I cant believe it was November when I last wrote anything in here, but to be fair things have been so busy that I havent really had chance! Just to update, Maisy is now home and doing very well, she's now 10months old, time really does fly by. She is still on oxygen at home and this will continue for a while to come, we have attempted to wean it but her lungs weren't having any of it, but thats fine, it's no where near as scary or hard as I thought. People stare sometimes when we're out, and that was one of my main worries, but now I couldnt care less, I have my beautiful girl home and thats all that matters :)
Health wise things arent great at the moment and it's getting me down a bit. I want to be full of beans and not have to have a granny nap most days! Maisy has started saying a few words and is able to stand (holding on) and the day will come soon that she's zooming around and I'm worried I'll be too tired to keep up. It's playing on my mind a lot at the moment espcially this week as blood results from the hospital were not good. I have high level of antibodies which is not good news. Having too many antibodies in my blood means I would automatically reject my new kidney. They are unsure why they are so high but I have to wait till friday to talk to my consultant and will have results more blood tests that they did to double check results. So basically I have just had enough this week. I just want to lead a 'normal' life, so spending half of it at the hospital and the other half so worn out I'm acutally starting to look forward to going back!! I want the phone to ring, I want them to tell me it's my turn now, that my bloods are all fine and everything is going ahead and I'm going to be healthy again.
Despite being a bit down at the moment Maisy makes me smile each and everyday and it's because of her, Liam and my wonderful family that I will not give up and keep the smile fixed to my face!!
Thats all for now, sorry bit of a moan. But I will try to keep this blog a bit more up to date!!
Monday 18 April 2011
Tuesday 16 November 2010
One proud mummy!
Well hasnt Maisy been a busy girl! My little superstar! I am so proud of her, i cannot explain in words. She is not able to spend 22hrs a day off her vent, and only needing 2 hrs of extra help with her breathing, which is great. Her next big challange is the same again, but this time, coming off cpap and going onto just oxygen! When she is on just o2 we can start to think about home time! YAY! At the beginning of this journey i couldnt think to the next hour, let alone the next day, week or month, which lead to me and Liam not really having much stuff for her at home as I was too scared to buy anything. But now even the doctors have mentioned the HOME word! Which means we have nearly everything including the car seat to bring her home in!! :D So to sum up.. read the title! I am one proud mummy!!
I had dialysis yesterday and as usual they took yet more of my blood! Had felt tired, but nothing much else so I was suprised when they said I would have to stay in to be reviewed by my renal team this morning, who had decided to keep me in for anti biotics, and my fluid intake has been restricted yet more which im not impressed about! I'm thirsty!!
It is soon to be Anna's year anniversary, and her birthday soon. I always think about her, but its just made me think more about her these last few weeks, partly because I cant believe its been a year. I miss her so much. Me and the girls will be going up to Badbury Rings where her ashes are scattered on the 28th, sending her some more balloons again. We are also going to be doing some fundraising in a few weeks, we are just deciding on the final details, and all the money will go to the CF trust, so will give people the details to donate money if they wish ASAP. All i hope is Anna is happy and able to breath freely where ever she is. Love ya hunni xx
I had dialysis yesterday and as usual they took yet more of my blood! Had felt tired, but nothing much else so I was suprised when they said I would have to stay in to be reviewed by my renal team this morning, who had decided to keep me in for anti biotics, and my fluid intake has been restricted yet more which im not impressed about! I'm thirsty!!
It is soon to be Anna's year anniversary, and her birthday soon. I always think about her, but its just made me think more about her these last few weeks, partly because I cant believe its been a year. I miss her so much. Me and the girls will be going up to Badbury Rings where her ashes are scattered on the 28th, sending her some more balloons again. We are also going to be doing some fundraising in a few weeks, we are just deciding on the final details, and all the money will go to the CF trust, so will give people the details to donate money if they wish ASAP. All i hope is Anna is happy and able to breath freely where ever she is. Love ya hunni xx
Tuesday 2 November 2010
Oh what a night!
I am 100% completly and utterely knackered! Exactly what the title says, oh what a night! Where do I start? Last night i came home from seeing Maisy as usual, had my dinner, a bath, read some of my book and went to bed, all pretty boring normal stuff! As soon as my head hit the pillow I must of been asleep.. Then at half one my phone rang, I have two phones, and the one that was ringing only has one purpose, transplant. However, as with me nothing is ever simple, and complicated tends to be how my life runs. Few days ago, this same phone rang and I thought my heart was going to burst out my chest when I answered it, only to find out it was some random bloke asking to speak to 'Dave.' So last night when my phone rang, I was suprisingly calm, partly because I was half asleep, but also I mostly expected it to be a wrong number. So when I answered it I was in utter shock, but tried very hard to stay calm, which I'm not entirely sure I managed! After I'd done on the phone I rang my mum who was here in a flash.
