The Aspergillosis Trust

I  mentioned in my last blog about the setting up of an advocacy group for aspergillosis.  Well we are on the way.  There is a twitter account now which is Aspergillosis Trust @aspertrust and a website which is still under construction.  A letter has been drafted and ready to go as we are looking for a celebrity patron.  I will be posting letters out to agents/publicists to get support and hopefully a patron.  My list is getting longer as I try and do research everyday for addresses.  A card will hopefully be produced so that if a celebrity feels they can’t be our patron they can show their support by doing a selfie holding the card.  I am feeling quite positive about this as I know there will be loads of disappointment but we will not be beaten.

Today I have been to Brompton to see my respiratory consultant.  I have known him for over 25 years if not longer and when I am struggling I know he will be honest with me and do the best he can to help.  I also had a C T Scan first.  Well I told him everything that had happened and also had a whinge as I felt the hospital had let me down a bit.  I told both my consultants last year I was feeling bad and they both did bloods and sputum tests which each time showed I had a problem.  After phone calls from me and chasing around antibiotics where prescribed.  They didn’t work.  He has said now that when I have a pseudamonus flare up I will need intravenous antibiotics.  Also he had me walking around his little consulting room attached to an oxygen saturation machine as I am breathless all the time.  Started at 92 after a minute I was down to 87 so I have to have an oxygen test so I can have oxygen at home.  Long discussion then about my asthma which definitely worsens when I have an infection.  All I can do is take more salbutamol via the nebuliser.  Still growing the aspergillus – 2 sorts now – but luckily they are sensitive to the Fungizone.  I must of been in their for about half an hour and he asked me if there was anything else so my usual reply is gun and bullets please.  Prof always says ‘not yet’ with a smile.  Got my sticks and he came out with me to reception to organise the oxygen test and out of the blue mentioned he was sorry he forgot to mention my Vitamin D levels were very low and that he would ask my GP to prescribe me something.  I won’t hold my breathe.

Even though it isn’t good news I have come away feeling a lot happier for some reason.  I also have a mission now by helping my fellow sufferers spread awareness and raise money.  I have a card order which I hope to complete tomorrow and then I will be trying to get a stock together, the cupboards are quite bare.

If anyone thinks they can help with spreading the word or they know of a celebrity I could contact please let me know.

Take care. x

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