Monday, 3 November 2014

Quick update!

Its been a while since I last posted, so I do apologise for that! Quite a bit has happened in that time so let me fill you in!
I had my fistula fitted on the 26th June, and that healed really well and is now ready to use when I need it (more on that later). Also had my second gastrostomy fitted too, and my weight is slowly creeping up! Had my first one for 19 years, had it removed for 3 now its back but all going fine regarding that too, getting it swapped to a mic-key in December as I now have a PEG right now. Can't wait for that, as it will be so much easier, I have got used to it again already - not that I want it there of course!
Transplant side of things, mum got tested, Harry (my boyfriend) got tested and Jackie (Harry's mum) got tested to be my live donor. My dad isn't well enough and my sister isn't old enough - have to be over 18, she's only 17. Mum wasn't able to as she found out she has kidney problems herself, she was so upset, but like I said to her its not the end of the world, we have other donors and if not I can wait like I did for my lungs. Luckily Jackie and Harry were both matches too. They decided between them that Jackie would go ahead with all the tests first and if at any point she was unable to go ahead, Harry would then step in. How lucky am I :)
Last time I went kidney clinic they were saying things are 'stable' and no need for dialysis or transplant just yet, but won't speak too soon, as I feel so grotty. All I do is sleep, I have no quality of life at the moment, and I feel so down by it all. I am so sleepy and physically weak constantly I am finding it so hard to live a 'normal' life. I feel not many people understand how hard I'm finding this but then I wouldn't expect them to.
I am lucky I can rely on Harry and his family to be there for me besides my mum, dad and Millie. Shame goes for some other members of my family, not even a single text to see how I'm doing. Same goes for certain so called friends too. Little things like text or a phone call go a long way to me, but fortunately for me I'm not selfish or inconsiderate like that.
I had a GFR test last month to check my kidney function in detail at St Thomas's and I get the results on the 10th with the kidney docs back at Guys and that should tell me how close I am to needing dialysis or a transplant hopefully. I have also been given iron and EPO injections to boost energy and that has not worked for me either, I just really need something to be done now.
Moving on to other things besides my silly kidneys - I am now ombre :) loving it, and wanna be even lighter already! I booked Harry a supercar driving experience for early Christmas present and I think I am more excited than him :) he deserves the world for what he does for me and I couldn't be more happier than I am with him. Talking of Christmas - I am so excited! I love the whole thing - all the music in the shops, the lights, all the festivities lol. I am such a kid!! So exciting, MAYBE I'll have my new kidney by then? Wishful thinking ey!

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