On the way to the hospital my mum tired to make conversation but we were both finding it hard. I am so grateful to be recieving this chance, but the big thing I've struggled with is that someone else's family is greiving for their loss, yet my family will be happy (yes scared, but happy will be an emotion) yet another family, during probably one of the worst times of their lives has allowed other lives to carry on living.
When we arrived I didnt quite realise the wait we would be in for. I had numerous tests, was weighed, many mnay bloods taken, doctors and nurses in and out, signed consent forms and then we were left to wait. Waiting to see if their kidney and pancrease were suitable for me. I'd rang Liam in the meantime, who came and joined us in the waiting game. I was so tired, but couldnt relax enough to rest, but then who could? I couldnt stop thinking of the other family somewhere in the country who had just lost their loved one, and it made me feel privliged that this person had wanted to donate their organs, and about the amount of other people that would be sitting waiting just like me, would they be feeling the same? Hoping they had their family with them, like I did, chatting about rubbish! Nothing in particular, just keeping the conversation going! Liam bought travel connect four with him.. very useful!
We waited and waited and people popped in and out but never with any info, just to check up on us. Every time the door came open I felt like my stomach was in my mouth and my heart started racing. Eventually the door opened for the final time, it was my surgeon and a nurse and the transplant co-ordinator. The kidney was not a suitable match, and even though the pancrease was, I needed a pair, so it was not to be today. I didnt cry, but I was upset, I think it was all the waiting, the build up and by the time they'd come in to tell me it wasnt to be, I think I'd managed to get my head around it all. However, this does mean, I have now had my practice run, and I am prepared. I am ready for my new life, my new life to be healthier, and to have Maisy at home, happy and healthy. I hope the call which can change it all is just around the corner.
Thank you to all my friends and family, for your calls, texts and messages of support, you are all great!!
Kate xx
On the way to the hospital my mum tired to make conversation but we were both finding it hard. I am so grateful to be recieving this chance, but the big thing I've struggled with is that someone else's family is greiving for their loss, yet my family will be happy (yes scared, but happy will be an emotion) yet another family, during probably one of the worst times of their lives has allowed other lives to carry on living.
When we arrived I didnt quite realise the wait we would be in for. I had numerous tests, was weighed, many mnay bloods taken, doctors and nurses in and out, signed consent forms and then we were left to wait. Waiting to see if their kidney and pancrease were suitable for me. I'd rang Liam in the meantime, who came and joined us in the waiting game. I was so tired, but couldnt relax enough to rest, but then who could? I couldnt stop thinking of the other family somewhere in the country who had just lost their loved one, and it made me feel privliged that this person had wanted to donate their organs, and about the amount of other people that would be sitting waiting just like me, would they be feeling the same? Hoping they had their family with them, like I did, chatting about rubbish! Nothing in particular, just keeping the conversation going! Liam bought travel connect four with him.. very useful!
We waited and waited and people popped in and out but never with any info, just to check up on us. Every time the door came open I felt like my stomach was in my mouth and my heart started racing. Eventually the door opened for the final time, it was my surgeon and a nurse and the transplant co-ordinator. The kidney was not a suitable match, and even though the pancrease was, I needed a pair, so it was not to be today. I didnt cry, but I was upset, I think it was all the waiting, the build up and by the time they'd come in to tell me it wasnt to be, I think I'd managed to get my head around it all. However, this does mean, I have now had my practice run, and I am prepared. I am ready for my new life, my new life to be healthier, and to have Maisy at home, happy and healthy. I hope the call which can change it all is just around the corner.
Thank you to all my friends and family, for your calls, texts and messages of support, you are all great!!
Kate xx
Friday 24 September 2010
A place to vent!
I started off thinking I should say sorry for always appearing to be grumpy and moaning, but I've decided I make no apologies for this as it's my blog, I find it helpful, it's a place I can vent without someone else having to listen to me! So if you're choosing to read this then, you are choosing to hear me moan!! ;)
Maisy's due date would have been a week on Tues (5th Oct) very strange that she's nearly 3 and a half months already. She is still doing well, but progress is slow, and thats hard. She is slowly spending longer off her ventilater and the hope is in a few weeks time she should be totally on CPAP, which would be great as that's one step closer to HOME!! I can't wait to be a 'proper' mum to her, I want to be able to change her nappy on my own, put her clothers on, giver her a bath take her out, just you know.. normal things! But then again at the moment what is normal about my life! What is normal!!
