Pulmonologist

[beeperoni]

Well, had my first visit with the pulmonary Dr today. He said I do not have emphysema nor bronchitis, but I do have COPD. He said you can have COPD without the other components. He said, in general, COPD is any airway narrowing/inflammation, and this can be cause by smoking or other environmental irritants. Good news, no other disease, bad news I still have COPD...

[Hidden]

I thought copd and emphysema were the same disease. Maybe I am mistaken.

[beeperoni in reply to Hidden]

I asked him the same thing and he said no. He said emphysema can be a factor of COPD, but not always. He said he reviewed my CT's thoroughly, and found nothing but airway narrowing. He said emphysema is a destruction of the air sacs, but not everyone gets it. His name is Dr Kinsellsa, originally from Ireland, now in US...he seems really nice and thorough. Anyway, I'm still stage II COPD at 41 and it sucks.

[peege in reply to beeperoni]

Hi, just to say that several members who've worked at it, taken up exercise etc have managed to turn their moderate copd into mild so good luck in doing that. P

[beeperoni in reply to peege]

Hello P,

I didn't mean your asthma is reversible, I just meant that they don't always include "all" asthma under the COPD umbrella anymore because some can be reversed. I will be starting PR the week after next, so I'm hoping I can improve my FEV, or at least get it to where it wiil be stable.

[peege in reply to beeperoni]

You will learn lots on how to manage, improve and have a fulfilled life Beep. All good wishes on turning it into mild.

I've never heard of any asthma being reversible though.

I'll ask my specialist nurse on Monday.

PR certainly improved my health, strength & understanding of lung issues and possibly prevented my asthma becoming copd.

Best, P

[beeperoni in reply to peege]

I doubt with a 64% I can get it up 70%, but worth a try. Anything above 80% is mild.

[aberdeenman in reply to Hidden]

hi brooke I have copd and emphysema, from what consultant told me, copd is more to do with airways and emphysema the lungs.

tam

[beeperoni in reply to aberdeenman]

Hi Aberdeen

That's almost more or less how my Dr summed it. He said COPD is general term for airway narrowing/inflammation, but can get other diseases of the lung to go with it. He said you could have emphysema or bronchitis and not have COPD also.

[Nanny1086 in reply to aberdeenman]

Hi ,I have asthma,Bronchietis ,emphasyma ,copd ,,,,,,,arn't I the lucky one ,,,,,,,as long as I keep breathing that's all I'm bothered about ,,,,copd is a big umbrella and covers a whole lot of problems ,

[Hidden in reply to Hidden]

Copd is the umbrella term for both emphysema and chronic bronchitis. and sometimes things like asthma are included. It is not a disease in itself.

Chronic bronchitis is damage of the upper airways and emphysema is the bottom of the lung. Most copders have both with one of them being the primary one. x

[beeperoni in reply to Hidden]

I failed the spirometry with an FEV1 of 64% and FEV1/FVC ratio of 70%. Dr said both my CT scans and cxr's were clear and showed nothing. He said I definitely had COPD based on SOB and clinical diagnosis of spirometry results.

[Hidden in reply to beeperoni]

Scans and x-rays only show if there is something else going on besides or instead of the copd ie lung cancer or another lung disease. With your FEV level therefore you have COPD. If he said it is not emphysema it must be only/primarily chronic bronchitis. x

[beeperoni in reply to Hidden]

I thought chronic bronchitis showed on cxr's? They said my lungs sounded clear too

[Hidden in reply to beeperoni]

No it doesn't. I think emphysema does though. x

[rubyred777 in reply to beeperoni]

64% isn't bad. Only 16% from being normal! You should feel pretty good. Do you use inhalers?

Rubyxx😊

[Hidden in reply to rubyred777]

No it's 36% Ruby. They work it out taking a group of people of the same age, weight, sex etc. and the figure they give you is a percentage of that. If he was normal he would have 100% lung function. x

[ck101 in reply to Hidden]

There is such a thing as the lower limit of normal, not 100% I might add.

[Hidden in reply to ck101]

Yep quite right ck101. I don't know the exact figures so didn't quote them. But I would guess that anything over 90% would be a lower limit of normal? x

[beeperoni in reply to rubyred777]

Hi ruby,

Yes, I use spiriva and ventolin inhaled, but they don't feel like they work. Dr said give it time. I've been on the spiriva for 5 days. And 64% is moderate.

