Very severe COPD with atypical symptons

[rogerw117]

I've never posted before, just commented. I'm posting now because I'm not sure if I'm unusual! I have very severe COPD, charmingly named "end stage", FEV1 21% and been at that sort of level for several years. I have "bad days" but I don't think I have real exacerbations - I'll cough and huff more but it's not that bad and I've never been hospitalised. I'm really fortunate to miss the symptoms that make COPD so horrible for some, but my breathlessness is really bad.

Anyway, are there others out there who are basically quite healthy in most respects, coping with life, not depressed, not having serious exacerbations but serious (though fluctuating) breathlessness? By fluctuating I mean a solid half an hour on a treadmill (2km) four weeks ago, and no more than 100m today without taking a break.

[Caspiana]

Hello rogerw117 .

I have Bronchiolitis Obliterans a disease of the small airways. My FEV1 is at about 30%. And yes, I understand what you mean. On a good day (although breathless) I can walk well (on oxygen) and sometimes go for 3km or so. Unfortunately this yoyos quite a bit and for two good days I have a couple of bad. Increased breathlessness is a hallmark of this disease and some days its just really stressful.

I had bad depression at the onset of my disease. But now I am mentally in a good place.

So glad you posted.

Cas xx 🌿

[skischool]

Rogerw117 i have severe emphysema and an fev of 22% similar to yourself.i am amazed at what you appear to be doing in terms of exercise given your condition.i am confused as to what you are requesting,confirmation that you are lucky you do not have exacerbations or do others suffer similar breathless issues??.i have ambulatory o2 for walking and exertion due to desaturisation on exertion,do you use oxygen at all?give us more details please.........skis

[rogerw117 in reply to skischool]

Sorry, I wasn't clear. I use ambulatory oxygen (a POC) whenever I'm out including at the gym. I'm interested in whether others (a) have severe dyspnea but don't have other COPD symptoms in a major way and (b) whether others have big variations in what they can do. I too was (pleasantly) amazed at 28 minutes on the treadmill; tonight a short walk was tough. Why so different?

[skischool in reply to rogerw117]

As other have said we are all so different,you appear to be like me in that you have chronic airway obstruction/restriction but without the inflamation and mucus that other people suffer,i believe we get less exacerbations because we are not harbouring or producing mucus that by it's nature will attract most unpleasant bacteria so in that sense we are fortunate..........just a theory?.............regards skis and scruffs

[Twoose]

I have not had an exacerbation ot been hospitalised with my severe emphysema. The only symptom I have is sob and reduced stamina. The cold weather makes things slightly worse measurable when I go to the gym in having to reduce the speed on the treadmill and lower the weights on the machines. I think that what your trying to find out is too difficult to answer. We are all different and because we all come under the copd umbrella which might be good for the medics it doesn't actually help people with individual illnesses. I found it quite confusing at first but now I look at it as a vegetable shop, I'm a carrot you might be a potato there is no comparison but we're both vegetables. I am also learning some of the things that makes me less able for instance if I succumb to cakes biscuits or my nemesis doughnuts my sob is worse!

I hope that makes sense. The very fact that you are termed end stage should give you a clue that the medics who devise these terms and use them don't really have much of a clue and just keep up with what you are doing and keep up the exercise.

[2greys in reply to Twoose]

I like your analogy, with the vegetable shop I have not been hospitalised with my severe emphysema, yet, I have been discharged from the A&E and sent home again on both occasions. I get very short of breath very quickly, but I somehow I manage to cope, using pursed lip breathing, which I have to do all day whilst working and to exercise. I have done this for 18 months now and have grown used to it, being second nature. I get good days and can go out in the evenings after work. I get bad days and I really struggle to get through the day (but don't give in) and cannot do anything when I get home. Again, I am also used to having good/bad days now.

It does make it difficult to plan anything in advance, not knowing whether I will be on a good or bad day. I can also start off on a good day and suddenly within minutes I am having a real bad day, no rhyme or reason it just happens.

I have no control over these events it just is, I have no choice other than accept that is how things are and take it a day at a time.

[shadow4me]

I would think you are one lucky person to have not a lot off the awful symptoms and have avoided depression and still enjoy life I hope you enjoy many more off these years xxxx

[flo1]

Re your post Rogerw117, its entirely possible to have a low FEV which you clearly have at 21% (mostly accounted and documented as end stage) but a high DLCO (GAS TRANSFER) its vital you know both before classing yourself as end stage, first and foremost, there is more to us than FEV!!! Many Asthma patients for instance have low FEV in the end stage bracket with a high DLCO for instance, the gas transfer is something most patients fail to notice as they are only made aware of the FEV which is wrong incorrect and misleading...gas transfer gives you a direct indication of the area damage (surface damage) to the lungs themselves the FEV is mostly induced by our excercise capacity so for instance if we excercise daily we generally have a higher one with a standards emphysema patient ...but a low gas transfer as no amount of excercise will increase this. The FEV is fluctable, its not a great guide in honesty there is a whole heap of test results on the breathing test reports that indicate exactly what is happening to the lungs, and its not just FEV!!! Asthma is a manageable condition emphysema is not, its progressive and destructive, ask your health provider to carefully explain where your results lie, I have many patients with low FEV able to focus , work and get through a day at the office, something someone with emphysema on a severe level could not attempt! ..look at the DLCO ask them, if this is low then you need to ask where you go next, I had a 22% FEV aged 46 with a 24% gas transfer, the gas transfer never increased in over a decade, bu tthe FEV doubled after I quit smoking I have the middle sections of both my lungs left I am 56, please ask them if your unsure and not working this stuff out ...it mostly important to you the patient, but asthma has the high gas transfer and low fev...and many people live with this condition into their 80's!!