I have my assessment for transplant on Tuesday and I'm not sure what to think about it all? I dont know anyone personally that has had a transplant and sometimes I wish I did, nurses/docs always have answers but nothing personal, always clinical. Everything at the moment just seems to hard, my other kidney is starting to play up and that's meant to be my 'good' one! Kidney function going down becuase its having to work so hard to make up for my useless one!
I hope Anna is working some of her fairy dust magic up there on her cloud! I really miss her, especially while I'm in this place. I honestly don't know how she did it! She was amazing.
On a plus point, I'm going out with my girlies tomorrow for dinner, :) role on tomorrow night.
All for now. Kate
Maisy's due date would have been a week on Tues (5th Oct) very strange that she's nearly 3 and a half months already. She is still doing well, but progress is slow, and thats hard. She is slowly spending longer off her ventilater and the hope is in a few weeks time she should be totally on CPAP, which would be great as that's one step closer to HOME!! I can't wait to be a 'proper' mum to her, I want to be able to change her nappy on my own, put her clothers on, giver her a bath take her out, just you know.. normal things! But then again at the moment what is normal about my life! What is normal!!
I have my assessment for transplant on Tuesday and I'm not sure what to think about it all? I dont know anyone personally that has had a transplant and sometimes I wish I did, nurses/docs always have answers but nothing personal, always clinical. Everything at the moment just seems to hard, my other kidney is starting to play up and that's meant to be my 'good' one! Kidney function going down becuase its having to work so hard to make up for my useless one!
I hope Anna is working some of her fairy dust magic up there on her cloud! I really miss her, especially while I'm in this place. I honestly don't know how she did it! She was amazing.
On a plus point, I'm going out with my girlies tomorrow for dinner, :) role on tomorrow night.
All for now. Kate
Thursday 2 September 2010
Dialysis dialysis kidney function and more crap!
I make no apologies but just start this with a warning i'm grumpy, and not happy and I'm going to have a moan. So as most of the people who know me know I do try my very best to keep smiling and plodding on, but i just cant today.
Starting with a positive...Maisy is trying her hardest and is making good progress and although im feeling grumpy today she is able to make me happy. She makes me proud every moment of every day she has put up such a fight and I'm still convinced Anna is helping, as mad as you may think, I'm certain she is! Her sedation has been reduced enough and she has managed two lots of an hour and half off her ventilator!! :D She went onto somehting called CPAP which helps with her breathing but doesnt breath for her. I am so so proud of her. :)
I've had another kidney infection and although this time I didnt have to stay in hospital the whole time which is always a bonus this time round it was painful. I'm now on dialysis for longer periods, and all in all totally fed up. I have a lovely daughter and I should be really happy, we should both be at home we should both be with liam yet none of those things are even close to happening... I'm trying my hardest with everything yet my kidney function is basically 0! I just want to have a life that doesnt envolve entirely around a hospital!!! If im not being admitted, i'm having dialysis or appointments, and if i have one whole day im not here for me, i'm here to see Maisy. Anna always used to say she was in prison when she was in hospital but I always laughed.. now i'm starting to agree!!
But i would like to end saying thank you to my mum and my wonderful friends for all their support and love. You are all fantastic. Thank u xx
Starting with a positive...Maisy is trying her hardest and is making good progress and although im feeling grumpy today she is able to make me happy. She makes me proud every moment of every day she has put up such a fight and I'm still convinced Anna is helping, as mad as you may think, I'm certain she is! Her sedation has been reduced enough and she has managed two lots of an hour and half off her ventilator!! :D She went onto somehting called CPAP which helps with her breathing but doesnt breath for her. I am so so proud of her. :)
I've had another kidney infection and although this time I didnt have to stay in hospital the whole time which is always a bonus this time round it was painful. I'm now on dialysis for longer periods, and all in all totally fed up. I have a lovely daughter and I should be really happy, we should both be at home we should both be with liam yet none of those things are even close to happening... I'm trying my hardest with everything yet my kidney function is basically 0! I just want to have a life that doesnt envolve entirely around a hospital!!! If im not being admitted, i'm having dialysis or appointments, and if i have one whole day im not here for me, i'm here to see Maisy. Anna always used to say she was in prison when she was in hospital but I always laughed.. now i'm starting to agree!!
But i would like to end saying thank you to my mum and my wonderful friends for all their support and love. You are all fantastic. Thank u xx
Tuesday 24 August 2010
Good and excting news!
