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New (Old) boy!

Hello everyone. I hope to pick up a few ideas/tips here and maybe sometimes I may even be able to give some advice too, having had COPD since 2005

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D1a2

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24 Replies

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O2Trees6 years ago

Welcome D1a2. Im sure you have lots of expertise - Ive had copd since 2000 and you certainly pick up a lot along the way. Look forward to hearing more from you

Vonnie50 in reply to O2Trees6 years ago

Hi I am new to my diagnosis of emphysema and see you have had copd for 18 years do you have any tips please as I am terrified?

D1a2 in reply to Vonnie506 years ago

Well you seem to have started off on the right foot by facing up to the fact that you have something wrong, many (too many) people ignore the problems and just hope things will go away and get better on their own, they don't !

You do not say how bad or mild etc. your condition is, and I do not know very much about emphysema, in fact the only thing I think I am right in saying is that everyone who has ever smoked has emphysema.

Please try not to get yourself too worked up about your condition until you have been given all the facts etc by a specialist doctor.

Vonnie50 in reply to D1a26 years ago

Hi they say quite mild but not told me a stage as they say it just scares people. I just started the gym and singing again as think that will help my lungs too. Gave up smoking 4 years ago but obviously damage done 😭 . Any tips at all ?

D1a2 in reply to Vonnie506 years ago

You have done the main thing, by giving up smoking. I was told that if I did not stop (back in 2005) I would be walking about with an oxygen tank, I gave up there and then! I still ended up with having a oxygen bottle, but not until last year. However I also worked in the film industry in the wood mill which of course is not a great place for healthy lungs!!

But I do not have emphysema, the term COPD covers many things.

I have been to the gym 3 times and it will help you.

Please try not to worry too much, if they say its 'mild', they mean it!!

Vonnie50 in reply to D1a26 years ago

Thank you . You say you have been to the gym 3 times do you mean in total? Or this week ? What do you eat ? And how do you keep your immune system well please ? Sorry for all the questions

D1a2 in reply to Vonnie506 years ago

Sorry I did mean to say/write pulmonary rehabilitation gym. It does help to be as active as you can. I try to eat a 'balanced' diet (whatever that is?!) fruit, I also take multivitamins

One of the things you will be told at the gym is how important drinking a lot of water is every day

On digging out my med notes, I see that I do have 'extensive emphysema' along with a few other things for good measure!!

Vonnie50 in reply to D1a26 years ago

Thank you for the reply sorry you have other issues too. I have a couple . I find drinking water the hardest yuk . Hope you stay healthy and happy 😃

D1a2 in reply to Vonnie506 years ago

Well they reckon you should drink a couple of litres a day, (tea and coffee does not count)if I am honest I never drink that much myself, too busy with tea and coffee!. I guess you could always try the flavoured bottled water, (not sure if they will say that is alright) you can ask when you start pulmonary rehabilitation gym. You will have an hour in the gym and then they give a lecture about different subjects dealing with COPD for about an hour.

Another plan, mix the water with whiskey, they call that the alexia of Life?!!

Vonnie50 in reply to D1a26 years ago

Ha I don’t drink at all. I do have flavoured water but still not easy drinking that much. I hope you have a fantastic weekend 🤗

O2Trees in reply to D1a26 years ago

No, D1a2, only around 20% of smokers get copd/emphysema. And around 20% who have never smoked get it too as it can be acquired through environmental, occupational and hereditary routes.

O2Trees in reply to Vonnie506 years ago

I have emphysema, Vonnie, and was diagnosed at 44% fev1, i.e. moderate and am now at 33% last time I had a PFT done, around 3 months ago. I also have asthma (since my mid 20s) and more recently bronchiectasis which many here have. Just out of hospital having had double pneumonia and type 2 respiratory failure and struggling to get back to normal, but it will be a long while.

Before this episode I had managed to keep myself well for three years but that time had to end sometime! I was only using ambulatory oxygen for walking and 'stepping'; never needed in my home. Also I lift weights and my O2 saturation stay the same without needing oxygen. At the moment, back home from the hospital, I am on long term oxygen, just half a litre a minute, and starting to not need that.

We are all different - some who are mild can get quite ill, while others who are stage 4 are still out there working for a living. There are many on here at all different stages of copd and other lung diseases. Some are newly diagnosed and wanting information, the others have accumulated loads during their time living with it. Feel free to ask any questions you have. Some people cope by getting as much info as possible, others prefer not to know the numbers or other stuff come to that. Im one who feels that knowledge is power.

Exercise and diet will help a lot - get into an exercise programme. Many here do pulmonary rehabilitation, which is evidence based to help our functioning. Try and keep away from infection and pollution. Tell your family and friends to stay away if they think they may be sick. If you are more anxious not knowing stuff, then tell your healthcare people that and say you want to work in partnership with them. As I say, we are all different. Good luck!

Vonnie50 in reply to O2Trees6 years ago

Thank you for your reply I am on waiting list for pulmonary rehabilitation hope it is quick. Hope you recover very soon. 🌹

O2Trees in reply to Vonnie506 years ago

Thank you. Cross fingers your PR referral comes good very soon.

Vonnie50 in reply to O2Trees6 years ago

Yes I hope so still finding all this scary stuff

D1a2 in reply to O2Trees6 years ago

Well I got out my med records etc. and like you it seems I do have extensive emphysema with fibrosis, if I am honest to do not like to read all my notes too much, I just go by how things are on the day! My COPD is Gold but I have a heart problem now due to the COPD, never did do things half way!

We seem to travel down much the same road, I had double pneumonia a couple of years ago, 10 days in hospital and I think I was lucky to get out to be frank. I seem to have started downhill from then, last year 3 attacks of pneumonia then a blood clot in one leg, lost my best friend (my dog) put on oxygen tank for when I needed it...but now have to be on it for at least 15 hours day. May the Force be with us!