of symptoms non smoking -teacher and swimming coach. You might ask about that as stopping the destruction of lung tissue is the key and there are anti rejection drugs that have kept me stable with 50% operational lungs.

[hopetorun]

I think the breathing tests are only one of many tests used to determine lung health.

If you are not used to these tests then the reading could be not as good as a more practiced person.

You need to see a specialist. I have copd from having asthma all my life.

[casper99]

I don't blame you for being gobsmacked, although it seems quite common, for none smokers to be diagnosed with it.

I wouldn't be happy with just the spirograph diagnosis. Only a scan can tell for sure.

If, you learn you do positively have Copd, then the posts from other members, let you know it can be managed.

You already have a healthy, fit lifestyle.

You don't get breathless and if they hadn't have given you that test, you wouldn't even know you've got it so, that's how you need to look at it, because it could be years before you even have any symptoms, so while your symptom free, don't waste time worrying about it. xx

[lochossian in reply to casper99]

Sound advice. Thankyou. I've just set up my own pilates and dance fitness business too!

[lungnorm]

There is a gene that can make you susceptible to having emphysema. You do not need to be a smoker etc. It Alpha-1-anititrypsin defisiency (AATD). There is a blood test to see if you have it.

[lochossian in reply to lungnorm]

Will ask about this. Thankyou

[katieoxo60]

Hello Lochossian, I would ask for further investigation into the new diagnosis especially as you are a non smoker. It may be a situation of heritory COPD just the same as asthma not due to poor lifestyle habits. Not all lung conditions are caused by smoking, including COPD.If you are generally fit I would keep up the good healthy living and go for a second opinion. Obviously if you have Asthma you may get fluctuating lung readings. and your lungs may not be quite as good as others but if you can do things like you do with no breathing stress or cough you must be fairly fit, which is good. Do what is best for your health, it seems to have worked so far. One test is not sufficient evidence, and for many genetics play an important role in lung condition. Best Wishes hope you get it sorted out soon.

[lochossian in reply to katieoxo60]

Thanks for info and reassurance Katie

[katieoxo60 in reply to lochossian]

You are welcome

[santisuk]

What you should do now is get a 2nd opinion from a pulmonologist - even if you have to pat for it yourself!

[lochossian in reply to santisuk]

Yes I tend to agree santisuk- never heard of a pulmonologist before now!

[Rougho]

What about the pool chlorine? That must have an affect on ones lungs!

[lochossian in reply to Rougho]

Well I suppose so, but the pool I go to uses ozone not chlorine apparently

[Rougho in reply to lochossian]

Maybe get a second opinion! If you feel healthy and can exercise! Run with that!

[LolaEs]

Hi there, I think you should ask for a second opinion too. I got a letter saying I had COPD after a test and it caused me loads of distress. It turned out to be wrong although I did find out after many more tests that I have bronchiectasis. I had a cough and other symptoms. I wish you all the best

[lochossian in reply to LolaEs]

Thanks LolEs - yes its very stressful but I think they're probably right in my case as I've had one assault after the other on my lungs. Dad smoked in my first 2yrs, grew up going to school in centre of Glasgow (before cars and buses were cleaner) near a busy road. From 16yrs had hayfever related asthma and now live in country where pesticide sprays and harvest dust is an everincreasing issue (although strangely the asthma has reduced over last 7 yrs since menopause). I hope your bronchiectasis can be managed well. How did they discover that?

[LolaEs in reply to lochossian]

Am sorry to hear that but hopefully you can still lead an active life. I am a yoga teacher and have had to adapt but am determined to be teaching again soon. I have had hay fever since a teenager and well controlled asthma since I was 18. I had a persistent cough on and off for almost two years, which occured after two lots of bronchitis whilst living in Spain. The winter was very harsh and I had no central heating ( few people in this area do). Then the spring came and I couldn't stop coughing. The doctor said it was allergic asthma. I came back to the UK and had more interventions but an X ray came back clear and I was given Montelukast, which helped. I travelled and lived in a different part of Spain and the cough cleared up until I got back to the UK. The docs discovered I had bronchiectasis because I had developed reactive arthritis when I came back from Central America. I had test after test and an increase in chest infections until I finally got a diagnosis. Apparently mine is mild but I've had pneumonia and lots of chest infections so haven't quite got back to the level of fitness I had..Yoga and mindfulness have really helped me. Sending you lots of love

[lochossian]

That's quite a journey LolaEs - I imagine it was a relief in a strange sort of way to finally get your diagnosis and at least its mild so maybe far more manageable. I think yoga is fab for lungs. Everyone should be doing it! I hope you get back to teaching soon