Hello! As a wise person once said good things come to those who wait! And i'm sure my little guardian angel I have had something to do it it! I was really missing Anna yeterday and was making me really unhappy as it suddenly dawned on me how long its been and how soon it will before it will be a year, and two and 5 years ect, but i had a little chat with her, (I'm sure I looked mad!) plus wrote on her wall to get it all off my chest and then after that although I was still missing her like crazy good things started to happen!! So, my good and exciting news!!! Fingers crossed on Wednesday Maisy can come off her vent! I am so excited and so happy i cannot wait to get that tube out of her! When she comes off her ventilator she will have something which is called a CPAP and it will help her breath but not breath for her!! Woo!!! :D Also it will mean (hopefully) more cuddle time!!
I have also found out that I have now been refered for transplant assessment to sort this damn kidney of mine out! Not sure how i feel about it though. Strange very mixed feelings, although i hate being on diaysis all the time and it stops me spending those extra hours with Liam and Maisy or doing anything else I'd like to be doing..while i would love for that to stop (which a transplant would do) The thought of having a part of someone else inside of me is a werid feeling, and yes it's something that I have accepted has to happen for me to have a 'normal' life and be able to give all my time and attention to Maisy but not 100% sure how i'm feeling about it at the moment. Before I got pregnant I was nearly on the active list, but needed few more tests, because that never happened (as you cant be on the list while pregnant) I have to go nearly back to beginning as my kidney function has got worse.
So all-in-all a day full of change but a good day!! Exciting things are starting to happen now with Maisy and I cant wait to be a proper mum to my little girl. She is amazing. I've also seen her beautiful eyes too!!
All my news for now.
Kate xx
I have also found out that I have now been refered for transplant assessment to sort this damn kidney of mine out! Not sure how i feel about it though. Strange very mixed feelings, although i hate being on diaysis all the time and it stops me spending those extra hours with Liam and Maisy or doing anything else I'd like to be doing..while i would love for that to stop (which a transplant would do) The thought of having a part of someone else inside of me is a werid feeling, and yes it's something that I have accepted has to happen for me to have a 'normal' life and be able to give all my time and attention to Maisy but not 100% sure how i'm feeling about it at the moment. Before I got pregnant I was nearly on the active list, but needed few more tests, because that never happened (as you cant be on the list while pregnant) I have to go nearly back to beginning as my kidney function has got worse.
So all-in-all a day full of change but a good day!! Exciting things are starting to happen now with Maisy and I cant wait to be a proper mum to my little girl. She is amazing. I've also seen her beautiful eyes too!!
All my news for now.
Kate xx
Friday 20 August 2010
It's my blog and i'll moan if I want to.. but first I will introduce myself!
Right, first things first. My name is Kate and I am 24. I have a wonderful boyfriend called Liam, and together we have a beautiful baby girl called Maisy. I have decided to keep a blog mainly for myself to vent and moan and grumble, in the hope I can keep my smile fixed on my face! But also so I have some where to record my thoughts and feeling so one day I can look through it with Maisy :)
There's a reason my blog is called Me and my complicated life! I am quite complicated! I have diabetes and end stages of kidney faliure so have dialysis 3 or 4 times a week. At the begining of this year I found out I was pregnant, because of complications Maisy decided to come to view the world early and was born 24 weeks on the 16th June. She is wonderful and during the last couple of weeks me and Liam have been able to hold her and it is FANTASTIC!! :-D
Liam, Maisy, my family and friends are the most important people to me. I have amazing friends and family who are all very supportive and I love them all to bits! I live with one of my bestest friends, Meg (although I know split my time between home, hospital and Liams!) I also have my own guardian angel, Anna :) she passed away last year and i miss her every single day but her fighting spirit is rubbing off and i'm sure she is keeping an eye on Maisy.
I think that is enough for now! But in summary my name is kate and it's often said i lead a complicated life! But it's my life and although complicated I love everyone in it!
Bye for now! Kate xx
There's a reason my blog is called Me and my complicated life! I am quite complicated! I have diabetes and end stages of kidney faliure so have dialysis 3 or 4 times a week. At the begining of this year I found out I was pregnant, because of complications Maisy decided to come to view the world early and was born 24 weeks on the 16th June. She is wonderful and during the last couple of weeks me and Liam have been able to hold her and it is FANTASTIC!! :-D
Liam, Maisy, my family and friends are the most important people to me. I have amazing friends and family who are all very supportive and I love them all to bits! I live with one of my bestest friends, Meg (although I know split my time between home, hospital and Liams!) I also have my own guardian angel, Anna :) she passed away last year and i miss her every single day but her fighting spirit is rubbing off and i'm sure she is keeping an eye on Maisy.
I think that is enough for now! But in summary my name is kate and it's often said i lead a complicated life! But it's my life and although complicated I love everyone in it!
Bye for now! Kate xx
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