UPDATE Ncep:diagnosed with copd at 47, have a few questions

[cous0226]

long story short - I was diagnosed with asthma at 21 and now I'm 47.  Anyway through the years I've taken medicine when needed.  I've never had an attack or been to the hospital.  It is just an annoying cough.  Sometimes it's gone for a while and come backs for a few days and then I take medicine etc.    

So since March I've been coughing more and I think it's because I'm home, no clean air as I don't really cough when I am outside nor did I cough when I was in the office.  My husband is like why don't you get it checked out by a Pulmo.   I got a chest X-ray which I don't believe I had at 21 when I was diagnosed.   Anyway to my shock, it said COPD on the report.   I see my Pulmo this Saturday.  

Anyway, all google tells me that it's common mostly upon smokers.   I don't know if asthma turned into copd or I never had asthma but I was 21 and can't imagine it was copd at that age.   

Anyone have any experience or what should I ask my Pulmo?    I meant the visit to be just educational to get on the right medicine so this was a bit unexpected but want to make the best use of my time.  The report a few times mentions "mild" and according to google that's stage 1 so I guess I am ok.  

[Michelle]

Are or were you a smoker? I imagine environmental factors could have caused it too. The only people I know who have had it are/were smokers for a significant duration of their lives.

Incidentally, my MIL has it and also has asthma. I think if you have asthma and you smoke you are almost guaranteed to get it.

[cous0226]

Jan 18, 2021 15:05:05 GMT -5 Michelle said:

Are or were you a smoker? I imagine environmental factors could have caused it too. The only people I know who have had it are/were smokers for a significant duration of their lives.

Incidentally, my MIL has it and also has asthma. I think if you have asthma and you smoke you are almost guaranteed to get it.

I’ve never ever smoked. I definitely had allergies but did allergy shots for 6 years ended in 2018 and that helped a lot.

[waverly]

I don't know anything about COPD. But my thought while reading your post is maybe you need a separate unit Hepa air filter at your home if you cough there and not at the office/ outside. I
imagine like Michelle said environmental factors could be at play.

[cous0226]

Jan 18, 2021 15:09:38 GMT -5 waverly said:

I don't know anything about COPD. But my thought while reading your post is maybe you need a separate unit Hepa air filter at your home if you cough there and not at the office/ outside. I
imagine like Michelle said environmental factors could be at play.

Thanks yeah I just bought a humidifier recently for the bedroom so hopefully that helps a bit. I also need to be on different medicine now because I’ve been on asthma medication this whole time and that’s what prompted it all as I was still coughing. I know both diseases share some of the treatments.

[darthnbjenni]

Have you had your house checked for radon recently? I developed asthma as an adult (and while I can not prove it, I believe it's from working in a classroom with carpet and potentially black mold for 12 years). I've had a cough for several months this year (not Covid - I work from home), and have researched COPD a bit. I have never been a smoker, so I was looking at other causes and radon exposure seems to be a common one.

[cous0226]

Jan 18, 2021 15:16:59 GMT -5 darthnbjenni said:

Have you had your house checked for radon recently? I developed asthma as an adult (and while I can not prove it, I believe it's from working in a classroom with carpet and potentially black mold for 12 years). I've had a cough for several months this year (not Covid - I work from home), and have researched COPD a bit. I have never been a smoker, so I was looking at other causes and radon exposure seems to be a common one.

That’s interesting thank you. I will definitely look into it. We live in an apt building. Does that matter for radon? I hope you feel better and get answers.

[penguingrrl]

I’m so sorry. I’m sure that’s a very unsettling diagnosis to get!

I would definitely look into potential environmental sources at home since you notices symptoms more at home.

Do you have carpet? If so, is it possible to get rid of it? My allergist made it clear that living with carpet was basically not something I could ever do without having breathing issues.

How often do you open your windows? I know it’s cold where I live and probably where you do, but we occasionally turn the heat up a bit, add an extra layer of sweats, and open the windows with fans on to get fresh air blown through the house. It seems to help a lot.

What type of heat do you have? I felt worse when we lived in a house with forced hot air (duct work) than in our many city apartments with radiant heat. Our house has radiant heat and it seems to be far less dusty, which may help too.

[cous0226]

Jan 18, 2021 15:27:46 GMT -5 penguingrrl said:

I’m so sorry. I’m sure that’s a very unsettling diagnosis to get!

I would definitely look into potential environmental sources at home since you notices symptoms more at home.

