SuzySF wrote: »
re the Blog - I've read it - but i had no need to - i'm a CF - transplanted adult (Heart & Lungs 1991 aged 31 - now 47 !!)
yes its hard work, just doing physio to keep breathing !! but something that realllllyy reallllly bugs me is this ...the average survival age is now 31, due to massive progress made with antibiotic treatments and preventative medicine. What has'nt kept apace with this is the Governments acknolwedgement of this fact - we live longer. In the 1997 Labour manifesto that got them into government (Tony Blair) promised he would add Cf to the list of illness exempt from prescription charges (diabeties etc are on there). To date it is still not exempt..and Blair has retired with broken promises. We live in hope (as we do daily - it seems to come along with the defective gene that causes CF !!) that Gordon Brown will now honour that promise (after all he has a Cf child). I attend the Cf unit at Heartlands Hosp but live in Wales, I now luckily dont have to pay (free since April 2007) - previous to that I had a prepaymet certificate for a year....English Cf's over 16/18 (if in full time education) have to pay still. These drugs keep us alive and well..and beleive it or not even a transplant is exempt in England..even tho you would die without the anti-rejection drugs....
it's not like we dont have enough on our plates already !! it's adding insult to injury really. Of course the problem was - we didnt live past 16 so it didnt matter that Cf wasnt on the exempt list. IF we didnt do our antibiotics i.v's or inhaled, our pancreatic ensymes etc we'd be very ill...if a diabetic didt take their insulin - they would be very ill or die..whats the difference ???
On May 9th i organised a coffee morning for Cf it was Cf Week - we raised £200 in 2 hours....it not much but add lots of littles together and u make a big !
personally - i'm very well - had a bad winter with 2 hospitalisations for ii.v. antibiotics for chest infections, lost a lot of weight (goes with the illness ) now eating for britain and so far put on 4 lbs.....10 to go ... i am the envy of work colleagues all dieting for summer exposure - and i taunt them with cream cakes, chips, pies, chocolates and crisps... its got to have a up side hasnt it !!! rofl
to that end - Aldi and Lidl are fave food shops along with Tesco (points) - we dont have any here where i live so go on a big expedition monthly - got a big chest frezzer - freeze cheese, butter, cooked ham, big lasagnes etc.
they freeze really well
BIG THANK YOU MARTIN FOR MENTIONING CF - its whats known as an Orphan Charity..small. We dont get much recognition and they dont have money to splash on multimillion pound advertising like Oxfam, RSPCA, NSPCC etc. but are just as much in need of funding.
What supplies do they need?
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