Hereditary

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Does anyone now if COPD \"runs in families\"? I ask because my son (who is only 35) has just been told by his GP that he may have COPD and he is being sent for tests.

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  • Posted

    Hi all,

    This is getting silly now! It turns out that my son had only been tested by a nurse at his GP surgery and so I e.mailed my respiratory nurse who advised he ask for a second opinion. His nurse has now said she is not sure (!!!!) and will re-test him in two weeks. One GP told him not to take any medication, the other that an inhaler might help, though neither they nor the nurse prescribed one. The mind boggles. :?:

    Making people more aware of COPD and trying to diagnose at an earlier stage are both good steps forward but GPs and their nurses must be better educated for it to do any good at all.

    Jacee

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  • Posted

    [quote:9da6df77f9=\"Jacee\"]Hi all,

    This is getting silly now! It turns out that my son had only been tested by a nurse at his GP surgery and so I e.mailed my respiratory nurse who advised he ask for a second opinion. His nurse has now said she is not sure (!!!!) and will re-test him in two weeks. One GP told him not to take any medication, the other that an inhaler might help, though neither they nor the nurse prescribed one. The mind boggles. :?:

    Making people more aware of COPD and trying to diagnose at an earlier stage are both good steps forward but GPs and their nurses must be better educated for it to do any good at all.

    Jacee[/quote:9da6df77f9]

    Hi Jacee

    I honestly believe only a respiratory consultant can really diagnose copd after putting their patient through thorough testing and a process of elimination. I do not believe GPs or respiratory nurses are qualified to diagnose copd without this thorough testing and a spirometer just doesn't cut the cake ie it is not sufficient to diagnose copd.

    Your son can ask his GP for a referral to a consultant specialising in respiratory problems.

    Good luck with it all.

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  • Posted

    Hi Guest, thanks for this. I totally agree.

    I recently read that a survey had identified that 80%+ of GPs can't differentiate between COPD and asthma.

    Referral to a respiratory clinic should be mandatory.

    Jacee

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  • Posted

    Hi Jacee, either way it's not on - if your son doesn't have COPD both he and the family have been caused a lot of worry and stress - and if he does have it then he should be sorted out properly and speedily now - not told to use inhalers he doesn't have! The mind boggles!:? :!: Vanxx
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  • Posted

    [quote:8dc0b11886=\"Jacee\"]Hi Guest, thanks for this. I totally agree.

    I recently read that a survey had identified that 80%+ of GPs can't differentiate between COPD and asthma.

    Referral to a respiratory clinic should be mandatory.

    Jacee[/quote:8dc0b11886]

    Spot on Jacee

    Referral to respiratory clinic should be mandatory - with specialising respiratory consultants too :D

    BTW if you think you or your son is Alpha 1, below is info from Alpha1 org web / what is alpha1 / how is alpha 1 diagnosed:

    \"The most common indicators of Alpha-1 include shortness of breath, a chronic cough, and abnormal liver test results. If you have any of these symptoms there is a simple blood test that can detect alpha-1 antitrypsin levels. This test is also recommended if you have relatives, especially siblings, who have been diagnosed with alpha-1, or if there is a family history of early emphysema, with or without smoking.\"

    Not sure if links are accepted here but more about this can be read at Alpha1 Association website:

    alpha1.org/whatisalpha1/howdiagnosed.php

    here is the UK site:

    alpha1awareness.org.uk/testingforalpha1.htm

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  • Posted

    Hi all, Good news, my test results show that my alpha-1 antitrypsin levels are normal. However, my son is still awaiting some kind of clarification.

    Jacee

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  • Posted

    Hi Everyone,

    I'm new here and wondered if there's an update to this thread.

    I have copd 34% fev1 and my son has just come home with a chest infection. When he coughs, I can 'hear' him being just like I used to be!

    When he went to the doctor, he was given antibiotics but no mention of copd.

    I think he should be tested now, before it's too late and I wonder how your son was able to get the tests, Jacee - did he just ask for them?