Do you have carpet? If so, is it possible to get rid of it? My allergist made it clear that living with carpet was basically not something I could ever do without having breathing issues.

How often do you open your windows? I know it’s cold where I live and probably where you do, but we occasionally turn the heat up a bit, add an extra layer of sweats, and open the windows with fans on to get fresh air blown through the house. It seems to help a lot.

What type of heat do you have? I felt worse when we lived in a house with forced hot air (duct work) than in our many city apartments with radiant heat. Our house has radiant heat and it seems to be far less dusty, which may help too.

thanks it was and it's just that it's not reversible is the scariest but neither is asthma.  I'm going to have the Pulmo read my images too because the report is from the X-ray place doctor  so the Pulmo can be the 2nd opinion.  No carpeting.  Am not sure on the heat, I have to ask.  I've had allergies and so I know to try to keep the home clean of crap and stuff but it's definitely a trigger at home so probably dust.  Opening the windows is a good idea, we don't do it alot because of weather but I'd rather air out the apt and be cold a little.   I appreciate your advice.     

[wanderingback]

I think I'm a little confused, you only had a chest X-ray and that is what says COPD or did you speak with the pulmonologist who told you you have COPD?
Did you have pulmonary function tests done?

[rubytue]

Have you talked to your doctor about these results yet, or are your just seeing the radiology report (which also probably says to correlate clinically) and searching for info?

I get it, I always look at what I can when I can to form my questions before I talk to the doctor. But, if you haven’t yet, I’d talk to her about the concerns. And questions. It’s good (IMHO) to have your thoughts and questions together before hand.

[sakura]

Radon is more common in certain parts of the world and levels can vary greatly within those areas. It is natural and rises from the ground so higher levels will be found in the basement and reduce as you get higher. There are tests that you can buy to check the levels. If you find unsafe levels of radon it can be remediated.

[rubytue]

Jan 18, 2021 15:38:54 GMT -5 cous0226 said:

Jan 18, 2021 15:27:46 GMT -5 penguingrrl said:

I’m so sorry. I’m sure that’s a very unsettling diagnosis to get!

I would definitely look into potential environmental sources at home since you notices symptoms more at home.

Do you have carpet? If so, is it possible to get rid of it? My allergist made it clear that living with carpet was basically not something I could ever do without having breathing issues.

How often do you open your windows? I know it’s cold where I live and probably where you do, but we occasionally turn the heat up a bit, add an extra layer of sweats, and open the windows with fans on to get fresh air blown through the house. It seems to help a lot.

What type of heat do you have? I felt worse when we lived in a house with forced hot air (duct work) than in our many city apartments with radiant heat. Our house has radiant heat and it seems to be far less dusty, which may help too.

thanks it was and it's just that it's not reversible is the scariest but neither is asthma.  I'm going to have the Pulmo read my images too because the report is from the X-ray place doctor  so the Pulmo can be the 2nd opinion.  No carpeting.  Am not sure on the heat, I have to ask.  I've had allergies and so I know to try to keep the home clean of crap and stuff but it's definitely a trigger at home so probably dust.  Opening the windows is a good idea, we don't do it alot because of weather but I'd rather air out the apt and be cold a little.   I appreciate your advice.     

That’s not how radiology works. They aren’t the first opinion. They report what they see and the pulmonologist correlates what is seen in the report to your physical symptoms. That’s why radiology reports almost always say to clinically correlate. 

[wanderingback]

Jan 18, 2021 15:58:04 GMT -5 rubytue said:

Have you talked to your doctor about these results yet, or are your just seeing the radiology report (which also probably says to correlate clinically) and searching for info?

I get it, I always look at what I can when I can to form my questions before I talk to the doctor. But, if you haven’t yet, I’d talk to her about the concerns. And questions. It’s good (IMHO) to have your thoughts and questions together before hand.

The worse! lol. 
I love radiologists and they're super brilliant, but those 2 little words are so annoying haha...what else do you think we do other than correlate clinically all day?

[rubytue]

Jan 18, 2021 16:00:31 GMT -5 wanderingback said:

Jan 18, 2021 15:58:04 GMT -5 rubytue said:

Have you talked to your doctor about these results yet, or are your just seeing the radiology report (which also probably says to correlate clinically) and searching for info?

I get it, I always look at what I can when I can to form my questions before I talk to the doctor. But, if you haven’t yet, I’d talk to her about the concerns. And questions. It’s good (IMHO) to have your thoughts and questions together before hand.

