aHUS in the press

Well due to a family berevament we had to go away for a couple of days but struggled to get fluid off before we went away so wasn't sure if i would manage to go the extra day without dialysis. As it stood i didnt manage it and had to come back a day early, legs ache so much with the extra fluid but BP is still quite low so as soon as try to take fluid off on the machine it drops even lower and i cant take anymore off.

Decided today to go on and do an extra 2 hours UF ( taking fluid off but not actually dialysing so my blood doesnt get cleaned). Managed to get 3 litres off but still got more to go so will go on again tomorrow but will actually dialyse.

Anyway in the press at the moment there is alot about 'deadly cucumbers' which are full of Ecoli which has brought on aHUS. in several people..for those of you that know of my condition this is what i suffer with.

aHUS is not that well known and so although this is tragic that people are suffering with this it is good to make people aware what is going on

At present there is no cure for aHUS but there is alot of research going on and the new drug 'soliris' or ecluzimab whichever you may know it as is currently being trialed and we have hope for the future.

Wont be long now till the aHUS conference which im really looking forward to and i just hope can stay well enough for it.

Hoping to get X-ray results this week on my ankle but my consultant seems to think its deterioration of the bone from secondary hyperparathyroidism but we will have to wait and see.  Also the pain started in my hip again today and so im limping around and just praying i dont end up bed bound, taking some tramacet for the pain and keeping fingers crossed.

TTFN

xx