Not copd: 13 months ish of thinking I... - British Lung Foun...

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Not copd

keith9876
keith9876

13 months ish of thinking I had this dreaded illness I get told today I don't.

Just had my visit with the specialist at hospital and did the spiromitry test which was apparently perfect.

She said it's probably asthma but had referred me to the cardiologist to check that part of me again.

One good thing has come from this last year though, no more smoking.

23 Replies
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Hope you stay well Keith. Take care xxxxx

keith9876
keith9876
in reply to sassy59

Thank you 😋

mmmmm that sounds very odd. Were you not ever previously diagnosed with COPD ? You just thought you had it?

Did your specialist ever organise a CT scan for you? It is usual this happens once referred to a respiratory specialist.

It is possible to have a very good spirometry / normal result and still have lung damage, a normal spirometry result doesn't mean lung function is necessarily normal or healed. Spirometry is just one measurement indicative of how the lungs are functioning.

Just me thinking out loud, take no notice if you are happy with how you are breathing and functioning generally, as well as if having had a diagnosis of COPD previously.

Good you are being checked again in cardiology to be sure. Great news if you don't have COPD. Fantastic be proud you are now smoke free :)

Best wishes for good results all round.

keith9876
keith9876
in reply to Bkin

Was diagnosed 13 months ago, now they're telling me it's asthma or my heart, to be fair I'd rather have the asthma than COPD though after watching my poor mother go down hill with COPD.

I'm still constantly breathless I was even puffing and blowing half hour after the Spiro lol

Shazrab
Shazrab
in reply to keith9876

Hi I would definitely seek another opinion just to be safe and sure of what’s actually happening, the first specialist I saw made me uncomfortable and didn’t believe I even had asthma although I’d had it for over 20 years he was so sure of himself but I was even surer that my life had changed dramatically and I was going down hill quickly my gp sent me to another specialist to cut a long story short I had over 20 blood clots in my lungs, chronic bronchitis,(copd) a lot of scarring and an infection at the bottom of my lungs, I knew something was going on but didn’t expect all that also I get new symptoms that I don’t know what’s causing them and had a bad infection that lasted November to April now it’s back iv had it since October. People kept telling me not to give up on fighting for answers and the best treatment but I never had the strength luckily my hubby done a lot of taking to drs . There was one thing my mum said to me ... remember these drs nurses whoever are all only human we make mistakes that I wasn’t to be scared or nervous of any them ( I am ) if I’m getting sicker then someone got something wrong she also reminded me that sometimes people have personal problems or may even have partied too much or just we’re unwell themselves to be nice but be firm I’ll never forget the words and my mum was right. I think it was probably the best advice she ever gave me. Sorry to have went on there I didn’t mean to it’s just I really hope you are getting the best treatment and I can’t understand why they say copd then asthma, I do hope your having easy breathing and keeping well please don’t give in to easily by trusting others with your life. All the best of luck with your heart I pray it’s all healthy 🌺🌺

Pinky29m
Pinky29m
in reply to keith9876

I also was diagnosed with asthma and enfisema but the day before my mother died I was released from the hospital and they said I have to be on oxygen that I have COPD and you know what you could become dependent on oxygen when I if I take it off for a while it goes down to like 78.3% good so now I am I am a dependent on my oxygen I have a big tank with liquid oxygen and I concentrated which goes constantly and sometimes I just don't use the water bottle cuz I will stay in bed for days or sleep for 3 days and I don't want the water to empty air and greed nothing it's just I don't understand how one day I go to the hospital and I have asthma and I got home 5 days later with oxygen and told a COPD I don't know what to believe it was four and a half years ago and the fact that is an incurable disease scares me and I always wonder if I ever live to see my grandchildren grow so it gets me very depressed I don't go out much and when I do after 2 hours I'm so tired but I try on good days

I try try to get a lot done n I feed off other people's energy n people think I'm fine. I did get 1 ticket to see the Rolling Stones.might be their last .I only got 1 cause I have to pay. So I will go alone n hope I make it.

Great news Keith how Where you diagnosed with copd 13 months ago who actually said you have copd Take care xxx

Had x-ray and Spiro test originally for diagnosis when I went in for chest pains

That’s great news. Hope you continue to stay off the cigs and get adequate tests.