The worse! lol. 
I love radiologists and they're super brilliant, but those 2 little words are so annoying haha...what else do you think we do other than correlate clinically all day?

😂 yes, that was my radiology joke for the day. Have you seen this? gomerblog.com/2020/03/radiologist-drafted-into-direct-patient-care-forced-to-perform-own-clinical-correlation/

[cous0226]

Jan 18, 2021 15:56:51 GMT -5 wanderingback said:

I think I'm a little confused, you only had a chest X-ray and that is what says COPD or did you speak with the pulmonologist who told you you have COPD?
Did you have pulmonary function tests done?

Hi - I got an X-ray done at a radiology place.  A doctor there read it and I was going to see a Pulmo this week with the report and images.  

Since my appt is on a Sat, I couldn't get the X-ray done by the Pulmo office because they don't have techs on the weekends so I had to get it done elsewhere but I will bring him the results.  Can you tell me more about Pulmonary functiion tests?   

[Saudade]

Ahh I was going to write the same thing, rubytue, but then I saw your answer.

Yes most radiologists I work with will never diagnose and will write "consider XYZ" or "consistent with XYZ" but always include "clinical correlation necessary" 😝

cous0226, I would go see a pulmonologist and have a work-up. You'll be in the best hands there.

[cous0226]

Jan 18, 2021 15:58:04 GMT -5 rubytue said:

Have you talked to your doctor about these results yet, or are your just seeing the radiology report (which also probably says to correlate clinically) and searching for info?

I get it, I always look at what I can when I can to form my questions before I talk to the doctor. But, if you haven’t yet, I’d talk to her about the concerns. And questions. It’s good (IMHO) to have your thoughts and questions together before hand.

yes have only see the radiology report and see my Pulmo for the first time on Saturday.  

[wanderingback]

Jan 18, 2021 15:38:54 GMT -5 cous0226 said:

Jan 18, 2021 15:27:46 GMT -5 penguingrrl said:

I’m so sorry. I’m sure that’s a very unsettling diagnosis to get!

I would definitely look into potential environmental sources at home since you notices symptoms more at home.

Do you have carpet? If so, is it possible to get rid of it? My allergist made it clear that living with carpet was basically not something I could ever do without having breathing issues.

How often do you open your windows? I know it’s cold where I live and probably where you do, but we occasionally turn the heat up a bit, add an extra layer of sweats, and open the windows with fans on to get fresh air blown through the house. It seems to help a lot.

What type of heat do you have? I felt worse when we lived in a house with forced hot air (duct work) than in our many city apartments with radiant heat. Our house has radiant heat and it seems to be far less dusty, which may help too.

thanks it was and it's just that it's not reversible is the scariest but neither is asthma.  I'm going to have the Pulmo read my images too because the report is from the X-ray place doctor  so the Pulmo can be the 2nd opinion.  No carpeting.  Am not sure on the heat, I have to ask.  I've had allergies and so I know to try to keep the home clean of crap and stuff but it's definitely a trigger at home so probably dust.  Opening the windows is a good idea, we don't do it alot because of weather but I'd rather air out the apt and be cold a little.   I appreciate your advice.     

Sorry I didn't see this response before I asked my question.
So before you freak yourself out and go down the rabbit hole of COPD, I would first go to the pulmonologist and get pulmonary function tests. That is how you diagnose COPD, not on a chest xray. Yes there are some signs on a chest xray that can be indicative of COPD, but that's not always the case. After you have the pulmonary function tests, then the doctor can likely give you a better understanding of your diagnosis. There are other chronic conditions like chronic bronchitis, bronchiectasis, etc that can cause coughing that your pulmonologist will likely be able to discuss with you. Pulmonologists are usually pretty good at taking a history to ask about things like home and work environment to see if you have any specific exposures that need to be addressed. Asthma and COPD are 2 different disease processes, but some people have overlap of them. 

I hope you get some answers soon!

[cous0226]

Jan 18, 2021 15:58:04 GMT -5 rubytue said:

Have you talked to your doctor about these results yet, or are your just seeing the radiology report (which also probably says to correlate clinically) and searching for info?

I get it, I always look at what I can when I can to form my questions before I talk to the doctor. But, if you haven’t yet, I’d talk to her about the concerns. And questions. It’s good (IMHO) to have your thoughts and questions together before hand.

My report doesn't say correlate clinically on it but I see what you're saying.   

