Im a Respiratory Therapist who’s been in the field a long time, but I was a quite taken aback when my local Pulmonologist blurred out these sobering words… “Your COPD”, while assessing me on the ward last week. Specifically she said, “we need to find a way to better control your obstructive lung disease” so we can maybe prevent some of these hospitalizations.
COPD?, since when did I switch from having asthma to COPD? When does one cross that arbitrary point in time where their asthma changes into something else? Ive always been labeled an asthmatic, so why am I now being labeled a COPDer? Was it just a spur of the moment generalization she was making, or is this the new term she’s gonna be using to classify my disease from now on?
When we hear the words “Chronic Obstructive Pulmonary Disease” or the acronym COPD, we often think of a condition that’s a consequence of cigarette smoking. But the term “COPD” is really just a medical umbrella term that refers to all obstructive pulmonary diseases which includes asthma, chronic bronchitis and emphysema. As far as what actually causes the COPD to occur, is a totally separate issue. In the strictest terms though, if you were never exposed to a lot cigarette smoke(per the GOLD definitions),then chances are you wouldn’t have COPD as we tend to think of it. Likewise, you may have never smoked, but were born missing a protective enzyme called Alpha 1 antitrysin, which could put you at risk for liver problems and a severe form of COPD at a very early age. So even though I have chronic obstructive pulmonary disease, it’s not the cigarette smoke induced variety, which is the worse kind to have since the decline in lung function is much more dramatic.
As far as my journey from asthmatic to COPDer, the transition probably occurred decades ago at the point where my asthma, for whatever reason, decided to no longer respond to therapy. Frequent exacerbations and on- going inflammation probably led to structural changes in my airways, making them stiff, narrow and less reactive. Essentially, my reversible airways disease became less reversible.
As bad as all this might sound , Im actually better off than most. While my lung mechanics are pretty crappy, my ability to oxygenate is still very good. My alveoli are still doing a great job of exchanging gases. My O2 saturations are near normal when Im not actively flaring. I also have no signs of Emphysema.
I guess this blog post is more about semantics than anything else, it’s just that some medical words seem to sting a bit more than others. I know what COPD is, and I obviously know that I have it, but having it pointed out to me as a matter of fact kinda caught me off guard.
The line between asthma and COPD can be somewhat blurry, so for those of you who are trying to find out their own status, here are some considerations, as proposed by the COPDGOLD.org See how many apply to you.
As you can see, there can also be some overlap between the conditions as well, known as “Asthma COPD Overlap Syndrome” or (ACOS), which has opened a whole new field of research. ( Btw, my count for this checklist was 3 and 3, so I guess I fall into the ACOS category.)
The whole asthma vs COPD thing can be very confusing, even to medical people. Many patients are diagnosed with one disease when they actually have the other, or both. Regardless of what name you want to give it, the treatment for most of these obstructive lungs conditions remains pretty much the same.
Here’s an excellent article in RT Magazine with additional information on the subject .
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This is a bummer, dude. Same thing happened to my grandma, who has also never smoked. They’re still trying to figure me out though. It wouldn’t surprise me if I get the COPD label too some day.
Hi Ben,
Im cool with it, doesn’t really change anything. Hopefully yours wont turn that way.
Dear Breathinstephen
Love your blogs, your spirit, your courage. My condition is defying diagnosis. I have chronic thromboembolic disease from post-operative pulmonary embolism. But it is too mild to account for my extreme, irreversible breathlessness. It’s an obstructive disease, that happened very soon after the PEs, maybe caused by the six weeks of bleeding in my lungs that were caused by the clots. All confused by my having had asthma for 57 years before the PEs. So EVERY doctor has – unsurpringly – assumed it’s asthma. But it has never responded to treatment that was very effective to relieve my asthma before the PEs. For two decades before my op my asthma very well controlled and I was fitter than I had been before. Looks like it MIGHT be constrictive bronchiolitis. A fibrotic condition that might have come about if my lungs overdid the repair process. I am breathless all the time with increasing airtrapping every evening. And nothing to relieve the symptoms. Nightmare. So I identify so much with your descriptions of your symptoms. A massive relief to make contact with a fellow sufferer even if it a different condition. Like you I did not want the COPD label but it comes under that umbrella even though it is very unusual. Anyone else out there with something similar?
So very grateful to you for blogs.
Love and all best wishes
Kate
Hi Kate, Thanks for the kind words.
So sorry to hear that you’re struggling. Im afraid I don’t know a lot about the negative consequences of PE, but I know that fibrotic changes are pretty common in a variety of chronic lung conditions. Not sure if the air trapping or the fibrosis is causing your dyspnea, but either way, I know it can make a person miserable. Do you require supplemental oxygen to keep your sats up? Does O2 relieve your dyspnea? Do nebbed bronchodilators offer any relief, albeit temporary? Are you a candidate or have a desire for lung transplant?
How do you cope with your dyspnea? Do you take opiates or benzos? Are you able to get any exercise in?
Take care
Steve G
Thanks very much for your reply. On the other side of the world so our times are out of step. Oxygen sats are generally up, with desaturation on exercise. Last 6MW: shorter distance and sats 79%. Have only been offered oxygen on a few occasions when my GP has sent me to A&E. Nebs have been no good, likewise all bronchodilators. And two courses of prednisolone. Which is why I feel that the damage is not to do with inflammation, (no wheeze, no cough, no congestion, no mucus production) and is largely down to fibrotic damage to the small airways.
How do I cope? I think the breathlessness may be easier to manage than yours because there is no wheezing etc. I do massive relaxation stuff and try to maintain good breathing technique, (taught to me as a child on an asthma programme and developed over the years). The more active I am the worse it gets, which is tricky. I am hugely blessed with very supportive family and friends, and an incredibly patient husband, disabled himself by spinal injuries. My excellent consultant (do you have that term in the US? Senior doctor) is working through possibilities and may be able to offer medication. Lung transplant not on the cards. I’m too old and probably not ill enough!
Thanks again and I look forward to your next blog.
Love and all best wishes
Kate xx
I honestly don’t know who to believe. I had my first asthma attack at 7. The next asthma attack as far as I can remember was in my 20’s. I constantly found breathing a little difficult so I was put on a preventive. I have been on that up to and including now, I’m now 74. I started coughing in 2015 and am still coughing. I have had several spirometry tests and have been told I now have COPD. I can’t see how. I was becoming breathless just standing up from a sitting position and lying in bed and walking. I was put on Spiolto Resplimast inhaler. I considered I got worse so I stopped it. Maybe I just had a bug, I don’t know. Now I’m just on my asthma preventer again and my breathing has improved almost to what it was but I still cough. I saw another Dr. who said (no examination) I didn’t have COPD because I have never smoked. I don’t really believe I have it but I don’t really know.
The only way to tell for sure if you have COPD( which includes, asthma , emphysema and chronic bronchitis), is by having breathing test known as Spirometry done. Im not sure what’s causing your cough, but it’s pretty common in all of these diseases.