That’s good news. Take care of yourself 😊

Unfortunately you will have some sort of problem whether it be asthma or COPD due to the smoking but hey you will never make a better choice and in some cases the most difficult thing to do in your life than to give up smoking,that alone is a major plus,well done and keep up the good work.

Pinky29m
Pinky29m
in reply to Jollj

I I have COPD do to people around me smoking I have second hand COPD everybody in the family and in the car it's like even before my mother passed away if she would live to hurry up and get out to get us have a cigarette as you can smoke in my car and she says she's stand by the door and blow up back into the car but she lived for cigarettes and she died from bladder cancer which is a painless she was 88 we started here on electronic cigarettes but she was blessed to live 288 and she smoked three packs a day at one time and I never smoked my kids never smoked I got the gift of a disease that's in curable I always wondered wby me .I was the one who took care of everybody in the family my mother my father n my mom was opposite not hands on didn't visit me tHRU many surgeries. I was a better daughter than she was a mother n admitted so . she died n never knew i was sick cause she died the next day I miss her so much she was my best friend n a'll she had was emphazema. We all are dealt

a hand of cards n it's about how we play our hand

Jollj
Jollj
in reply to Pinky29m

I know what you are going through,I too never smoked but diagnosed COPD,both my parents and my older brother were heavy smokers,sometimes you couldn't see for smoke when all three were at it in our little terraced house,so yes I sympathise and you are quite correct it's the hand you are dealt with and just have to get on with things,good luck and thanks for sharing your unfortunate circumstance.

What a wonderful outcome. You must be so relieved.Good wishes that your health continues now without the added worries of it being something worse than it is.

Congratulations! Take care!

-Angel

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How wonderful I wish I had that news I'm stage 4 emphysemic runs in my family I'm so pleased it's not copd for you and we'll done for stopping smoking I wish I could all the best in your life healthy 😊

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Great news Keith. I am very pleased for you. Wishing you a healthy life 💐

You must be so relieved, I am yet to see a specialist so hoping for the same outcome as you . I have never smoked.

keith9876
keith9876
in reply to Louie60

Hope you get good news 🙋

I am happy for you but hope they get to the cause of your breathlessness.

God luck.

keith9876,

I am glad you were able to quit smoking, and I truly hope she is right and you do not have emphysema. I remember when I got told that, I was "dancing" in my car all the way home.

I was first told by a general surgeon almost 6 years ago that a chest x-ray showed a "suspicious nodule", so my colostomy reversal surgery was postponed. He also asked me if I was aware that I have emphysema??? I had to have a ct scan, then a pet scan, then surgery for lung cancer. The thoracic surgeon also said I have emphysema and should be under the care of a pulmonologist. My first pulmo said no copd/emphysema because my pulmonary function test was normal, no signs of obstruction. He did say my lungs were "stiff" with absolutely no explanation. I later learned that my lungs were stiff because I was retaining CO2, which is a side effect of emphysema.

My second pulmo said maybe adult onset nighttime asthma, but to keep using my inhalers. He did do a sleep study and diagnosed me with sleep apnea.

When I saw my primary care, I told him that I don't have emphysema, my pulmonary function test was normal, there is no obstruction/restriction in my lungs. He went to his laptop and pulled up the images from my latest CT scan and said "I'm sorry, but he (my pulmo) is wrong, you can see the lung tissue damage in the pictures". He said I definitely have emphysema. Needless to say, I found a new pulmonologist. At this point the PFT showed that there was some restriction in my breathing, but she said she couldn't be sure if it was copd or from my 2 lung lobes being removed. She said she would have to see the surgeons biopsy report before making a definite diagnosis. The surgical report said emphysema. 😞

Apparently (at least here in the states) you are not considered by medical standards to have copd if your PFT is normal. That does not mean you do not have emphysema, asthma, bronchiectasis, it just means you do not currently have any obstruction in your lung function.

FYI: COPD is an "umbrella term" for many conditions/diseases that effect the lungs. Emphysema and asthma both fit under that umbrella. Doctors here won't say you have COPD unless the PFT shows lung obstruction or restriction.

Wow, what a nightmare for you, I do plan on trying to get some answers as to why I was told I had the copd in the first place.

My breathing isn't great but to be fair I really haven't done much in the last 12 months, I'll be much happier with an asthma diagnosis as I watched my mother slowly die from COPD related illnesses and I had zero motivation knowing what it can do.

I will keep you in my prayers.

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