[wanderingback]

Jan 18, 2021 16:04:31 GMT -5 cous0226 said:

Jan 18, 2021 15:56:51 GMT -5 wanderingback said:

I think I'm a little confused, you only had a chest X-ray and that is what says COPD or did you speak with the pulmonologist who told you you have COPD?
Did you have pulmonary function tests done?

Hi - I got an X-ray done at a radiology place.  A doctor there read it and I was going to see a Pulmo this week with the report and images.  

Since my appt is on a Sat, I couldn't get the X-ray done by the Pulmo office because they don't have techs on the weekends so I had to get it done elsewhere but I will bring him the results.  Can you tell me more about Pulmonary functiion tests?   

Here's some general info:
www.hopkinsmedicine.org/health/treatment-tests-and-therapies/pulmonary-function-tests

[rubytue]

Jan 18, 2021 16:04:31 GMT -5 cous0226 said:

Jan 18, 2021 15:56:51 GMT -5 wanderingback said:

I think I'm a little confused, you only had a chest X-ray and that is what says COPD or did you speak with the pulmonologist who told you you have COPD?
Did you have pulmonary function tests done?

Hi - I got an X-ray done at a radiology place.  A doctor there read it and I was going to see a Pulmo this week with the report and images.  

Since my appt is on a Sat, I couldn't get the X-ray done by the Pulmo office because they don't have techs on the weekends so I had to get it done elsewhere but I will bring him the results.  Can you tell me more about Pulmonary functiion tests?   

PFTs have you blow into a machine while someone yells “blow blow blow harder! A bit more!!” Until you want to punch them. I’m sure wanderingback can give a medical description, but that’s my recollection. It measures your peak inspiration and expiration, total lung volume, etc.

[cous0226]

Jan 18, 2021 16:10:09 GMT -5 rubytue said:

Jan 18, 2021 16:04:31 GMT -5 cous0226 said:

Hi - I got an X-ray done at a radiology place.  A doctor there read it and I was going to see a Pulmo this week with the report and images.  

Since my appt is on a Sat, I couldn't get the X-ray done by the Pulmo office because they don't have techs on the weekends so I had to get it done elsewhere but I will bring him the results.  Can you tell me more about Pulmonary functiion tests?   

PFTs have you blow into a machine while someone yells “blow blow blow harder! A bit more!!” Until you want to punch them. I’m sure wanderingback can give a medical description, but that’s my recollection. It measures your peak inspiration and expiration, total lung volume, etc.

Ahhh yes I've done that at my primary care's office and allergist office too.    

[penguingrrl]

Jan 18, 2021 15:38:54 GMT -5 cous0226 said:

Jan 18, 2021 15:27:46 GMT -5 penguingrrl said:

I’m so sorry. I’m sure that’s a very unsettling diagnosis to get!

I would definitely look into potential environmental sources at home since you notices symptoms more at home.

Do you have carpet? If so, is it possible to get rid of it? My allergist made it clear that living with carpet was basically not something I could ever do without having breathing issues.

How often do you open your windows? I know it’s cold where I live and probably where you do, but we occasionally turn the heat up a bit, add an extra layer of sweats, and open the windows with fans on to get fresh air blown through the house. It seems to help a lot.

What type of heat do you have? I felt worse when we lived in a house with forced hot air (duct work) than in our many city apartments with radiant heat. Our house has radiant heat and it seems to be far less dusty, which may help too.

thanks it was and it's just that it's not reversible is the scariest but neither is asthma.  I'm going to have the Pulmo read my images too because the report is from the X-ray place doctor  so the Pulmo can be the 2nd opinion.  No carpeting.  Am not sure on the heat, I have to ask.  I've had allergies and so I know to try to keep the home clean of crap and stuff but it's definitely a trigger at home so probably dust.  Opening the windows is a good idea, we don't do it alot because of weather but I'd rather air out the apt and be cold a little.   I appreciate your advice.     

In general it’s easy to tell if your heat is radiant! If so you’ll have radiators or occasionally baseboards, but no ducts anywhere at all (I have radiators under just about every window in my house, and no central air conditioning). Electric baseboard heat would also be fine from a breathing perspective.

If you have heat coming out of ducts they can be more prone to getting dust in them and blowing it around due to them be open holes where fest can go in and be hard to get out.

[rubytue]

I hope you get some answers soon! I must admit, I assumed your pulmonologist ordered the chest X-ray, and missed that you hadn’t seen anyone from pulmonology yet. Trust me, I get how hard it is not to read all your reports and worst case them. But, do as I say, not as I do, and try to wait til you see the pulmonologist who can explain everything.

