Waiting for official diagnosis & panicking - COPD Friends

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Waiting for official diagnosis & panicking

Cheddar99
Cheddar99
21 Replies

Hi, just got a bad X-ray suggestive of emphysema. Spirometer is 80%. Have to wait 2 months to see a pulmonologist, so I don’t know how bad I am and I am having panic attacks with worry. I feel like dead man walking.

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hypercat54

Hi what does is the figure of 80 pc refer to? Were you told that was your lung function? If so relax as it means you are mild and in stage 1. x

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Cheddar99

Thank you for replying. It’s just that my internist forgot to read my X-ray until the end of the session and just casually prescribed me an inhaler and told I’d have to get more testing. Then left the room. I didn’t start panicking until I went and got my Xray copies and read the radiologist notes myself saying I have emphysema. I’d been complaining of shortness of breath for two years. They gave me a heart workup etc. Finally I insisted something was wrong and they sent me for the X-ray. But they’d been insisting my spirometer test (fiv-1 maybe?) was just fine! How could they say that when 80% is the border between 1 and 2, (I think!) Now interpreting everything myself because my doctor didn’t tell me anything and I have to wait 2 months to get into a pulmonologist- everything I see online about COPD being progressive is frightening. I’m 55, so the progressive part scares me and I don’t really understand it. I smoked until 37. Then smoked occasionally, but not addictively, after that. But totally quit 2 years ago after I’d smoked adddictively for 6 months. Its hell not knowing anything. But maybe knowing is worse.

Sorry so long.

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hypercat54

I am not sure where you are but I am in the UK and here 80 pc is considered borderline. I was diagnosed mild with an fev1 in the mid 70's 11 years ago and am still around that now. Whilst copd is a progressive disease it is rarely rapid and the chances are yours will remain stable, or only lose a few points for many years yet. It far from a death sentence when diagnosed early at your age, and my doctor told me that old age would get me first!

I have given you the link to the British lung Foundation site on here so why not put your post on there too. It is a much better used site than this one and there are quite a few members from abroad there x

healthunlocked.com/blf

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Cheddar99

Thank you! I’ll do that. You can tell I’m not from the UK? Lol

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hypercat54

We don't generally use the word internist. Nor do we usually get referred to a pulmonologist with an 80 pc lung function, well not under the NHS anyway! x

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Cheddar99

😊

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Cheddar99
Cheddar99
in reply to Cheddar99

Also thank you for the referral to the British Lung Society. I’ve checked it out and already learned a lot. I guess I was really fooling myself with that last 10 years of intermittent, light smoking.

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Roessner541

You will get it under control. I hadpanic attacks for about a year which were so bad I had to be hospitalized a few times. I had so many excaperations they had to put me on a special medicine for a year.i am off both medications now.i do meditate and do meditation when I feel a panic attack coming on but haven't been hospitalized in almost four yearsexcept for once and it was just a precaution. I still have problems breathing sometimes but IAM still trying to make it better. I hope this helps you a bit.

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Cheddar99

Thank you, it helps. I guess I’m getting used to the idea, too.

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Sparkywoo

I was diagnosed with stage 1 when I was 45. That was 12 years ago and my numbers haven’t really changed. Sure when I get colds and chest infections they’re much harder to clear and take ages. What it has taught me is to look after myself better and avoid anything I know can damage my lungs. In my opinion your ne yak health around this can be more problematic than the disease itself. He’ll I defy anyone to tell me they don’t panic when they can’t breathe properly. As has been mentioned mediation and mindfulness really help and for me exercise. That and a clear action plan agreed with your doctor eg I have steroids and antibiotics to take as soon as I get an infection. If anything this has made me appreciate life much more. Good luck

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Cheddar99
Cheddar99
in reply to Sparkywoo

Hi, thank you. Yes, I already am appreciating life more. Want to push up some travel, etc. but for now, mornings are the worst.

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Emily61

Try connected with those with emphysema try not to panic until you see consultant

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Cheddar99
Cheddar99
in reply to Emily61

Thanks.

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LORBIC

the best thing you can do for yourself is to exercise and drink lots of water. Just taking a walk at least 3 times a week is a good place to start and increase the distance and the days as you get stronger. Don't stress out of this, that will just make things worst. Two months sounds like a long time but it will be here before you know. Do your pursed lip breathing, deep breath in through the nose and blow out with lips pucked.

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Cheddar99

thanks for answering. The good news is I’m already exercising a lot. I thought weight gain was causing the shortness of breath. I felt so old. So all year I’ve done weights and swimming and stair master at the gym, determined to beat this darn cardio fitness thing. I’m so much stronger and it’s easy to go up the stairs now, but still so winded. It’s rough changing my goals knowing that I won’t be able to beat this thing.

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Emily61
Emily61
in reply to Cheddar99

Dont give up I wont ...I cant pray please programme that into your routine

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Cheddar99

Thanks Emily. You’re right. I will.

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KatherineK

I was diagnosed with mild emphysema 6 years ago, I was 56. Since then I have lost both upper lobes to lung cancer, but the emphysema is still mild. You can live a very long time and stay pretty mild, just take care of yourself. My dad had emphysema, but died from dementia.

By the way, I was an ex smoker for almost 13 years when diagnosed.

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Emily61

There is a man on here who says he has had emphysema for 26 years and still walking miles dont know but maybe ...another woman said her husband had it 21 years with no symptoms..dont know but again

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morehope

Months to see a lung doctor. I mean no disrespect to you personally, BUT MONTHS? You must live in the UK with all the joys of socialized medicine. There are fools here in the US trying to jam that down our throats over here.

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