British Lung Foundation

cant get a lung transplant

cant get a lung transplant because i have 95 percent auntobodys that will reject the lungs. but does that mean i cant get anything else, he told my daughter people with my emphyzema , two out of three would be dead in within two years.. any advice or what else they are trying. because i am not going out with out a fight...

14 Replies
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Hi latingirlshyp. Don't take any notice of time limits. There are people on here who have had emphysema for 20 odd years and still going strong.The two main things are giving up smoking if you smoke and plenty of exercise.

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Can I add a third thing please - a positive outlook and sense of humour. Whoops that was two extra things, but do think they are important, although not always easy.

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Totally agree with you xx

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What Easybreather said ! :)

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Hi latingirlshyp, I was diagnosed 18 years ago, am classed as severe/end stage and am sure I have few years left yet. Whoever told your daughter that people with emphysema die within 2/3 years? Ridiculous! I, too, am unable to have a transplant, won't go into details. There is lung volume reduction surgery and also having bronchial valves inserted (the latter is a fairly new procedure and am not sure yet how widely available it is), but I don't know how either of these would fare with your other problem. Apart from that, in this country, there is only medication to relieve your emphysema, so far as I know. As Puff says above, stopping smoking immediately, which will significantly slow the progression of your emphysema down, exercise and eating sensibly. I do remember a doctor saying to me around the time I was diagnosed "you'll be in a wheelchair in 10 years". Well, it actually took 16 years but I was stupid and didn't give up smoking until 3 years ago, far too late. All the best to you. Libby

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havent smoked in 8 years, thank you for the feed back, you really helped

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All of the above and a good balanced diet, yoga is said to be good for lung function

Try giving BLF helpline a call, they are really helpful and can advise you too 03000 030 555

Kat

xxx

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i am from the usa can i still call that number

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I really don't see why not, you will just need to use the country code to get through, I cant think of a single reason why they would not help you as best they could

xxx

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Not sure that you can use the same number - it is a, to use a USA term, toll free number which only works within the country. You would need to find out their full, normal tel no and use that with country code of 0044.

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Latingirlshyp

You could also email the helpline if you wish helpline@blf.org.uk

Hope things work out well for you.

Love C xxx

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Good thinking

xxx

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Just had another little thought (my head is so sore now). When my daughter was running for charity a friend of mine in the States asked if my dd minded if she donated to the American Lung Foundation. It may be easier for you to speak to them on the 'phone but please don't leave us.

lung.org/#

XXX

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I have antitrypsin antibodies in my symptom through no fault of mine own but is inherited unfortunately my lung capacity is crap 18% and have been dismissed as too dangerous to even attempt lung reduction so my life is to continue on oxygen forever.

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