FWiW, I’ve been freaking out ove my lymphocyte count (low) for about a year. My onc never says anything other than “it’s fine.” But it’s been under the “low” line for 18 months. Finally asked my old onc, and he said it’s just a low normal, and not to worry. I mean, I got they weren’t concerned, but he (new onc) wouldn’t tell me why. Having full access to reports and test results is a blessing and a curse.

[Doggy Mommy]

Lurker here... we have a friend with COPD. I think he was diagnosed in his mid 40s, now in his late 40s or maybe 50. We live in Colorado and they moved to California a few years after his diagnosis. He says the additional oxygen at sea level combined with not having to deal with freezing temperatures in the winter has helped quite a bit. I hope you get some more answers soon!

[JayhawkGirl]

rubytue your “blow harder” description has me LOLing. So true.

OP You probably have more tests ahead. Ask about allergen management- my immediate recommendations were yank carpet if possible, encase mattress & pillows in allergen barriers, and no open windows/attic fans. DH grew up with no AC and loved open windows. Now, they’re just sunshine let-ins and fire escapes.

[cous0226]

Jan 18, 2021 16:46:40 GMT -5 rubytue said:

I hope you get some answers soon! I must admit, I assumed your pulmonologist ordered the chest X-ray, and missed that you hadn’t seen anyone from pulmonology yet. Trust me, I get how hard it is not to read all your reports and worst case them. But, do as I say, not as I do, and try to wait til you see the pulmonologist who can explain everything.

FWiW, I’ve been freaking out ove my lymphocyte count (low) for about a year. My onc never says anything other than “it’s fine.” But it’s been under the “low” line for 18 months. Finally asked my old onc, and he said it’s just a low normal, and not to worry. I mean, I got they weren’t concerned, but he (new onc) wouldn’t tell me why. Having full access to reports and test results is a blessing and a curse.

Thanks so much.  I learned alot just from this thread and feel more prepared.  I think I would have been overwhelmed learning at my pulmo appt but now he'll have the report and images and he can run his tests as well and give me a diagnosis.  I can also ask about preventative care.   Am glad you got your answers.  Medical stuff is so worrisome.  

[rubytue]

Jan 18, 2021 17:18:51 GMT -5 cous0226 said:

Jan 18, 2021 16:46:40 GMT -5 rubytue said:

I hope you get some answers soon! I must admit, I assumed your pulmonologist ordered the chest X-ray, and missed that you hadn’t seen anyone from pulmonology yet. Trust me, I get how hard it is not to read all your reports and worst case them. But, do as I say, not as I do, and try to wait til you see the pulmonologist who can explain everything.

FWiW, I’ve been freaking out ove my lymphocyte count (low) for about a year. My onc never says anything other than “it’s fine.” But it’s been under the “low” line for 18 months. Finally asked my old onc, and he said it’s just a low normal, and not to worry. I mean, I got they weren’t concerned, but he (new onc) wouldn’t tell me why. Having full access to reports and test results is a blessing and a curse.

Thanks so much.  I learned alot just from this thread and feel more prepared.  I think I would have been overwhelmed learning at my pulmo appt but now he'll have the report and images and he can run his tests as well and give me a diagnosis.  I can also ask about preventative care.   Am glad you got your answers.  Medical stuff is so worrisome.  

Yup. This is why I like to review things beforehand. I can process all that info and emotions in real time in order to have questions. I want to digest it and then use my appointment time to focus. My old oncologist knew that and would always send me the reports as soon as he got them. 

[luckydog]

First, don’t worry until you’ve had all your tests done AND have spoken to the pulmonologist. My chart had COPD paperwork in it, no idea why, but I was diagnosed with mild/mild to moderate asthma.

Also, spirometry isn’t a complete PFT. Spirometry has you blow into a machine. A PFT has you sit in a booth so they can close the door and then you breathe into a machine while they tell you to breathe out harder and keep breathing out even though you swear your lungs are empty. And then you do it a bunch of times. Then they give you albuterol and have you do all the breathing tests again to see if you improve. Sometimes, not always, they’ll have you come another day and do the breathing tests again, but give you an irritant to breathe in instead of albuterol and see if you worsen. If you do worsen, they’ll give you albuterol till you’re good again.

If the doc starts saying copd, ask for a PFT (albuterol) and maybe even a bronchial provocation test (the irritant).

As a patient, it’s really hard to read breathing test results so wait for the doctor to explain. Hang in there.