Hi Everyone, firstly thanks again. I am being allowed home for the weekend. If I get on ok I can stay at home. I have finished my iv antibiotics and moved on to nebulised antibiotics. The bacterial infection will always be there now, we will just try and dampen it down.
I need a lot more oxygen now too, I am on high flow oxygen. They are arranging for me to have an oxygen concentrator at home. The nurses and physios will see me at home too.
Sadly the end result of the secondary infection is that both the chronic necrotising bronco-pulmonary aspergillosis (growths themselves)
and the allergic bronco-pulmonary aspergillosis have both turned very aggressive and flared up. As I mentioned before the treatments for both of the diseases completely counteract each other. This means that we have to decide which disease to treat.
Goal is to still get to Silverstone :-)
Thanks again everyone, your support really is amazing.
Xxx
Hi Juls
Had no idea aabout this till now. Just keep marching on luv you're made of strong stuff gal! You should have txt me, I'dd have come and tormented youn presume you were at derby?
Spent monday at/in kings mill hopsp, 8 hrs!! Dysreflexic, bladder n' bowel spasms, water retention even with a cath! Drs were crap, rude, insulting and not prepared to ask for help and guidance with the ads from stke out paatients. I gave them printout from here on aads, but it sailed over their heads like flying pigsd! Asking me questions then questioning the answers. Already started the complaint with A+E managers.
Away nxt wk, cottage nr Pickering, going to put this "freewheel" I bought off clara to the test on the moors! When I was on my feet, I did the lyke wake walk, 42 miles west to east accross the moors 16hrs hard walking, up and down gullies, ditches, streams and heath. Amazing views. Wonder if I'll manage it on wheels?
I"ll have my acer with me if you want to chat.
Xx
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