Trying to learn how to deal

[robert7270]

I've just last discovered I have Emphysema, of course got very scared after seeing my father die of this disease. I'm still scared and want to know all I can of how to deal with it from those dealing with it.

[mrsmummy]

Tell us a little more robert7270. Do you know what stage you are at or can you say what symptoms you have?

[robert7270 in reply to mrsmummy]

All test results not in. The VA said I was moderate, I give out more easy than months ago, my breath is shorter, I not need puffers but follow Doctors Advise and take in mourning.

[robert7270 in reply to mrsmummy]

I'm 68

[hypercat54]

Hi Robert nice to meet you. If you are under 40 ask your doctor for the simple blood test to see if you have the genetic link.

Remember that you are not your father and treatments have advanced quite a lot in the last few years.

There is lots of info on the site and also between us all we know a lot too so stay here with us. x

[robert7270 in reply to hypercat54]

Thank you, information about myself, I am 68 I take no meds And never a operations. I did smoke but quit immediately hearing bad news.

[hypercat54 in reply to robert7270]

It's very good you have stopped smoking. Do you know what stage you are at and your lung function (FEV1).

If you are at the mild or even moderate stage of the disease you will have many healthy years left yet. Even if you are more severe then old age will stand a good chance of getting you first. I was diagnosed mild and 10 years later am still mild and I am younger than you!

Most people these days die with emphysema and copd rather than from it. x

[robert7270 in reply to hypercat54]

Have you studied on the stem cell approach? Do you know Anyone that has had it done?

[hypercat54 in reply to robert7270]

If you type stem cell in the search box at the top any previous posts will come up.

There is currently no cure for emphysema and stem cell is still an experimental and very expensive treatment. Besides that would be for very severe sufferers and not moderate. x

[robert7270 in reply to hypercat54]

I appreciate your reply as I said I'm sotra running scared now, maybe more so than Vietnam. Just reaching out. Your other post have been very comforting thank you

[hypercat54 in reply to robert7270]

You are very welcome. I remember joining this site a lot of years ago having just been diagnosed. We are all in shock then but stay with us as we all live with lung disease. Virtually everything I know I have learnt on here and you will learn a lot too.

Any questions or problems just post and we will all come to your aid. x

[robert7270]

All test results are not back in. The VA said I was like moderate now.

[robert7270]

In s.c. Myrtle beach and thanks

[Darceydoo]

Anyone in the UK?

[2greys in reply to Darceydoo]

This is basically a UK forum but have members from all over the world, remember the differing time zones though. The forum's UK members will "come alive" in a few hours time. I have severe COPD (emphysema) and hopefully my lung cancer is in remission, I will be going to work shortly, wait for those few hours for the UK members to to log on

[Mummsy1 in reply to 2greys]

Hi im 48 i all so have end stage Copd emphysema and is from Uk

[Roysieboy]

Hello Robert. I have got emphysema, I was diagnosed in June 2017. Once I got the right inhalers I found life a lot easier. I also go to Pulmonary rehab and have found that a great help. That involves exercises and they teach u how to breathe so as not to get anxious when breathing is difficult. I would recommend that u ask to b referred there. I do more walking than I ever have and find that helps. I will wish u all the best and send good wishes to u. 👍🤓

[lKeith]

robert7270

Hi, I know it is a great shock, had the same sinking feeling when I was diagnosed. Am still having trouble coming to terms after 2.5 years, I have had 3No emergency admissions to hospital, also spent hours on emails to/from treatment centres and this time I have to accept my situation. Do that & it gets a little easier, although you still get frustrated at what you can longer do. Shortness of breath reminds you that you are longer a busy young man. Sorry that you have this problem but the sooner you accept it you can plan around it.

IKeith

[donut43]

See the ideas on the BLF site. Keep in touch with your GP. If you can check the genetic link. and of course all the ideas and advice people can give you.

Dan

[robert7270]

What is BLF SITE? HOW TO FIND IT?

[mrsmummy in reply to robert7270]

This is the British Lung Foundation (BLF) forum. The website is here: blf.org.uk/ and you can access information by using the search box there.

[mellyme]

Hey buddy. I'm right down the road in Charlotte. Things are getting humid and very hot your way, so don't panic like I did when you realize the effects of the weather in summer. I was at Isle of Palms last summer and took a beating, but realized I can stay in a/c and still have fun. Wander out to a pool and get back in when it gets too hot to breathe comfortably. Inhalers helped considerably. I'm 59 with moderately severe emphy. Live, don't smoke, have fun, stick with this crazy and loving group, walk as far as you can, expect getting winded with stairs, eat well, did I mention don't smoke and realize we're here for one another. You'll really start looking forward to this group. They are ahead of us by 5 or 6 hours, so they know more. You will learn so much about across the pond and real football and really fun banter. We respect and honor one another and lean when we need. Talk soon.

[megshafer in reply to mellyme]

Greetings mellyme!! Your southern humidity....has worked it's way north...it is most miserable. But....we are to have some beautiful weather, after quite a few days of rain. I believe we might hit the links!!

Take good care of you mellyme!!

Megxx

[mellyme in reply to megshafer]

Looking out for you and good link weather, dear Meg. Hope life is treating you well. Good air as we head into the heat. xx

[Janzo54]

Welcome Robert!

Im fairly new on here too. I have Mod COPD my mum had Emph.

The things that really help me are taking meds, staying calm and positive, walking as much as possible, and hobbies and things that distract you in bad days-could even be a puzzle. Joining a singing group is good for lungs and helps with socialising.

Ive just had a neck fusion operation done-I spent four years being too worried about my breathing to go for it but Im doing great and 5days post op now- I have found that there is nothing to fear except fear itself and when we do it loses all power!!

Really hope you will feel supported and get the help you need in here.

Good luck!

Janzo 🙂

[robert7270]

Thank you for these words of encouraging me