What an amazing year 2016 has been… at the beginning of the year I didn’t think it would be anything special, my health was at rock bottom, many friends drifted away, I gave up studying for my Masters and was still unable to work.
In April with the support of my parents Aidan and I moved into our little house. I had to move out of the flat as the stairs were just too much after dialysis. We have settled in and have got it how we want it, we love entertaining people!
Things with my health declined from there with many hospital admissions and procedures. After the most difficult months in August and September (and a cancelled holiday abroad) in October my Mum selflessly gave me one of her kidneys. I will never be able to thank her and will be eternally grateful. Although things aren’t perfect for us just yet they have improved and for that I am truly thankful. She Is my Mum, best friend and hero all rolled into one.
Finally on the 12th of December Aidan asked me to marry him. Of course I said yes. He has been amazing throughout my ill health and I’m looking forward to him getting to know the healthy version of me (we only had 6 months of that when we first got together and things went downhill). I can’t wait to plan the wedding and become his wife! He makes me laugh everyday and has kept me going through the most
In 2017 I will strive to be a better person. Try and do more charity work for causes close to my heart. I will not be hung up on the friends that forget about me when it comes to meeting up or nights out. I will get fitter to give my kidney the best possible chance of lasting. I won’t get hung up on how fat my face is because of the steroids. But most of all I will look forward to making new memories with the ones I love.
I want to say thanks to my parents as always, Aidan and the friends that still visit and have time for me.
Thanks to the Doctors, surgeons, nurses and health cares at The Royal for all their care and support for both me and my family.
2017 will see me celebrate my 30th birthday, a holiday to Crete, hopefully some wedding planning and maybe even a hen do… who knows!
I hope you all have a Happy and Healthy New Year!
Thanks to my amazing Mum (and best friend) I will be leaving hospital today. My kidney is function is improving daily and the result they focus on creatinine is falling everyday! I will never be able to thank her enough for the new life she has given me. Thanks to everyone at The Royal for their care as always and the amazingly talented surgeons who made this happen. There’s still a long road to recovery to go but I can’t wait to get home and start it with those who I love. Thanks to everyone for their messages/cards/pressies and my family and Aidan for their unwavering support as always. Love you to the moon and back Mum ❤ x
On Monday my lovely Mum went into surgery to selflessly donate her kidney to me. No words will ever be enough to thank her. The photo below is from today .. 2 days after surgery. Still lots of hurdles to climb with a sleeping kidney and a dose of pnuemonia for me to battle but we will get there. Love you so much Mum, would be lost without you. Thank you for this special gift, I intend to treasure it xx
Thank you so so much for all your lovely comments, both Mum and I appreciate them very much and it’s so lovely to hear people say nice things about my Mum. I’ve always known she was special but this gift is something else.
So while the cat is out of the bag I thought I would let you In on some things I am most looking forward to. Although it is possible the date may change and also the operation can be cancelled for other reasons on the day too, so we are still being optimistically cautious.
I’m looking forward to:
Having a normal Bath or shower – not having to worry about getting my neckline wet.
Drinking as much as I want (not alcohol just fluid in general)
Eating whatever I want – not worrying about potassium and phosphates.
Having a wee! I have about 2 a day at the minute but there’s no volume there, it’s just because the urge is still there.
Walking. Going shopping. Taking Buddy for a walk. All without getting tired.
Weekends away. Holidays.
Not waking up in the morning in pain, or feeling I could sleep for another 8 hours.
Finally, being free from dialysis.
Transplant isn’t a cure just another form of treatment, although there will be a strict follow up and drug regime (with some lovely side effects) it is a small price to pay for the quality of life I will get back.
This list is only the start and doesn’t include the changes it will make to my families life either. I realise how lucky I am to have been given this opportunity and realise how special my Mummy is xxx
So when you go to clinic and the doctor says we are running out of options you know it’s not a good a sign. This was back in June. My dialysis access was not improving with all of the procedures and it was also becoming dangerous to the rest of my arm and hand.
Live donation was mentioned again. As regular readers of my blog know I have always been against this. I don’t want someone I love to go through an operation they don’t need and all the risks that come with it.
However when access became such a huge issue I agreed that my Mum could go through the testing to see if she would be suitable to be my donor. This was a big decision for me but Mum didn’t hesitate and jumped at the chance.
In August the worst happened and my graft clotted off, I had a neckline fitted and Mum’s tests were rushed through.