    Hope things have improved for your lad now.

    Best wishes,

    Stitch

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  • Posted

    Hi Stitch,

    I think you may be right to be concerned about your sons' condition. I would suggest that once his current chest infection has cleared, he requests a spirometry test to be on the safe side. If the GP is surprised at his request he should point out that you have quite severe COPD at a relatively young age.

    You do not say if you are / have been tested for Alpha 1 anti trypsin deficiency.

    Considering your relatively young age 9

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  • Posted

    OOPS!!

    I JUST ACCIDENTALLY HIT A COUPLE OF WRONG KEYS AND POSTED MID STREAM - SORRY - WILL CONTINUE WHERE I LEFT OFF IN A MO..... :oops:

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  • Posted

    ......Considering your relatively young age (I see from your profile that you are only 53) I would hope that you have already been tested for Alpha 1 (a straightforward blood test). However, had you been diagnosed with Alpha1 your Doc should then advise you to contact any siblings and of course, your children, to be tested. While, sadly, they do not treat 'Alpha' in the UK, younger, fit relatives can then be forewarned to safeguard themselves against copd / liver disease.

    Do get yourself tested if you haven't already Stitch. Remember, it's not a foregone conclusion but it is a definite possibility that should be checked for and could also explain your sons chest (being hereditary). You may have to push for this as even last week I came across my own new GP practice 'Respiratory Nurse', and on mentioning that I had 'Alpha 1' she had to admit she hadn't heard of it and knew nothing about it. Shocking really.

    I would love to reply to your other recent posts too, but have been pretty sick since the weekend with severe migraine/ vomiting etc and tho' I think it's easing off now, the screen is killing my eyes. I'm sure I will soon be in fine fettle again and then will spend a deal of time catching up with everyone.

    Love and best wishes, Vanessa smile

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  • Posted

    Hi Stitch,

    My son did not ask for the tests, he just presented at the GP surgery with shortness of breath and they proceeded to confuse him entirely. He is still no clearer. He went back armed with the arguments I gave him and they did refer to the respiratory clinic but he did not receive their letter offering an appointment and so missed it. This is apparently a mortal sin and he has been placed at the bottom of the list to be offered a new appointment. His diagnosis is therefore still unconfirmed and I am still worried about him

    My alpha-1 antitrypsin test was as the result of requests I made to my respiratory nurse. Your son can request testing,particularly as you ahve been diagnosed with COPD.

    Good luck to you both.

    Van, so sorry to hear you have been ill. Hope you are feeling better now?

    Jacee

    xx

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  • Posted

    Hi van and Jacee,

    Well, how's this for a turn-up!

    Before I wrote to this thread, I called my son and asked him to read it. As soon as he started he said, 'Oh yes, I've been thinking about this. Nan died of it but she was 75, you got it but 20 yrs year earlier, now I've got this... and 20 years earlier again...'

    Shortly after, he went out, returned late in the evening with, 'I've stopped smoking I'm going to destroy the tobacco I've got left.' - and he did!

    I can't see that he'll manage to quit permanently, so easily, but I'm so glad that this thread raised the issue and brought it out into the open for us.

    Incidentally, my Alpha1 tests came back negative but I think we clearly are getting it younger than our parents - their cigs weren't so filled with chemicals back then and I guess they weren't such heavy smokers in the early years?

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  • Posted

    Hi Stitch, WOW!! I really hope your son successfully quits. Whether he has COPD or not this can only be a good move. Please pass on many, many congratulations for taking the step and lots of good wishes that he makes it.

    Jacee

    x

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  • Posted

    Oh Stitch what a sensible son!

    I've got 2 sons who both smoke, and a daughter who has never smoked. I wish to goodness my lads would stop now. I've discussed COPD with them, I've shown them the literature, they can't smoke in the house but still they go on smoking.

    In a way though I feel hypocritical going on about it too much because if I'd given up years ago I wouldn't be in this situation now!

    Well done to your son,

    Ann

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