Need thoughts, advice from people with COPD. Long post, but bear with me

All,

In Jan this year, I had acute onset of dyspnea, chest heavyness, audible wheezing, like a whistling when I exhaled. I was smoking at the time, been smoking off and on since I was a teen, I am 43 now. I have had some long periods when I didn't smoke. This last time was for about 4 months, pack every 3 days. When this began that was it for the cigs. I used my Albuterol ( I have a hx of allergic asthma I thought, but maybe it never was) but it didn't take the sensation away completely. If much at all. My Ex wife, and I got a dog around this time, I am allergic, so thought it was the dog. Went to see the GP, he listened to my lungs, sounded fine, except on forced expiration, when I coughed and wheezed. Prescribed a steroid inhaler. I used it, and it did take away a dry cough I had, otherwise no difference really. Maybe slight. Had a CXR too, was normal. Saw a Pulmo in April, thought it wast he dog. Sent me to a allergist for testing, even tho I knew I was allergic. She did spirometry in late May, well above normal. My FVC/FEV1 was 78. FEV, FVC both over 100. Still I had the constant dyspnea. Prescribed Dulera, not much difference. Maybe some. But not much.

I have been away since June fron New Mexico, and the dog. I am in Alaska now. Been on a ship, on shore, in different places. But the dyspnea remains. ALL the time. The whistling noise, the heaviness of breath. Wheezing. I go to stand up, it gets worse, I walk, it is worse. You can hear it, well I can. Take a shower worse. Always there. Sometimes I exercise, not as heavy as I used to, and I don't notice it as much, but I still do, if that makes sense. When I stop, sometimes the whistling, the heavyness intensifies. Lifted weights this morning and was so out of breath, thought my heart was gonns leap out of my chest. 02 sats 96-98. And I have this sore throat too, especailly after activity. Mornings seem to be the worst. No cough, no phlegm, no fever. I have not been sick this year, thankfully. I wake up with a dry mouth every morning, used to breath through my nose at night mostly.

I had a spirometry done 5 days ago: FVC:6.06, FEV1 4.39, FEV1/FVC 72.9

Post Albuterol: 6.49, 4.79 73.8. Yes, good numbers, well above normal. Except for the ratio which is close to the cutoff of 0.70. Even went to 68 today when I did one, and came up to 72, post Albuterol. That is a big difference from May! Still, with how I feel, not sure how this is possible. I have constant dyspnea and this whistling, harsh breath sounds. Feel like they are in my throat. If I do a forced expiration, you can tell I wheeze as well. I wonder if I have emphysema, and have for awhile, but thought it was exercise asthma. I never used my inhlaer much prior to this, and when I did, any wheezing went away COMPLETELY. Now I use it more often, and not much change. Lasts maybe 2 hours, and I am still uncomfortable.

I am supposed to see the Pulmo doc on 11/9, for full PFT's. I emailed him the spirometry and he said it looked fine. Asked him to comapre it to May, have not heard back. Not that it matters I guess. I know you can have emphysema, and normal PFT's, but how I feel, I should be late stage, yet the spirometry says otherwise. Many people have early COPD, and no sxs. What gives? I know it affects everyone different, but this is crazy. People can have norma spiro, but a low DLCO, I guess I will know soon. I may ask for a chest CT too. The pulmo said if PFTs normal, then we can discuss other causes. Guess I wil know soon. I asked him about the FEV1/FVC ratio. He said I was overreading it. That handheld spiro makes results look worse than they are. Mine were "normal". But I feel like crap, since Jan! Overall, it is not as intense as it was at the start, but in some ways feels worse. Especially the past few days.

Anyway, thought I would pick some brains on here. See if anyone had similar circumstances? Opinions please. I know the numbers look ok, but I feel terrible. As I write this, I still have the feeling. Especially in the morning. I have this high pulse rate and worse dyspnea, even with standing, walking. A few weeks ago, I could hit the sauna for an hour or more. Lucky I can get 30 min, if not less. Tired all the time and get dyspnea from talking. If I think back to last spring, I had a similar problem, something didn't feel right in my chest, and I had the harsh breath sounds in my throat, mild dyspnea. Stopped smoking then, had been for like 3 months. This went on until July I think. Also happened in 2011, just came on out of nowhere. Was told I had vocal cor dysfunction. Can't recall if I was smoking. I didn't have the fixed wheeze then. This is different though. Didn't wheeze like I do now. Maybe I have had copd awhile, but didn't know it, discounted it as Asthma, not sure anymore. I just feel like crap! I use Albuterol now, maybe once a day, takes the edge off. I could use it more, but what is the point? Does not really help. Even if I had mild copd, the amnt of breathlessness is too much! Ill admit, I am anxious, not sleeping very well, this is understandable. Not in my head, despite the long winded post. Yeah I am depressed and anxious. No hx of either of those. Ill add that I have not had a cig since Jan, soon as this began. I knew something was wrong and was done.

