New with questions

[Granik]

Hi I am new here from NZ. I have been diagnosed with COPD for many years but over the last couple of years I have had pneumonia a couple of times (not been admitted to hospital). Recently I had a chest X-ray which showed I had Bullae in my right lung so had a CT scan which showed my COPD is in the advanced state, but I am still very mobile and able to walk 3 to 5 Kilometres a day, only on Ventolin medication for the COPD. I am due for another X-ray in a month. They said they could not see any cancer so how can it be this bad when I am still very mobile. Has anyone had anything similar? I am female 72 and not smoked for over 24 years.

[Hidden]

I have a genetic emphysema. Alpha one antitrypsin deficiency. I was already at the moderate stage at 42% Fev1 when diagnosed 12 years ago. I’m now end stage at 25% fev1%. I’m still working full time and I also have bullae. I do lose sats down into the 70’s when exerting. I’m not yet on oxygen. I recover pretty quickly on my sats. I do get winded easily. If my Drs were really on the ball id probably be on oxygen. I don’t mention it as I need to work or my family will be in the poor house. I’m only 58 and 9 years from full retirement age.

[Granik in reply to Hidden]

Do they offer any options re the bullae or do you just have to live with it. I had severe surgical Emphysema after a procedure about 5 years ago I wonder is this is the result of that.

[Hidden in reply to Granik]

Here in the USA they soon will be able to simply place plugs in large bullae. Thus allowing better gas exchange.

[2greys]

Nga mihi mai i tetahi hoa o Niu Tireni. (Greetings from a fellow New Zealander)

We are all so different in how this dreadful condition affects us. Like Apeter, I too still work full-time, although that is getting almost too difficult to do now. My FEV1 % was 28% last April, although I fear it is now lower, after being hospitalised with a bout of Pneumonia in October. I am also in full remission with lung cancer, for nearly 2 years now. I reside in the UK.

You are obviously still very active and that is probably the reason why you are coping so well, I also walk a lot, 2.5 miles in a stretch with obligatory stops to regain my breath and the use of my legs from cramp. Keep up being active and walking, it does you more good for your health and mind than you can ever know. Well done on quitting smoking as well, I cannot match you though, being almost 4 years smoking free.

[Izb1]

Hi Granik and welcome to the site x

[Dedalus]

Hello and welcome

[Durcot]

Welcome to the site

[hallentine47]

Welcome. My Daughter lives with her family in Nelson. A beautiful country you have. Yes we are all so dofferent but good to share and compare.

[Granik in reply to hallentine47]

Beautiful place Nelson but I am in the sunny Bay of Plenty.

[stamford1234]

Hi, welcome. You are doing well to keep the exercise up. Keep us posted, don't let it get you down.

[jackdup]

Welcome and glad to hear you are able to do as much as you do. Exercise is important as you have proved. There is talk of changing how people are evaluated for what stage of COPD they have, as now it is based pretty much solely on your FEV1% of predicted. There are people such as yourself who are classified as severe but can function better than someone who may only be moderate. We are all different and two people with the same FEV1% of predicted may have completely different capabilities and quality of life.

Good luck with your upcoming tests.

[122bus]

Hello Granik, I am so sorry to hear about your condition and have added you to my prayers. I had double bronchial pneumonia at nine months old and was in hospital for a while. I have had asthma for many years and I use Fostair preventer and ventolin when I have an asthma exacerbation or am breathless. I am 69 so will be 70 this year.

Take care of yourself and I will remember you in my prayers. God bless.