Length of time

[Vonnie50]

Just want to know how long have you all had Emphysema

[Feelingblessed2013]

I was diagnosed 5 years 2 months ago. It was March 2013

[Vonnie50 in reply to Feelingblessed2013]

Hi Hun how are you doing now ? Nice to hear from you ?

[Feelingblessed2013 in reply to Vonnie50]

I'm doing. You know, not healing fast enough to suit me. How are you?

[Vonnie50 in reply to Feelingblessed2013]

Why are you ill st the moment ?

[Vonnie50 in reply to Vonnie50]

You had surgery I believe

[Feelingblessed2013 in reply to Vonnie50]

You are correct, lost the upper right lobe to cancer 5 weeks ago today. Still have discomfort and swelling on that side, and get sob pretty easily.

[Vonnie50 in reply to Feelingblessed2013]

Really hope you heal quickly x

[Davidatp]

I’m not really sure. I was diagnosed with NSCLC in 2009 so it was probably sometime around then, which would be around 9 years.

[Vonnie50 in reply to Davidatp]

And how are you now ?

[Vonnie50]

Well I thought if I don’t ask I just can’t get it out of my mind. Plus I met a lady today that was diagnosed at 42 and is now 78 and is still mild her advice was eat healthy, keep walking and stay away from ill people plus have fun. She honestly looked great

[Hidden in reply to Vonnie50]

Wow so it can be stable for years was it emphysima

[Vonnie50 in reply to Hidden]

Yes it is Emphysema

[Hidden in reply to Vonnie50]

That is amazing and has given me such hope amazing

[Vonnie50 in reply to Hidden]

Me too I start pulmonary rehab soon and have lots of questions as I am very anxious still x

[Hidden in reply to Vonnie50]

Vonnie diagnosis end of May asthma and emphysima..And spiral into depression. I am top end moderate consultant said mild and I lost all hope. Rehab is brilliant

[Vonnie50 in reply to Hidden]

Bless you. I find it hard that all these years and no cure at all. I had stopped smoking 5 years before diagnosis 2 years ago on my 50 th birthday. I am alone and have two grown up children that think it’s nothing and say don’t moan or worry . Looking forward to learning a lot to help me. Also at lung group the man that help runs it has stayed mild over 24 years . He said no special diet just keeps his mind busy x wish you the best x

[Hidden in reply to Vonnie50]

Has he got emphysema or asthms

[Vonnie50 in reply to Hidden]

Emphysema

[Hidden in reply to Vonnie50]

What stage are you...and honestly just whst I needed to read

[Vonnie50 in reply to Hidden]

Originally diagnosed with asthma and Emphysema like you. Now saying Emphysema only and mild

[Hidden in reply to Vonnie50]

Brilliant may you be the next to say I have mild for 21 years

[Vonnie50 in reply to Hidden]

Thank you and you too x

[joyful4u in reply to Hidden]

Emily, glad you're getting more information. It does encourage us & give us hope that the things we imagined were not necessarily right.

[Hidden in reply to Vonnie50]

Hi the 78 year old was she on oxygen and I do believe it can be stabilised but friends kept saying I was in denial

[Vonnie50 in reply to Hidden]

No oxygen at all

[Hidden in reply to Vonnie50]

Amazing first I had to read it twice amazing...

[Vonnie50]

I agree I think more time on diagnosis is needed to explain things to us as I have not slept panic attacks and worry myself sick with it. I rang British Lung Foundation too and they agreed with the lady I spoke to also adding keep your legs strong and if you have hiatus hernia like I do treat the acid reflux as can cause chest infections too

[Vonnie50]

And you please I am following you now we can learn together best wishes

[Ksb6420]

I was diagnosed in 2003

[Vonnie50 in reply to Ksb6420]

May I ask how are you now 15 years on ?

[Vonnie50]

Sorry was not sure where to post it 🤭

[Ksb6420]

Went from mild to moderate and now between moderate and severe.

[Vonnie50 in reply to Ksb6420]

Did you suffer a lot of infections ? Any other illnesses

[Ksb6420 in reply to Vonnie50]

No thank goodness, no infections or pneumonia in the last couple of years! I do have osteroarthritis and fibromyalgia. My back is a mess even though I had surgery a couple of years ago.

[Vonnie50 in reply to Ksb6420]

Don’t understand why some progress as you have done all the right things lung nurse said most lung loss is at the beginning and if eat well , keep fit and don’t smoke or do ecigs you should stay at same levels 😪

[Ksb6420]

I do ok. The hot and humid weather in Ohio now is really bad for me. Haven't been outside now for 5 days. I do use oxygen at night and when I go shopping or going for a walk with my granddaughters. There are some activities I can't do anymore...the only one I really miss is gardening. How are you?

[Vonnie50 in reply to Ksb6420]

Not to bad at the moment finding the diagnosis scary as some people progress quickly others don’t . Have 2 grown up children not really understanding how scared I am and live alone for last 4 years x

[Vonnie50]

So scary this confusing information everywhere x

[Vonnie50]

Me too x

[Ksb6420]

I smoked for a few years after I was diagnosed. But I knew I had it before the doctor told me. My father had it..my older sister and my younger brothers also have it, but believe it or not it is not genetic. You can slow the process by not smoking, exercising, eating healthy and taking medication but sooner or later it will get worse, but that could be a long time from now.

[Vonnie50 in reply to Ksb6420]

I hope your right and my specialist thinks there may be a genetic link

[Ksb6420]

You are doing great, now I am jealous! I was diagnosed when I was 47 now 62. Yes I am worse now but still alive and breathing. Like you I can't really complain.

[Ksb6420]

I am still doing my own cleaning, washing clothes and walking with my granddaughters using oxygen. This year I had to give up gardening which I really miss. I still get around!!!

[Vonnie50 in reply to Ksb6420]

Do you go to gym still or anything like that and why oxygen were your says low ? Sorry to bombard you

[Ksb6420]

My oxygen at night when I slept went into the 80' and stayed there. I don't go to a gym, I love to walk if the weather permits, I also have a stationary bike. You are not bothering me, I wish I would of had someone to talk to.

[Vonnie50 in reply to Ksb6420]

I know I think the lack of support is awful. I even suggested starting a coffee and chat in my area but lung foundation said no. I was brought up by my nana who passed in 2003 and she was my world. So no one to talk to and get a hug from or support. Wish you had the support you needed too x

[Ksb6420]

I am married and I don't think my husband has a clue what I go through, so it is nice to talk to others

[Vonnie50 in reply to Ksb6420]

Yes the old you look ok so how are you so ill ?ridiculously you need to have your limbs hanging off so someone understands

[ladycamper]

I was diagnosed in January 2012

[Vonnie50 in reply to ladycamper]

How are you doing please?

[ladycamper]

I have good days and bad days but I keep pushing to do things Today was the best day in the last three days.

[Vonnie50 in reply to ladycamper]

That’s good glad you did. We’re you diagnosed at a early stage ?

[ladycamper]

no I was server

[Vonnie50 in reply to ladycamper]

I’m glad your on the group now. Getting good advice from everyone they are nice people x