Friday, 27 September 2013

Latest Visit to the Royal Brompton

Well as you all  know I'd rather been dreading this as I know I've been off colour of late.

As is always the way, when I'm not bothered about the visit the roads are chaos and I'm late. When I'm anxious and really don't want to go they are empty and we sale in arriving thirty minutes early. We also had no trouble parking.

I had all the usual tests and after much humming and scratching of heads it was decided there has been a slight change in my condition. It's not a bad one or too serious but it is definitely there. So they have decided to treat early in the hope of halting progression and maybe even getting me back to where I started. Unfortunately this is going to mean a drug change but that might not be as bad as I'm dreading.

The are putting me onto a new drug that only got approval yesterday. He told me what is was twice and the name has gone clean out of my head, all I can remember is it starts with a 'V'.

This drug is Flolan but Flolan with a difference. This is stable in air which means I can make a whole batch up in one go and keep it in the fridge only changing the cassette once a day instead to twice. This will free up my time considerably and make it easier for me to go out in the evening if I want too. That's the good news. The bad is that as it is a different composition all the problems I had with nausia and weight loss could happen again until I get used to it. Even if I'm fine I'm still going to have problems because my dose is going to be increased too. Bugger! They are also increasing my Furesomide from 40mg to 80mg as I'm badly retaining water. Not at all happy, at all!

Any way that is the brief update. I'll go into more detail tomorrow when I've got my own head around it. As it is I'm shattered and desperately in need of a cuppa.