Monday, 10 November 2014

Taking things further.

Today, was the appointment at guys for my results for the GFR test I had a few weeks ago. I had to use my wheelchair again as I feel so weak and drained. My weight is stable and I had another dose of iron.
I see my kidney doctor - Refik Gokmen, and he said results show that the levels of the blood results shown by the GFR are a lot worse than what he had originally predicted and what the other blood tests show. I thought that would of been the case anyway but this just proved that right. He also said that this means transplant should be done sooner rather than later,  talking about 2-3 months time. My mother in law Jackie who is having tests to be my live donor is at Canterbury for those, Refik said he will get in contact with them to hurry things along. No need for dialysis as he would rather go straight to transplant as that makes things a lot easier and better in the long run.
He also mentioned having a pancreas transplant too, along with the kidney, but this would mean having a kidney and pancreas from a deceased donor so then I would have to wait longer and plus the kidney wouldn't be as good as a live donor. I wasn't so keen on this as why fix something that isn't broken also if I have a better chance with a live donor then I would rather do that - makes a lot better sense to me that way.
Refik also said he thinks I should see my physiatrist Mike again as I am feeling really down. I feel really anxious all the time but I have no idea why and I feel guilty about not being well even though I know I cant help it. Just have mad thoughts going through my head right now just probably make it easier to talk through some things with him to take a load off me I suppose.
I am hoping I get my transplant before my birthday in April now at least, so I can be healthy enough to enjoy it properly this year. I am looking forward to not being so bloody tired all the time and I am looking forward to holidays and finally finding a job! Thinking positive is key - I can do this!

Friday, 7 November 2014

Friday night ramblings!

Well, its Friday night and just about everyone I know is out on the piss, even Harry! - except me obviously! I'm actually curled up in bed with the laptop, can't get much more exciting than that ;)
The past couple days have been quite nice actually. Yesterday I managed to get out for a bit, only up to Bexleyheath and even though I was in my wheelchair, I felt like I had accomplished something! First time I've been out in ages besides hospital visits. Had a good nose round the shops and got some hair bits in boots. Today my cousin and his girlfriend and their beautiful baby Paige came over for dinner :) which was lovely, always love seeing the baby.
Monday is getting nearer for my hospital apt regarding my results. Besides that, not sure what the rest of the week holds for me, apart from Friday its Harrys treat, we are travelling to Aldershot and staying in a premier inn for the night, for the next morning its his supercar experience! I have his birthday present arranged for the 24th but can't say too much yet - He is gonna love it!!
I love giving people I love presents, I get enjoyment out of it, always on my family's birthdays and Christmas I cant help but go mad - even on my little pup. God knows what ill be like when I have kids, they will be so spoilt, but I think kids deserve to be spoilt! Not in a brat way but in a good loving way!
Sisters at a party and is due back about 1ish, hoping she isn't drunk as she is sleeping in my room tonight. Don't get me wrong she is a funny drunk but not when I'm sleepy. Sleepy Marie and drunk Millie is NOT a fun mix!! I had a really shitty sleep last night, so I am hoping tonight is a lot better, I hate waking up during the night and thinking time has gone a lot more than it has.
Night night xx 

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!