Friday, 28 June 2013

A Bit Of A Dip

Well later than promised but I sort of got watching the tennis on Wednesday and didn't actually get as far as turning on my computer.

The first three days back at work were not too bad, if you ignore all the moaning and complaining that is. All I can say is that it is not a happy camp at the moment and it is taking it's toll.

I coped quite well and felt OK most of the time but I know my stress levels have gone zooming back up because I've stopped sleeping. I couldn't believe it, one day back in work and I'm lying awake until three or four and dozing fitfully until the alarm goes off at six. You don't have to be a genius to work out that is not good news. It may just be my system getting back in the swing of things again but somehow I doubt it.

It was my three monthly visit to the PH clinic at the Royal Brompton today and after a lot of tests and messing about they concluded that I'm still doing relatively well but not as good as I was. I have put on weight but I am retaining more water so my diuretics have been permanently increased, not by much but it is a backward step. Disappointingly my weight gain is probably mostly water and once they kick in I will loose again, how frustrating! X-rays showed that I am clear of infection so my continued cough and mucus production is probably due to irritated lungs and should calm down in a week or two. I have given a spit sample and that will be analyzed for any nasties lurking. The echo showed that my heart is more or less the same as it was last time but there is a rise in pressures, they have gone up from 76 to 93mmHg (normal pressure is between 15 - 20 mmHg). Not a huge leap but a worrying development considering how stable I've been up to now. If I show another deterioration next time then I will have to have my flolan increased. My oxygen SATs were 90%, so better than expected. I didn't do a walk test this time as I was still recovering from infection and it probably would have returned a false result.

Finally some good news for all those on Flolan. The new Flolan, which is stable in air, will be in this country from 21st July and patients should be able to start using from September. This means you will be able to make a whole weeks worth up in one go and keep them in the fridge, you will also only have to change cassettes once a day. When asked if I'd like to go onto it I said yes, I cannot see why anyone wouldn't.

I must admit I'm a bit down about the rise in pressures but at the same time pleased that there is no sign of infection. I'll get the spit test and blood results in a week or so and if anything shows up they will either call me in or ask my GP to prescribe something.

Time for some tennis. A fuller, better blog tomorrow.