Well had my trial for the Amphotericin and I passed. Breathing tests only reduced by 1% and anything under 10% is acceptable. It was a long afternoon because my lovely doctor wrote the prescription so I could take everything home with me afterwards and apparently there are 2 compounds and he didn’t specify which one. Unfortunately he was out of the country and so there was a little delay (over an hour) whilst this got sorted. Hubby got a bit impatient so I sent him off for cake (sorry Karen) as the Brompton is not far from the King’s Road and Knightsbridge. He came back with 4 lovely slices of a strawberry creamy delight. It was 4.30 before we had finished at the hospital so had to drive home in the dark. Friday night coming out of London it was a bit busy but we made it and ordered a chinese didn’t feel like cooking. Hats off to all of you that already inhale this stuff it is quite disgusting and the colour! I have been inhaling different medications since the 70’s and this is the worse thing I have taken. I thought gentamycin was bad enough. I will not be beaten though.
Whilst sitting waiting I did a bit of pondering as I was listening and being nosey people watching. There were some parents there of twins who must only have been about 3 years old. Both were ill and one of them was having to have nebulised treatment and the parents were being taught how to do it all then had to deal with the frightened boys. Inhaler spacers were used for both of them then one had to have the nebuliser. The screams and crying from both were so sad. Very impressed by the physio team as not only do they have to look after the children there is the support they give to the parents. Reassuring them and encouraging them to be a bit firm which must be so difficult when your kids are ill. I have had my illness all my life but my mother had it to so I think I was fortunate in that it wasn’t anything new for her so I felt calm around her and also sometimes we sat together to do our treatments. Bad memories of Ephedrine and Adrenaline tablets that I had to put under my tongue when I had an asthma attack. Don’t get me wrong I had my moments and I am sure my mum was a nervous wreak at times but thankfully she was a strong lady.
Reduced my steroids a bit today as well. All looking good on wards and up wards they say. Plans for next week to do a bit of crimble shopping.
Keep well. x