8 replies to this topic

[Zolabud]

After giving up smoking in January and starting to vape I had a chest infection which had me in hospital twice.
I had a spirometry which says I have Emphasyma and COPD.
I take Spireva and ventolin and Seratide.

Then I had a blood test to see if I had something called Alpha 1 Antitrypsin and as my brother (who used to smoke up until 6 years ago)
came out clear I thought I would too.

Got my results last Thursday and I have it.

I am gutted.

I have been onto the British Lung Foundation website and asked a few questions and everyone there is so helpful...

Just wondering if anyone here has it?
I don't know exactly which sort I have...I will find out tomorrow I hope.

I am really cheesed off about my Emphasyma and COPD and with this Alpha thingy on top I am SO worried....

I can't explain it so here is a link if you are interested.

http://www.bbc.co.uk...ns/alpha1.shtml

[Kate]

Sorry to hear about this Zola. Try to keep well.

[Crundy]

Seems to be a genetic disorder which prevents you from making an enzyme that breaks down elastase and therefore makes you more succeptable to emphysemia. Not much you can do about it, apart from avoiding smoking (which increaes elastase production by increasing the number of neutrophils in the lungs), so if you don't get on with vaping then try your best not to go back to the cigarettes.

[Zolabud]

I had 2 lung infections earlier in the year which ended up with 2 hospital stays of 5 days with antibiotcs..Afterwards I had a spirometry which revealed I had mild Emphasyma.My doctor arranged for an Alpha 1 test to rule out hereditry lung disease as quite a few members of my family had died from Emphasyma.
My sister died 8 years ago and she had the Alpha deficiency. My younger brother who gave up smoking 6 years ago didn't have it...So I was kindof safe in the knowledge that I didn't either.

I went to see my lung nurse last Thursday to get my results and she said I had it.She said to ring my doctor on Tuesday to discuss the results.
I was gutted.

Came home and sat for 4 days on my computer learning as much as I could about this condition.
Depending on which parent I had inherited the gene from...If it was one parent,prognosis was good.
If it was 2 parents....Well....I would be very ill as this deficincy means that even if I had given up smoking my lungs and liver would continue to self distruct.

Of course then I thought about my partner Mick who also died from Emphasyma.He was never tested for Alpha 1 but he was dead at 47.
I have a son,he has a son. The thought of me passing a dodgy gene onto either of them...My son smokes and drinks...My grandson has asthma....

By Monday night I was VERY worried.
Tuesday morning I rang my doctor and she said my levels were normal.

I swore....Apologised profusely and said "Do you realise what the last 4 days have been like for me?? Sack that nurse !! "

I now think it is my birthday as I 'only' have Emphasyma...So some good came out of it.

Rang the British Lung Foundation helpline to find out exactly how a mistake like this could have been made and was told that the lung nurse didn't interpret the results properly and she probably didn't know much about Alpha 1.

I have completely lost faith in her and will probably change doctors over all this.

Thought I would share my news.....

[RedKite]

I'm so relieved for you Zola. While it's not great to have emphysema, at least it can be managed. Take care of yourself.

[FlamingKaty]

So pleased for you Zola...that must have been a traumatic couple of days for you . Keep off the fags, eat well, get lots of exercise and you be fine (so my doctor tells me....) . Take care.

[Zolabud]

FlamingKaty, on 27 April 2011 - 06:53 PM, said:

So pleased for you Zola...that must have been a traumatic couple of days for you . Keep off the fags, eat well, get lots of exercise and you be fine (so my doctor tells me....) . Take care.

I have always eaten well...Don't eat sweet things (like cheese though...) drink in moderation,am well off the fags.
It's the exercise I find so hard.
After my 2 breathless episodes earlier in the year I get panicky when I get breathless,which I do very easily.

My big brother bought me up his mountain bike for me to ride last night.Took me 10 minutes to lug it up the stairs to my flat....
Big heavy bike...

Ho hum.....

[Maff]

if it was me, I'd try stopping inhaling anything, e-cigs included, give me lungs a rest. So sorry, take it easy. Could be any one of us, we don't know what's round corner.

All the best Zolabud.

[Zolabud]

Maff, on 27 April 2011 - 08:29 PM, said:

if it was me, I'd try stopping inhaling anything, e-cigs included, give me lungs a rest. So sorry, take it easy. Could be any one of us, we don't know what's round corner.

All the best Zolabud.

I have tried so many times to not inhale even E fluid.
I start off in the morning full of good intentions,,,,And as the day goes on I inhale once and that's it.
All I can think to myself is 'It' s better than smoking rollies..'
Hard now I have got the all clear from the Alpha but still got Emphasyma......

Hard.....