Wednesday, February 23, 2011

Good, no, Great news Day!

Hey, look I know this is only really good news for us G551D's so far; but Vertex are working on a correction for you Df508's as well, so fingers crossed. I'm especially hopeful that this will be of benefit for Rob from the CF forum who is fighting to get on the transplant list at the moment.

"Phase 3 Study of VX-770 Showed Profound and Sustained Improvements in Lung Function (FEV1) and Other Measures of Disease Among People With a Specific Type of Cystic Fibrosis

- Relative mean improvement in lung function of approximately 17% from baseline compared to placebo achieved by people treated with VX-770; mean absolute improvement from baseline of approximately 10.5% compared to placebo; both measures through 24 and 48 weeks -

- Significant improvements in all key secondary endpoints for VX-770; patients were 55% less likely to experience a pulmonary exacerbation, had significant reductions in sweat chloride and, on average, gained nearly 7 pounds -

- Discontinuations due to adverse events were less frequent among people treated with VX-770 -

- Data support Vertex plan to submit U.S. and European regulatory applications for approval in the second half of 2011 -"

Tuesday, February 8, 2011

Dreams of Dad

Had another dream about Dad last night, Can't remember the details very well. He had been admitted to hospital but he hadn't died, he had recovered but not enough to go home so we were organising a day out for him I think; then the dream changed and we were on a weekend break somewhere, but I got lost and was trying to retrace my steps back to the holiday home we were all staying at. In the dream we (dad and me) had a long conversation but I can't remember what it was about, I think he was just saying wise dad-type things and I was was talking back thinking yeah, he was really wise ;-) In another dream a few weeks ago I met his spirit while walking along a beach, later on I met my Gran's spirit and I tried to get his spirit and my Gran's spirit to meet so they could talk to each other and move on. In yet another another dream a few weeks ago we were talking on the phone, he was still living in Caterham down south and I told him I loved him at the end of the phone call, think I woke up crying at the end of that dream.

Maybe this is to be expected? Obviously not having my Dad around anymore coupled with the swiftness of his passing has left me with an emptiness (subconsciously and consciously) that will take some time to figure out. I was talking to my sister about it and she said when someone close to you dies it leaves a gap in your soul and your soul has to grow and change shape. It's similar to what happens when you have children, you have to change to become more responsible when a child arrives to that you need to look after - when Abby first came home from the hospital after being born I remember I was so nervous, the in-laws brought a bottle of champagne and after a few sips I started to get little tipsy and I immediately started to panic thinking "oh no, I can't be tipsy while looking after a baby) . My sister's very cosmic, if you hadn't guessed. She's also lived and worked in Peru near Machu Pichu; I'm very jealous ;-). We're trying to sort out his estate at the moment but it's not easy, he was something of a hoarder so he's kept every single letter he received for the last ten years, not fun trying to sort through it all.

Anyway, in the conscious world ;-), it's two of our friends' 40th birthday this Saturday, it's music based fancy dress. I was originally going to go as one of the Beatles but R wanted to go as a duo so we're going as the White Stripes. Gutted, I wanted to be John Lennon for the night ;-) Ah well, at least the costumes will be easy. Think I'd better start working out as well...