[beeperoni in reply to Hidden]

Hi Coughalot

You seem quite familiar with COPD. If you don't mind my asking, How long have you had it, and what stage are you?

[Hidden in reply to beeperoni]

I was diagnosed around 5 years ago now beeperoni. I was as low as 63% on diagnosis but am now 78%. I have been on the site quite a long time and picked up a lot from others. I have also done a lot of reading about it. I am nowhere near an expert but do know certain things. x

[beeperoni in reply to Hidden]

63% to 78%, wow that's awesome. How did you do that. I could use some tips.

[Hidden in reply to beeperoni]

Ha ha it's not as good at it appears I have had asthma for many years then finally was diagnosed with copd. Once I started on a new regime of meds my FEV1 shot up and the copd nurse reckons much of it was poorly controlled asthma.

At my last review my FEV1 did show 78% for copd and 75% for asthma, but I reckon that must have been a good day

When I started taking the meds my FEV1 went up from 63% to 72% and this is what it was the time before.

So I think it is a combination of luck, the right meds and having no other serious health issues which might affect it. Oh and luck...

Not much help to you I'm afraid! x

[beeperoni in reply to Hidden]

Nope, not much to me. Asthma can be chronic, but is also more controllable and can be reversed. My FEV stayed the same, and my FVC only went up 1% during the post bronchodiolater test 😞 I'd rather deal with asthma me thinks.

[peege in reply to beeperoni]

Er, I'd like my asthma to be reversed, however that's just not possible. Only managing it can help

[Hidden in reply to peege]

Asthma cant be reversed It gets worse over time because other breathing conditions don't help

[peege in reply to Hidden]

As I said in above replyto the original poster 4 years ago!

😃

[ck101]

Sorry to hear that. Stay well, eat well, be positive and keep up the excercise.

[beeperoni in reply to ck101]

Yep, basically what Dr said.

[Hidden]

I thought COPD was a blanket term for Bronchitis and/or Emphysema.

This article from BLF might interest you:

blf.org.uk/Page/what-is-COPD

[Hidden in reply to Hidden]

It is poems. x

[ck101]

You can live a normal life with this, my sister a never smoker has the exact same function as you. She never complains and feels well.

[Offcut]

The way it was explained to me. COPD is as it states an obstruction to the breathing. inflamed/narrowing etc. emphysema is damage to the lungs.

To make it more confusing I am RLD which is a restrictive condition. Which is lacking elasticity in the lungs.

copd.about.com/od/copdbasic...

Be Well

[katieoxo60]

Hi Beeperoni, not sure I agree with your doctor. But it seems many doctors don't know the ins and outs of COPD. It is obvious you have an airways disease and a lot of them are put down to COPD. COPD is an illness, is chronic and is not a name for all airway narrowing disease. BLF help line can verify this and you as a patient have a right to a clear defined medical diagnosis so you can be given the correct treatment. A specialist in respiratory disease is what you need, plus possibly test to determine the cause. Even Asthma causes narrowed airways. Having COPD may alter the way you lead your future life so you need to be prepared for that and to make changes. Hope you manage to read the link sent to you and hope you keep us up dated on your progress with diagnosis. Best wishes

[beeperoni]

Thanks everyone,

This all still so very hard to understand and grasp. I'm only 41 and never smoked more than a pack a day (still too much I know). I hear so many horrid things and this scares the crap out of me. Regardless of what disease it is, I have COPD. I just want reassurance that it could be possible for me to live long enough to watch my 11yr old grow to be a man...but some stuff I read makes me think this will not happen. I am petrified.

[katieoxo60 in reply to beeperoni]

Don't worry too much about the future, I have COPD ,was diagnosed seven years ago and have had no marked deterioration in my condition with treatment. Take care of your self and you will be around to warn your grandchildren about this disease in years to come. Get as much info as you can and decide what is best to fit your lifestyle and keep you well, different treatments suit different people even though we have the same illness on paper, plus the stage we are at makes a difference. You have been caught early which is good. Have a relaxed day and enjoy your family. Then try to build up a good relationship with your doctor so you can work together to keep yourself well with his help.

[beeperoni in reply to katieoxo60]

I don't think I can say mine was caught early cause I'm stage II. But, I'll be starting pulmonary rehab on Tuesday so hopefully that will help. My body is a little reconditioned due to abdominal surgery a month ago and I couldn't do anything physically. My FEV1 at diagnosis on May 22 was 64%. For my age I don't think that is good at all.