We had to cancel our holiday and dialysing at home was no longer an option. Things seemed to be going from bad to worse. My neckline didn’t seem to want to play ball either and has had to be manipulated back into place twice since I had it put in.
All the while each of Mum’s tests came back with good results. Part of me wanted them to say she couldn’t do it so it got her off the hook, part of me was thinking about all the things I may be able to do again if things were to go ahead. I also thought about the effect of the operation on my Dad and A but also conflicting with the fact that my parents would also have more of a life if things were sucessful.
4 months of testing and here we are. Everything is a go. My Mum is giving me a kidney. I still can’t believe I am writing that let alone that it is going to happen…. this month!
Lots of thoughts going on at the minute, worry for my Mum mainly. How do you thank someone for being so selfless and giving me life… for a second time! She is my Mum, best friend and now my hero. I intend to do everything I can to look after my new little kidney bean and I am looking forward to many happier times ahead all thanks to my Mum. Thank you will never be enough.
I’m not going to reveal the actual date of our operations but A or I will keep you up to date when we can on both Mum and I.
So things went royally pear shaped. I was doing so well needling myself with very few problems, I had managed nearly a whole month at home.
Then last Thursday I tried to needle myself, my lovely nurse who will be known as M just happened to be there dropping supplies off. I kept getting flashback on the needles so I knew I was in the right place but the blood was black. It had gone, clotted off. I racked my brains to think if I had done anything different the day before, banged my arm or done any lifting. I hadn’t, sometimes it just happens – so frustrating!
I went to A & E. Saw various doctors, had a scan to confirm that it had clotted off and stopped working. They tried to get blood off me from various places and I ended up with a cannula in my foot.
To cut a very long story short. My graft is beyond repair. It has had so much work on it that it can no longer be fixed. So I have myself a very attractive new accessory… picture not for the faint hearted.
Last time I had a neckline inserted I was asleep, I had eaten this day so they couldn’t even sedate me. This has been the most horrendous procedure I have ever had done (even after the angiojet to unblock the clot last time). Not ashamed to say I cried… I like to think I am brave but I totally wasn’t. It didn’t help that they inserted one neckline and it was too long so they had to pull that out and insert another one! When they did this they trapped some air and my sats dropped (level of oxygen in my blood) and I felt like I couldn’t breathe.
I was put on oxygen and had to be observed for 5 hours. Once it was all over I almost instantly went to dialysis. Amazingly I was let out the same night and didn’t get home until midnight.
The pain over the next few days wws excrutiating. Paracetamol just wouldn’t touch it. I couldn’t get comfy, couldn’t lay down and couldn’t sleep. I stayed at my parents house and spent 2 nights on their reclining sofa. The pain is starting to ease and I can lay almost flat now. I’m adjusting to life with a neckline now – it feels like a lot of my independence has been taken away though. I can’t wash my own hair as I can’t get it wet. I can have a shower round it and a shallow bath and swimming is a no no.
I am currently training alongside Mum so I will be able to dialyse at home again, the procedure compared to the graft is completely different so its hard to unlearn that and relearn this. But we will get there.
Thanks to nuse M, Aidan and the olds as always for their invaluable support. Things may have gone pear shaped but I know I am a lucky girl.
”You will lose friends, you will gain friends, but what matters is that you never lose yourself. Our limits do not define us, but they are a part of us and we must recognize not just our own but the limits of others as well.”
This is taken from a really interesting article which can be found here, it really resonates with me :http://themighty.com/2016/08/responding-to-friends-who-dont-understand-your-health-limits/
Although dialysis is going well at the minute I am finding my energy levels are absolutely shot and my physical ability due to pain in my legs is restricting me. This doesn’t mean I am going to sit in the house and not do anything, if you are friends with me on Facebook you will see I still go out and about.
A and I have become very good at adapting days out, ocassionally I will use my chair or we will go somewhere that doesn’t involve much walking (usually walking from bench to bench). If I’m not well enough to enjoy a day out but want to get out the house, A will take me for a drive. What Facebook doesn’t show is the recovery, how long it takes me to get back on track if I’ve used all my energy on a day out.
I refuse to sit about and let kidney failure define me but I do need to recognise I have limits, but I can adapt the way I do things.
I really appreciate the friends that still visit and still invite me. It means the world. Those that don’t, it’s their loss.
I will not lose myself.