The last few weeks have been crazy and I'm a bit lost for words, still. So I'm going to keep this one short (-ish). It has been a sad couple of weeks and a bad start to 2010 for those in the CF and transplant communities. I hope it's true when they say "it can only get better".
I'm channeling my energies now into raising awareness for organ donation in the hope that one day people waiting 4yrs+ for new organs is a thing of the past, I want that acheived, even if it isn't in time for me. I have some exciting plans hopefully coming together, more on that soon.
Health wise in the last week or so its been chaos, with appointments. As much as I don't mind going to them, it seems to be all or nothing. And "can you just pop in?" no, there's no 'popping in' with appointments. It takes me 1.5hrs to get ready in the morning, ventilator off, nebulisers, inhalers, tablets then I can do what normal do (with help) like get dressed. For example on Monday, I got up at 7am, was out of the house for 8.30am, traffic, so got to the hospital at 9.15am, appointment was over at 9.50am stopped for a coffee because didn't get time to get anything to eat or drink. Had to drop into ventilator clinic for a blood gas. Left hospital at 10.20am got home at almost 11am by which point I was wrecked and had to go back to bed. I struggle to stay awake more than 4hrs as it is, I'm a nightmare (maybe that should be morningmare?) in the morning as it is. So 'nipping' anywhere anymore is just completely out of the question! Next week I only have a couple of appointments, hopefully for a change of NIV on Tuesday to sort out my headaches and an assessment on Thursday for a new wheelchair to cope with new NIV. Then on Sunday (7th) I'm meeting a few NewStart/transplant friends for some lunch, which I'm sure will be interesting, so nice to hear the transplant success stories.
On Feb 22nd I have my 22nd birthday coming up. Not really a special birthday to many people but I'm conscious at the moment that I should make every occasion that bit special. I'm not so sure if that's a good way to think or not. I won't lie it does cross my mind 'make this one special not just for you but friends and family too, it could be your last' I hate to have to think like that but I just can't help it. I mean what about every other normal person that has a birthday and celebrates it not knowing it is actually their last? Because I know for me it's a possibility that it could be my last does that really make me any different? Ok I'm going to stop there before it gets too deep!
Sending some smiles!
4 weeks ago