Hereditary

Jacee, short answer is yes i'm afraid. It is rare, you may have seen it mentioned on copd sites already, commonly referred to as 'alpha 1' (full name is Alpha 1 antitrypsin deficiency) . Someone who has this will have either childhood liver problems or by adulthood - lung problems ie copd. If he has it you should get entire family tested. On the other hand if he is a smoker it may be 'normal' copd and they have caught it early. You and I would have tested positive for it probably at that age only with, say, FEV1 65 or 75% rather than the levels we are at now. I hope this is a false alarm for him, but if not, then at least the wider awareness amongst doctors will mean they have caught it sooner rather than later. I am awaiting results of alpha1 test from last week as hospital doc said when its this bad , this young, he automatically tests for it just in case. I think in my case it just those darned fags, but at least if it is alpha, I know to get kids tested (though they don't smoke). In the USA they have some sort of weekly hormone therapy for it. Its not available in good old Blighty as its expensive and they say it has not been 'proven' to make a big enough difference in halting the decline in lung function. There is however a new promising drug in the pipeline apparently.

I do hope your son gets a 'negative' on this Jacee, love and best wishes Vanessa x

Thanks for this van. I will let you know how he gets on.

Jacee

Jacee, I was wondering if your son has had his test yet? Keeping my fingers crossed that it's good news for you all, love Van xx

Hi Van, he has yet to have an appointment. Meanwhile I am reading all I can on Alpha 1 - though I think this unlikely as I tested negative for it. Maybe it is just unlucky as he is a smoker, though at 35 and as he started smoking later than most (at about age 24) and has only ever smoked lightly it would be surprising if this was the sole cause wouldn't it? Will let you know more once he has been.

Jacee

xx

I should think he will be ok then, at least it shouldn't be COPD. And unless either you or your husband are Alpha1, I don't think he can be either, so hopefully all will be well. A ruddy nuisance that folks always have to wait for all these tests though isn't it ! If they could do these things there and then it would make life a good deal less stressful. Van xx

Oh dear. No Alpha 1 in the family but it has been confirmed that my son has COPD. He is on the \"moderate\" scale at 73. I don't know what else to say really. NOT good news.

Jacee

xx

Oh Jacee, I'm so sorry to hear your news. I have to admit I had hardly thought it likely in one so young unless there had been Alpha1 present. At least he has an 'Expert Mum' to guide him on how to kick this thing in the butt - it is possible to stay pretty much where he is now if he stops smoking, doesn't allow others to smoke in his home etc. avoids colds + flu where possible and gets regular aerobic exercise - we all know the drill! If he can stick with all that he should pretty much have a normal life and lifespan.

Please don't take this the wrong way, but perhaps this is one time where your having COPD has positive aspects. In addition to being able to guide him he can see what happens when we don't find out and take action in time. That should serve to make it real for him, as lets face it, most of us wouldn't have paid much attention to it at that age, we thought we had 'forever'. All the same i still find it incredible that it has shown up in one so young, even if he had been a heavy smoker. He must be feeling pretty shell shocked.

I can't think what else to say except that I am thinking of you all and wish you all well. I'm also glad that I just decided to check in, regardless of ads, to see if there were any posts or messages from you - thats a couple of times now that I've had 'strong urges' re this site - spooky - I think they must be beaming subliminal messages out to us or something !

lots of luv, Van

:hug:

oh no, you must be heartbroken jacee. i really am so sorry.all my love and prayers go to you and your family. you must feel like, SREAMING. stay strong, and try to be positive. god life can be so unfair. your son will be alright. hes got you for a mother, and your a lovely kind strong lady. take care xkarenx :love:

Hi

Thank you both for your kind words and support. I have not ignored them - something weird is happening with this site. I have logged in freshly every day and these new messages have not appeared on my computer until this morning!

Jacee

xx

new here, but putting comment as I can relate to this discussion.

are there any updates, regarding son and smoking etc.

has he stopped smoking yet ?

Hi eddy,

Thanks for commenting - it really helps to know that people take the time and trouble. My son stopped smoking immediately COPD was suspected but then he had some bad family news and started again. He was then going to try stopping again. I am unsure of the current situation. I am left wandering how you can relate to this? Maybe you can offer advice or comments from experience?

Jacee

treat it like a clock, once you have COPD diagnosis,

I stopped smoking at one minute past midnight, at 63 years of age, having smoked since school days.

At 53 years old diagnosed, carried on smoking till 60.

In May 1995, 5 years ago was in a coma for 6 days and was given 6 month prognosis.

That is the progression with smoking. You can stop the progression in its tracks by giving up the smoking.

If I had stopped earlier I would not have had to use oxygen.

works better than any medicine for a disease

we all know that but you must get him to STOP now as his life depends on it more than you will ever realise until it is too late, like me, keep putting it off for another day. the clock is ticking

Hi eddy

My story is similar. I had been warned since my twenties that smoking was damaging my lungs and began to get breathless in my forties - but carried on smoking. I actually stopped in March 2009 - at age 57 - and had to start long-term home oxygen therapy at the same time. You are so right about the importance of stopping smoking as soon as possible. Hopefully the message will get through.

By the way, I was mistaken, apparently I have NOT been tested for Alpha-1.

Jacee

Hi Jacee,

I did wonder about alpha1 before not just because of your sons' situation but because I remember you once saying that you would not be a candidate for LVRS because the damage was spread over your lungs and not restricted to one particular area. I had read that emphysema damage from smoking usually shows primarily in the upper lung, making LVRS possible. With Alpha1 on the other hand, the damage starts at the lower lung spreading upwards. So in my case for example, I have smoke damage upper lobes, Alpha damage lower lobes, so pretty much spread all over. Hence when you first mentioned that yours was pretty much spread allover, I had wondered about Alpha. I would hope that you have now been tested. Mind you, other than genetic counseling and health advice I don't think they can do much else at the moment, though as with COPD generally I understand there is much research going on, so hope things will improve for our Kids if not for us. Love Vanessa xx

PS. sorry I'm not around much at present, domestic catastrophe with soaked carpet and floor in this room, so mostly avoiding till dry and back to normal - all raised carpets and soggy underlay at the mo, horrid 'sour' smell developing too - yuk! Can't wait to move somewhere with modern plumbing - this was drainage too, so staying out for health reasons, back by weekend hopefully - love Van x

Hi Van, I had assumed I had been tested, thought everyone would be, but apparently not. I have only found out this morning so no test arranged yet.

Sorry to hear about your domestic crisis - what with this and the ads keeping you away I have missed you - hope you get it sorted soon.

Jacee

xx