Ok, don't mean to come across as neurotic, just I am super bothered by this. Please excuse the long post. Many of you have lived it. Appreciate any feedback.

Be well,

Patrick

38 Replies

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  • Hi and welcome , Sorry Patrick but I hate being the first to comment as I hate trying to diagnose ailments, it could be so many things, hopefully somebody will be along to help, it's horrid when u feel so crappy all the time and no real diagnosis to pinpoint it to. Really hope u get ur appointments soon and whatever course of action helps. Take care xx Sonia xx

  • I understand. Just looking for folks who may provide insight. I realize everyone is different. Yes, very troubling how I feel.

  • Hi Patrick. ..am really sorry but you lost me somewhere in your post.

    But you do sound a bit like me...when I was first told I had asthma and copd. .

    You had all these tests. ..that got to many numbers for me...

    What about X ray and C T scan. ..have not had that done...or did I miss it in your post.

    Andy.

  • Andy,

    Yeah, i was long winded. I have had persistent wheezing/dyspnea since Jan. Like all the time. Never lets up. Sometimes worse with any movement. Talking as well. I had a chest X-ray in April and it was fine. No CT scan yet. Getting full PFT's soon. Spiro normal back in May, but did another recently and it showed a change. Lower limit of normal on the FVC/FEV1. Started feeling worse on Friday.

    Whats up with your symptoms. Or how did they start?

    Thanks,

    P

  • I went to hospital to see a doctor as I thought I had a very bad cold and needed antibiotics . X ray and spirometry ..showed I had copd.

    You do know that copd doesn't show up on X rays until it's advanced enough to show on the X ray.

    I had an X ray 2 months before that one and there was nothing that showed up.

    But even now the doctors tell me that it very mild copd.

    Having said all that Patrick my breathing not very good.

    I think now with the knowledge I have picked up on this forum. .I would definitely be asking for a C T scan.....even if you have to pay for it...its to expensive. .

    Good luck.

    Wish you well.

    Andy.

  • I know that CT is the way to go. I may ask for one, depends what the Pulmo says. I went through and read some of your posts. Well, you are in early, so you should be good. The big thing for me is, even if my results are not perfect, I don't get why all the dyspnea. Some anxiousness which I know does not help.

    Been to Thailand myself a couple times. Wonderful country. My favorite food hands down.

    P

  • Hi Patrick and welcome....just to say that I have a near constant wheeze too....I have been diagnosed with asthma / COPD .

    I hate hearing the wheeze, so much so I always have to have the radio, tv or music on to try and cut out the sound.

    My next door neighbour is the same so we make a right pair!

    We both have productive coughs though....do you not cough up any stuff?

    I wonder if you have an infection which is making you feel so poorly....have you had any blood tests to see if you are fighting any bugs?

    Take care

  • No cough, except for a dry one at the start. Went away with an inhaled steroid after a couple days. No fever, have not had a cold this whole year, which is surprising.

    Yes, the wheezing is annoying. It can only be heard with forced expiration as wel. Not with normal breath sounds and stethoscope.

  • Hi again, I have just gone back and reread your post....you say you have a dry mouth often....maybe that's because you are mouth breathing.

    Try and breathe gently through your nose with a relaxed diaphragm....belly breathing not tight upper chest breathing. I find it does help....mouth breathing makes my wheeze worse.

    Have you tried the pursed lip breathing technique.....breathe gently in through your nose and then out through your mouth with pursed lips. You can find it on You tube.

  • Yes, dry mouth, especially in the morning. I have tried breathing through my nose and continue to do so.

  • Hi, Patrick. It is so worrying when you feel so unwell but the doctors don't seem to be able to pin down why.

    I can't help you except to say that I was diagnosed with moderate COPD this year despite mainly mild readings, because as a trained singer my breath control masked some of my symptoms - that's probably why it took 11 months to reach the diagnosis. Maybe your lifestyle is masking something too - you could try a symptoms and activity diary to see if anything makes it worse - I certainly find humid environments like showers and rainstorms make me worse, and high altitudes. At least you know your symptoms haven't been caused by the dog.

    Do you get time off in the UK at all? If you do, you could phone the BLF nurses and have a chat with them about your problem.

  • I live in the US. Good system you all have. What were your readings may I ask. So mild at first, and then moderate? You had two sets of spiro's?

