Sunday, March 14, 2010


Just a quick update on how my Southampton appointment went on Friday...
Well the plan was to get the first flight out there, get some shopping time and lunch at an awesome chinese in before the appointment at 2pm, but we landed at 8am and i could hardly walk to the train platform-across the road - let alone contemplate shopping all morning so we ended up just heading straight for the hosp. Sat around waiting for the team to come out of a meeting and give me a room for about an hour but finally got one and had a little sleep about 45 mins, then the doc managed to come in early... turns out it was lucky we went early cos we only just managed to get away on time as it was, if we hadnt started til 2 i'd have missed out on either talks with the team or my flight home!
Weight has gone from 34kg on January 18th, to 43kg! which obviously everyone is really pleased with. And i managed to get a blow of 43% FEV1 compared to 30% on January 18th and 38% on February 1st... though that felt a bit like cheating 'cos i did about 8 and the rest were in the 30-38 range and then there was that one random 43! But i guess if i think about it in terms of you cant blow more than is possible so that potential must be in there somewhere.
Frustrations are in that whilst everyone is congratulating me for being officially a lot better, i don't feel it at all :(
I suppose it doesnt help that ive had some sort of cold/virus since wednesday anyway, but i just feel like at least if the numbers werent up then i'd have a reason for not feeling good, now i just feel pretty much a failure!
I asked about the enzymes situation, and they were really dubious and basically said to do "experiments" with the timings of my creon 40,000 rather than changing it. And wouldnt listen when i tried to explain that ive been doing that for years :/
and woww they took so much blood! i was practically turning blue by the time they'd finished taking 8 or 10 full vials ha! but the lady who did it managed to get a good vein first go, so fair play to her. Get as much as possible while you've got the vein i say!

Well, Ive had a migraine all weekend and am pushing through it to write this because im bored waiting for the washing machine to finish, but its bedtime now. I cant hardly talk or think, my head hurts so much :(

Goodnight all!

1 comment:

  1. Hi! Bit of a lurker here! My names Gem and I'm 18. Hope your migraine has gone and you are feeling better from your cold/virus! I completely understand where you are coming from when people congratulate you on feeling better and inside you just feel rubbish! Hope things pick up for you soon! X