And now the end is near......

Well it's been a week of countdowns:

31 days 14 hours & 47 minutes till Norad tracks Santa.

2 and a half weeks until my cousin & Aunt visit from Canada - i'm so excited, seems like forever since i've seen my them. We've been quite lucky in the past as it's not been as rare occurance for us to see each other as you think. My Aunt is a jet setting exec so we get to see her a couple of times a year. My cousins & uncle we see every few years. But we are a small family Mum only has one sister & Dad was an only child so it's great when we see each other.

The other countdown ended yesterday. Since April i've been on a clinical trial for a drug called DCA. The way DCA is supposed to work is that it's a drug already used for canceer treatment, Pulmonary hypertension shares some trates with cancer in that the arteries are narrowed by excess cell growth. The hope was that DCA would stop this cell rapid cell growth and in some cases reverse it. It has worked in White Mice.

So since April i've been travelling up to Hammersmith hospital in London every four weeks (it was every two weeks in the first 6 weeks) to go through blood tests, walk tests, and much prodding and poking. To limit the disruption on work & poor Joss having to take time off work (often unpaid) quite a few of the visits were on the weekend. To say it's been tiring is an understatement, and I have to say I am sighing a huge sigh of relief now that the trial has ended. For the first time in three years since diagnosis I felt that I was fitting my life round this disease, and it was just constant. I'm one of the lucky ones with this disease in that 85% of the time I forget i've got it, going to the hospital so frequantly was a constant reminder.

So did we achieve anything from the study?? well scientifically speaking nope, all the tests showed no significant change. However do I feel better taking it YES YES YES!!! It has given me more energy and I can do stairs better. So they are keeping me on it for another 6 months (on a month by month basis - they'll call me once a month to check everythings ok), luckily I only have to go back at the 6 month point for a Right Heart Catheter to see if there's any change in pressure in my lungs.

So that was my week, except for a fun night last Friday which involved a couple of Mojitos.

The Christmas celebrations are nearly upon us, i'm sure they start earlier every year! over the next few weeks running up to Christmas we have a lot of Christmas events on...... can't wait, I love Christmas.

Bye for now blogsphere, have a good week x