[ck101 in reply to beeperoni]

I have just checked the LLN using the link I posted and for my age and height the value is 72% of predicted.

Don't get hung up on the numbers, it's how you feel & right now you are probably at the lowest point having been just diagnosed.

Things will improve.

[katieoxo60 in reply to beeperoni]

Take care at PR , it will improve your breathing results if you give it time. Don't go too fast or you will make yourself ill as it is not long since your surgery. Take care and every best wish . Your right about your FEV1, but hey you just had an op and inactivity reduces it as I understand, it usually takes six weeks minimum and longer for muscles ect to get back to normal, don't rush.

[Hidden in reply to beeperoni]

What is fev my consultant hasn't explained how it works says I'm 50% had Copd and Asthma for about 20 years she do explain much to me.

[Hidden]

You will probably see your grandchildren, never mind see your son grow up. Today is the first day of the rest of your life. Eat a good healthy diet, keep to a decent weight, exercise consistently and don't smoke. A lot of people with COPD don't even go to see their GP until their FEV1 is below 50%. Your FEV1/FVC at 70 is normal. Way to go man! Forget the COPD tag - it's just a name not a life sentence

[beeperoni in reply to Hidden]

Thanks Hick,

Its just that I hear so many different things that it scares me. I lost my mom when she was just 43 (15yrs ago). I was 25 at the time, but age doesn't matter when you lose a parent. I don't know if my mom had COPD. She smoked and coughed a , but she also worked in a wood factory and breathed in a lot of wood particles (she worked the tail end of a rip saw), so I'm sure that contributed to a lot of her breathing problems. I am also being tested for the Alpha1 later today just to rule that out. I appreciate your positive outlook though, it does ease the mind a little and gives me some hope.

[AmethystAngel in reply to beeperoni]

Hi Beeperoni,

I have just recently been diagnosed with Sarcoidosis and fully understand when you say that some of the things you have read scare the hell out of you.

I think it's a stage we must all go through when we are told we have a problem with our lungs.

Try and stay positive (words I need to follow also) as the main thing is the condition has been picked up and we have a good NHS behind us with some great medical expertise. Easier said than done to stay positive I feel you might now be saying as the same is going through my mind and I know that my emotions have been up n down like a yoyo this past week n all I want to do is cry but am holding it in.

Thankfully we also have this great website and all the people who are on it to offer support to one another... Thank you to everyone on here you are all stars x

[Hidden]

-_-

[ck101]

Here you are, with this calculator you can calculate the LLN for your age and height..

cdc.gov/niosh/topics/spirom...

[Jjude in reply to ck101]

what is LLN?

[beeperoni in reply to Jjude]

LLN is the GOLD standard for Lower Level of Normal. This always for some play room when determining COPD as not all individuals will have equal spirometric values.

[Jjude in reply to beeperoni]

thank you, though at the moment the numbers don't make much sense to me, I will learn in time. xx

[Hidden]

From my understanding copd is either emphysema or chronic bronchitis. Emphysema effects the alveoli these are at the end of the bronchioles. They are what transfer oxygen in to blood stream. if they are damaged that is why dclo is reduced. This damage would be seen on a hrct.

With chronic bronchitis early stage may not be seen on a scan. If it is it shows up as thickening on the bronchial tree. If iteffects the small airways it may not be visible as a hrct will not show on small airways less than about 3mm.

Surely the consultant should request a lung function test. This specifies . Dlco, fvc,fev1,rv,erv,tlc,vc,ic&irv plus fef 25/75. Rv & tlc if high means copd. If dclo is low as well it would be emphysema. If dlco is normal or just slightly raised then its chronic bronchitis.

[beeperoni in reply to Hidden]

My new pulmonary Dr did order the other tests, I get them done on July 9. I have only completed the spirometry, which was done by my GP. I'm sure I'll know more then...but right now, my CT's and cxr's show nothing.

[Hidden in reply to beeperoni]

Thats good news on xray and ct. A ct would definately have shown up emphysema changes before you would have had any symptoms.

[Hidden in reply to Hidden]

I have had all the test done. Have Copd and Asthma for about 20 years my consultant tells me nothing much when's as,etc yesterday what stage lungs at, she said 50% don't know what fev is explained fev to me x