normal conversations...

Tonight I talked to someone on instant messenger, although we've met on a couple of occasions we don't know each other that well and very rarely talk. He is a normal 20something guy going about a normal life, the conversation is pretty self explanatory, to me it was eye opening as to just what 'being normal' is and how important it is to get the message across about organ donation. I'll leave you with conversation we had:

P says: ahhhh cool erm where do you actually fill in the forms for being an organ donor?
Rachy says: I take it that means you aren't on the organ donor register then?
Rachy says: http://www.organdonation.nhs.uk/ukt/default.jsp
P says: not yet been thinking of going on to it for a while now but was busy with job hunting
Rachy says: whilst your busy job hunting the hospital are busy trying to find me an organ donor in time to save my life, just think about that one?
P says: opps my bad major guilt trip
Rachy says: I'm sorry it wasn't intended as a guilt trip, organ donation is a personal choice
P says: its ok, no worries I'm not guilt tripped to be honest because I know there's a few people out there who don't even consider signing up
Rachy says: 96% would if they could just get round to it, imagine if they or you were in my position, I'd bet if you needed an organ to save your life you'd accept one but would you take the time to sign up to give one? it seems the answer to that is already obvious doesn't it? *gets off soap box*
P says: Yeh, I see your point now, I'm in the middle of signing up
Rachy says:
:)

I did it!

Well I've waited quite along time to write this blog and now I have no idea how to word it?

I did it? I made it onto the transplant list, I'm now active on the transplant list waiting for a double lung transplant. It doesn't even seem real to type that, I don't think it's actually sunk in yet, that I will actually get new lungs and I will live. That is if a donor is found for me in time.

My news came yesterday afternoon after a tearful morning. I discovered that one of my friends Joanne had passed away in the night, Jo was on the transplant list waiting for lungs. She had had a tough time getting listed herself , I supported her through that. Just a few hours after discovering she had passed away I went active on the transplant list, life at times puzzles me so much.So off I went to clinic yesterday, we got there early and stopped in the cafe for a coffee then almost got lost in the corridors trying to find our way to clinic. My co-ordinator was hanging around in the waiting room, I don't actually get to see her that much, she doesn't do my consultant's clinic that often so it was nice to catch up with her I asked if my tissue typing was back and she said it was. It was at that point the penny dropped and I thought 'oh god, there is actually nothing stopping me going on the list now...' But I put it out of my mind and got talking to a lady beside me who had Alpha 1. She had been on the list 2yrs already.

I went in to see my consultant and he went through last minute details mentioning my gallstones could be due to weightloss and so on. But that there was no inflammation in my gall bladder and it looked ok, I did, if I admit, zone out a bit, as a watched the goings on out of the window a stark comment brought me back to my chair "shall we just do it then? Shall we go for it and get you on the list? stop dragging our feet ah?" before I could collect myself to think of a sensible reply I just raised my eyebrows and simply said "erm yes please?" and that was that. The appointment was no longer than 10minutes, I bumped into my co-ordinator in the corridor and she shouted "Rachael?" and put her thumbs up and I nodded and put mine up. The co-ordinator that was in with us took my 'transplant line' number. I have put an unused sim card into an old phone and I'm reserving that number just for transplant calls. Just so I don't jump everytime there's an unknown number flashes up on my phone!
Which at the moment is happening alot because the lovely Sarah Milne kick started the LLTGL Christmas appeal today with a press release on my story (click here to view it). My mobile has been ringing off the hook! The MEN have snapped up my story and are coming round for a photoshoot tomorrow.
So that is it now, now I wait, wait for a donor, for a hero to save my life. My story is now also on the LLTGL website, go have a look here. If you sign up to the organ donor register you could be my hero so go sign up here!

I'll leave you with a picture that Sammi took last week during the photoshoot, many more to come.

Crazy life!

My life at the moment seems to be all or nothing. Literally for the past week I have sat twiddling my thumbs doing nothing, then the last couple of days it seemed to all come at once.
Yesterday I called the transplant co-ordinators to check they had my ex-vivo consent forms and also for a bit of a catch up. No sign of my blood/tissue typing results yet, I can't go on the transplant list, officially until they come back. I've been waiting 3 weeks now. Whilst on the phone I asked for the number for the transplant dietician. I met her during my assessment and she had alot of understanding. I have struggled with my appetite for the past couple of weeks, then to top it off I caught a sickness bug last weekend and wasn't even able to keep fluids down properly for a couple of days. That combined with pretty poor intake as it is has meant I've dropped another 7lb that I didn't really have to drop in the first place and haven't bee able to regain. Being a bit on the small side is something very new to me, as a child I was always a good weight then as a teen I went on prednisolone and well from that point on there was never any worries about me being underweight (those on prednisolone will know what I mean ;-)
I had a chat with the dietician anyway and she advised going to my GP for better anti sickness medication. But it isn't just sickness and nausea that are the problem, after I've eaten pretty much anything now I feel bloated and unable to catch my breath, it is a battle at the moment and it isn't one I ever anticipated. And 'little and often' really is of no use to me.
So following my chat with the dietician I got a call today from the co-ordinators, my consultant now wants to see me ASAP before I go on the transplant list, I have an appointment for about 10 days time. Hopefully around that time my blood results should be in as well. So that didn't worry me too much, the part where she said "to check your well enough for transplant now" did. Weightloss in ILD is a sign of progression. I can't not be well enough to be listed for a transplant, I've come too far so I intend on doing something about it. I put as much effort in as I can into eating and it's getting me nowhere alone, it just isn't easy anymore and it's not even something that comes natural, I see food now like medicine, something I have to take but there's no enjoyment in taking it, my lung disease has taken that enjoyment away. So now I'm seriously looking into nasogastric feeds as an option, they could run overnight whilst I’m on my bipap and breathing wouldn't be so hard then. If anyone has any info about this I'd appreciate it.

Next week, hopefully, I have a photoshoot at the hospice with the beautiful Sammi Sparke for her photography degree. For some reason she thinks my mug shots will win her a prize haha!

I've also agreed to do a media feature at some point in the next week for the charity Breathe On UK. With the case of baby RB being all over the media this week Breathe On have had alot of coverage, they support families affected by long term ventilation. So watch this space.

On Wednesday I also have a CT scan to get to the bottom of these lung bleeds which are yet to subside.

Thursday, I have day hospice, I've been helping out with the St Christopher project there, which came about at the hospice thanks to a lovely lady who I was great friends with (click here and she's mentioned at the bottom of this blog along with why the St Christopher project is vital to school children) she passed away just a couple of months ago. Basically the project myth busts over what hospices are actually for. And tries to get the message across to the public that they are actually a place of life.

Busy times ahead!

This week saw the launch of the powerful new campaign by NHS blood and transplant in bid to highlight the need to act on good intentions.
''The campaign aims to increase significantly the number of people on the organ donor register, asking what we would do if someone we love needed an organ: if we would accept an organ, shouldn't we be prepared to give one?'
More to come later, for now I shall leave you with the very powerful advert which we should be seeing more of on TVs soon.
Link to YouTube.