    P

  • I can't remember my readings precisely. The FEV/FEV1 ratio was about 72% and the computer graphic on the surgery computer showed most of my breathing pattern as the bottom end of normal but lower than normal after the first second of forced expiration, when I would start wheezing, until near the end of the test when I managed to get about the same amount of air out as someone on the lower end of normal. But with my breath control and training, I would have expected to be at the top of the range, not the bottom.

  • That is a good ratio. Depends how you feel in the end I guess. I can see where singing may play a role in masking the numbers.

  • Hi Patrick for the third time....you will be fed up of me!

    I tend to over breathe or hyperventilate especially when I am stressed, this can lead to feelings of anxiety and increased breathlessness.

    I have hyper inflated lungs...I guess that means that I hang on to the air that is in them.....pursed lip breathing just a few times helps get rid of the stale air so fresh stuff can get in.

    Good luck with the ct scan and I hope you get some answers soon.

  • For sure, I get anxious, and that does not help. Been very much so lately. I appreciate the info. Really do.

  • Hi Patrick, Jut a thought , have you had your heart checked out? You say it was pounding when you lifted weights? Heart problems can cause breathlessness but wouldn't account for wheezing.

  • No,not fully. Did have an ECG, was normal.

  • Might be something to bear in mind if other avenues lead no where. You would need more than an ECG.

    Hope you get things sorted soon.

  • I agree. The ECG is a start. The big thing is the dypsnea and the wheezing. The tachycardia as times bothers me. Cardiac issues can cause this, tho it is more likely my lungs and mt smoking hx. We will see after the full PFT's.

  • hi welcome to the site . think its best for you to wait till you had full lung test and if you can a ct scan to see what results are , my fve1 wasn't to bad to start with it was my dcol that was really low and ct showed emphysema night time I get the wheezy sound never have much off a cough or bring up phlegm but breathing is bad , its wasn't till I had full lung test and it showed what dcol was that doctor could see why my breathing was so bad ,as they couldn't see from spirometry test why I was so short of breath you may be different , take care ,malcolm

  • I have read about that. Very possible. May I ask how your symptoms began? What your spiro show? Message me if you prefer. Yes, need to get the full battery of tests.

  • was getting out of breath when playing with my kids, getting coal wood in for fire , cant remember spiro results then but was fairly high told copd given ventolin inhaler didn't help told gp she said don't use it then 2 years later lung collapsed consultant ask what was on for copd said nothing told him about gp he hit the roof gave me inhalers had to have op to glue lung and part of lung removed

  • Huh. Then you had the CT scan, after the lung collapsed. So the initial dx was in 2011? But 3 years later your lung collapsed? Did you quit smoking when you were dx, or have you ever smoked. So the dlco was low too? I know that having normal Spiro results or near normal, with low DLCO can happen. Don't think very often.

  • dx for copd was 2011 had spiro and chest xray , xray was clear yes I was heavy smoker carried on 2013 lung collapsed then had ct scan confirmed bullous emphysema

  • I see. So you continued to smoke. No judgment of course. Did you quit once this happened? Did they remove the bullae too? Or just reinflate the lung?

    Appreciate the feedback.

  • yes I stopped. yes removed 40% of lung of left lung still some there and on right lung from ct and dlco consultant classes me as servere

  • sorry left and right wrong way round

  • I see. Wow, the bullae was big from what you describe. Be curious to know what your spiro was when 1st dx.

    Thanks for the chat. Appreciate it.

  • your welcome , there was several bullae there

  • Yes, bulluos emphysema is usually when people have the low DLCO and pretty normal breathing test, as you would know more than I

  • last nov full lung test was fev 66.2% dlco was 39.6%

  • I see. Hey thanks for the info. How do you feel nowadays?

  • short of breath, side had lung op on get funny sensations on as they cut through nerves , should say im round your age im 40

  • hi again just looked through my gp notes at time of dx it was fev 68% predicted was 72%

  • the FEV1? I thought the predicted would be higher. Well you were not that far off I guess. Maybe you mean the FEV1/FVC ratio. I guess not bad numbers considering you were as you say a heavy smoker. Must have been small when you first were dx.

  • Yeah, I am 43. Been dealing with this for the past 10 months. A bit slow bringing it all together, expected it to go away, which it has not. How did you feel from the time it started until your lung collapsed? I know you mentioned you smoked, so I am sure you attributed your sob to the smoking and the copd. How were you to know you had that bullae growing.

  • Could it be your heart?? Worth checking out. I was diagnosed with emphazema but doc said I should not be this breathless and should make an appointment to have my heart checked out.

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