Well I have just finished watching Kirstie Tancock’s documentary on BBC 3 “Love on the transplant list” and I found it so inspirational so this blog is going to be a bit of a contemplative blog. If you haven’t seen it you really need to it’s available on BBC iplayer it’s really amazing what she went through. She has Cystic Fibrosis which isn’t what I have but going on the list and all that stuff is something I can relate too.
Recently I have been down I’m always positive, I am, but it’s been over 6 months since I was put on the transplant list and I think there was this little piece of me that thought I wouldn’t have a to wait that long. That I had been lucky enough to make it this far. I know people will be like what do you mean you’ve been lucky because from the outside it doesn’t seem that way, but Doctors always told me I would be lucky to make it to 5 then when I was diagnosed at 11 people with PH were still only living a few years so yeas I consider myself lucky. So carrying on I thought that maybe I’d been lucky enough to make it to 21 that maybe I’d get lucky and get a transplant soonish. I do realise that 6 months actually isn’t that long in the grand scheme of things but when you’re dying 6 months feels like a lifetime, I even know a few people who have been waiting a lot longer than me my friend Kath has been waiting 13 months now. It’s officially the crappest waiting game EVER!
Something I did take from the documentary is something Kirstie said at the end when she said she had forgotten how ill she actually was before her transplant. Its true people with terminal illnesses who don’t actually look ill, unless you have thee oxygen or tell tail signs of being ill, can forget I know I do. I’m so busy telling people I’m fine I forget that I’m actually not. When I go out with people who don’t actually realise how bad I am who I don’t regularly see. I try to keep up or I try to pretend like I can do exactly what they are doing and that’s when it hits me that I’m horribly ill. I can barely walk down the road anymore without needing a 5 minute rest or needing to sit down. The disabled parking although closer to where I need to be still seems like a mile walk away and by the time I get to where I need to be it actually would seem from the outside that I look like I’ve just run a marathon.
I don’t think even my family realise how bad I actually am. (Obviously not my parents and sisters). They all know I’m on the transplant list but when they see me they still see what would appear to be a relatively well person and when they ask how I am I will always reply that I am fine. Because really who needs to hear “actually I feel like shit”. What do you say to that?
It’s given me a little more hope though because Kirstie was quite literally at deaths door and she still got her chance I just hope it doesn’t come too late.
If you haven’t seen the documentary go watch it on BBC iplayer here and go check out Kirstie’s Blog here it has everything from pre transplant and post transplant and all the amazing things she’s up to nowadays :-). And if you aren't already please go sign up to be a donor here it saves lives and really ask yourself if you were in the situation people like me are in would you take an organ because if the answer is yes then there is absolutley no reason for you to not be a donor.