Help with COPD/Emphysema

[viv4BONNIE]

I’ve been diagnosed with COPD / Emphysema would like to talk to others with the same is there a COPD site like this Asthma UK Community if so how do I contact it?

[Damon1864]

Hello , yes there is a site look for the British lung foundation. It will be lovely to have you join our group. Love Bernadette 😳 xx

[hypercat54]

healthunlocked.com/blf

[challny in reply to hypercat54]

I too was diagnosed with emphysema and "some" asthma. Have I been going to the wrong site? Also, my illness was diagnosed though ex-rays and breathing tests. Never had a CT scan. Is that normal? But I was diagnosed by both a GP, first, and then a pulmonologist.

[hypercat54 in reply to challny]

You have been on the BLF site 18 days ago! The copd site you are on is fine but BLF is a much more active group.

I have copd but never had a CT scan either and was told they aren't given unless your diagnosis doesn't fit with the copd umbrella. I was diagnosed by a respiratory nurse with a spirometry. I presume you have had one of those? x

[challny in reply to hypercat54]

Yes, hypercat54, I was diagnosed with a spirometry test and chest x-ray by my GP. He then sent me to a pulmonologist at the same hospital, saying that she would be better at designing an optimal treatment plan. The pulmonologist then performed the same tests, spirometry and x-ray, I guess just to confirm the GP's findings. She told me I had emphysema (moderate) with "some' asthma and prescribed 3 inhalers, Symbicort, Spiriva and Ventolin for rescue. They don't seem to be doing much for me. But it's hard to tell, because if I WASN'T taking them perhaps I would be feeling much worse. On my last visit, the lung doctor said my condition was "mild/moderate." I thought, oh, lord, if this is mild I don't want to see what's around the corner. Thanks for the advice on the BLF hotline. I guess I don't quite understand the destinations on this site.

[Spikedog66]

Hi I have COPD and asthma and use this site if I can help you in anyway please get in touch diagnosed in 2010 still alive and kicking😊

[Jeb60]

Hi there, I too have recently been diagnosed with COPD and Emphysema and have been looking for support also. I am so afraid, but I have this condition now just not sure as how to manage my feelings.

[Damon1864 in reply to Jeb60]

Hi Jen just carry on living your life as normal. Good diet, exercise and if you smoke please try to stop. You will learn when something is wrong, butnever be afraid to ask for advice. Talk to your GP and nurse, they will help and we are always here for you.xx Bernadette 😳

[Jeb60 in reply to Damon1864]

Thank you so much. I was recently told following a CT scan. Following this I had a lung function test and will get the results next Wednesday. I am so scared of what they will say in terms of how bad it is and my life expectancy. I am hoping this forum will help me get through this. I stopped smoking in 2007, so one less thing for me to worry about.

[Damon1864 in reply to Jeb60]

Don't worry about it all, I don't know what stage I'm at, and to be honest I don't want to. I would only make myself really ill worrying about it. I know it's hard but staying positive helps, if you ever need a chat I am always here, so is everyone else on here. You take care. Love Bernadette 😳 xx

[Superzob in reply to Jeb60]

Hi Jeb Think you might be looking at this the wrong way round. The purpose of the tests is to determine the best treatment, not how long you are going to live (which is as long as a piece of string). If you feel OK, then you don't need to worry at all; if the condition causes you to feel unwell, then you need some medication to treat it, which the tests should help identify. This is all about making you as well as possible - that's the best way to think about it.