Question regarding my mum Im really worried, Pleas help if you can x

So today she has had yet more breathing and lung capacity tests. Her lung oxygen levels are down to 35% and are getting worse all the time. Her consultant says she has to have a lung transplant asap. She has hereditary alpha 1 with zz genes but wont give the bloody cigs up. I dont know what to say to her. This is a VERY blunt question but do you think she has long left??? Im sorry for posting but my mum holds so much back :(

12 Replies

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  • Hi gemmalou. Nobody can put an accurate time scale on your mum's life, not even her doctors. Having said that, there are quite a few people on here whose lungs are in worse condition, with lower percentages than your mum, who are still going strong. But, however long your mum has will be considerably shortened by her smoking. Perhaps you can try ringing the BLF helpline on Monday? And if I were you I would also ask to speak to her doctors, to ensure you have a clear picture and to ask questions. The people on the helpline will be able to advise about it all. Good luck.

  • Sorry if I seem silly but what is the BLF? I do need to know more as she holds back a lot. x I need to really try and help her but she just ends up falling out with me if Im too pushy :(

  • The British Lung Foundation. They run this forum for us.

  • Sorry, it is the British Lung Foundation (see the top of this page). Their number is 03000 030 555. It is an ordinary number, like 01 and 02 landlines, so will not be too expnsive to ring. And they are really helpful. The problem is they are closed over the weekend. Try to be patient and relax a little. Your mum is also probably really worried, and that may be why she is a little snappy with you.

  • My level is 27% but I gave up smoking nearly 2 years ago and still get around ok. I just have to stop and get my breath quite often. As aunty says ring the BLF helpline.

  • What a lovely daughter you are,I hope Mum appreciates you!

    Do ring the helpline and put your fears at rest,its alwasys easier,a trouble shared!

    all good wishes to you and your Mum,keep in touch,you always have support here,

    Hugs,Wendells xxxx

  • Good for Booker - straight talking to help a very worrying situation which is what is needed. All the best to Gemma and her mum for the future -- love Annie80

  • good morning love,i know peoples worst then your mum and sovived,she need to stop smoking sooner as possible,

  • My lung oxygen went to 25% and I have held it around that for the last year. Do the right things and it is possible to halt the decline a lot. She will have quite a while to live yet although mum will find she will get out of breath doing jobs that once were easy. So will need help at times. I know without my wife life would be very much harder, if not impossible than it is now. All the best and you sound like a great daughter.

  • Good advice from auntymary gemmalou.

    Its a tough one for you because in the end the decision lies with your Mum, I do hope she can become smoke free. As your Mum is Alpha1 you don't want to be passive smoking, Alpha1 is hereditary. Have you been tested yet gemma? If not I would ask your doctor about this explain your mother has already been diagnosed.

    Here is the BLF link about Alpha-1:

    blf.org.uk/Conditions/Detai...

    Quoting from that page:

    "The diagnosis can be made by a simple blood test to measure the level of A1A in the blood. If the level is low, further tests will indicate how bad the deficiency is.

    If a diagnosis of A1AD is made then family members, and particularly siblings, should be tested to look for anyone else who may have undiagnosed deficiency or disease. "

    All good wishes to you and your Mum

  • Im so sorry to see your problem, what a struggle for you, youre a saint, I hope it only gets better.

    Dont let the bad messages or things you read on the web worry you. For every bad report there are 2 good reports, but we only seem to find the bad.

    My advice can only be this- You are caring for your dear mum, she is struggling, its time to sit down and battle through the tears, and face up and tell her straight what your fears are. You must tell her you dont want to lose her, but you will if she carries on smoking.

    She simply MUST stop smoking, end of story.

    Dont worry too much about numbers and web sites , there are folk on here who were given 1 year to live 15 years ago.

    With a few lifestyle changes you can 'Push' your mums life way past what any report you may find in google.

    You have my total respect and regard, having a wife I totally rely on gives me an insight to your worries, its terribly hard, but just grit your teeth and be blunt with her.

    The time for holding back, and hoping it will get better on its own has past, now its up to Mum to Stop.

    Few things I found that helped:-

    A real good NHS Stop smoking nurse who gave me a few months support, and provided me with FREE Nicorette Inhalers,This gave me something in my hand, and something to suck on when the cravings got hard.

    I then went onto Nicorette chewing gum for a month, which I slowly lowered, and was able to stop totally.

    You can get this stuff FREE on the NHS, dont miss out, dont see the £20 prices and shudder, see your GP surgery smoking cessation team and use the crutches they offer.

    It may also pay to check out the new Electronic Cigs, which give you the Nicotine and the feeling of smoking, and something to hold, with none of the side effects.

    Hope this may help your dear mum.

    Take care

    Cate

  • Please, please Gemmalou try your hardest to get your mum to give up smoking. I also have A1AD and unfortunately I am too old and too poorly to undergo a lung transplant because I was diagnosed too late, your mum must be made to realise that if she has been told that this may be a possibility for her she must stop smoking because they may refuse her the transplant. Best of luck to you and her.

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