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!
Sending some smiles!
4 weeks ago