1LungAmy
Posts:
8
From:
London/brighton
Registered:
03-Dec-2006
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This Website
Posted:
03-Dec-2006 20:15
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hey hope you guys wont mind me gatecrashing- i just think a forum like this is a great idea!-
i dont have CF but i have a friend with a younger sister who does.
Wish i could meet other people in a similar situation to myself..i have TB which caused my left lung to collapse, it hasd remained so ever since, despite lots of physiotherapy, nebulisers and a great machine which i loved called the 'Bird'- wish i could have taken that machine home with me!.
I was admitted to hospital in May of this year with suspected TB yet again!-it was back as it seems as thought first time round the drugs were ineffective due to blood flow restricted- all thanks to the collapsed lung!
Also discovered i had pseudomonas and had to have IV so that.
Since then i have to do physio every day, use the hospital gym and do breathing exercises- psotural drainage and the active breathing cycle thingy.
However in order to get rid of any remaining TB germs left over after my 6mths of Treatment and to prevent any recurring psuedomonas i am having my lung removed-pneumoectomy in january.
Until then i am living back at home in London as opposed to being at uni in Sussex and living it up with all my friends, i keep getting horrible chest infections just to make it all worse.
i have lots of nice people to help me- a dietician and a physiotherapy and of course the TB nurses. I aslo volunteer for TB Alert- the UK's national TB charity and i recently attended an all parliamentary meeting at the House of Commons trying to get MP's to give greater priority to TB.
Not being at uni and not knowing many people in London anymore means that i feel quite left out of things somtimes, i think i have spent more time at home than uni in the past three years!- ishould be graduating this year but instead i will still be taking my first year exams for the first time ever!
im having a great time working with TB Alert but sometimes i just wish i knew someone else with TB who knows whats like, however there would not be many TB Patients with a collapsed lung and about to have it removed! Very unusual.
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