I hope all my readers had a wonderful Christmas and New Year.
2015 has got to be one of the hardest years of my life, I won’t be sad to see the back of it although there were fantastic moments it was over shadowed by sadness and ill health. The start of the year saw me having to say goodbye to a best friend that I could so have done with this year (selfish I know). Emily will always have a special place in my heart and I miss her everyday. I still can’t quite believe she’s not here.
I stopped work at the beginning of 2015 so
I haven’t worked for a whole year now, this frustrates me but I am nowhere near well enough. I struggle standing for long periods of time, have trouble walking and suffer from almost constant nausea and dizziness. I really miss my colleagues and kids and hope that one day soon I’ll be able to do some sort of work. My job has been left open thanks to a very understanding Headteacher but I can’t help feel guilty about leaving people in the lurch. I have also stopped visiting as much as it upsets me that I can’t be there and I’m not part of it anymore.
2015 saw me battle to keep my kidney well enough to go on holiday to Malta but it soon came crashing down when we came back to England. My main hospital admission was with many a complication including a failed graft, the insertion of both a femoral line and neckline and then an operation to insert a new graft. The day I left hospital I remember thinking I didn’t feel this unwell before I started dialysis. I cried because I couldn’t get comfy on the sofa because of my neckline and the graft insertion in my arm. I thought I would never get back any normality and my independence was slowly being taken away from me, my Mum had to wash my hair and A had to help me do the simplist of things like putting my bra on.
Once I got settled into the routine of dialysis 3 times a week at the hospital things started to improve. It was very early mornings with my parents picking me up at 6.45am Monday, Wednesday and Friday. The other days I spent resting and recuperating. My parents bought me a wheelchair which came in handy on my weak days, it meant I could get out of the house for some fresh air. I would still occasionally use it now on a bad day.
My blood count levels slowly improved and I became stable enough to try training for home haemodialysis. I didn’t sleep much the weekend before the training started. It was so much to take in and I had major doubts as to whether I would be able to poke big needles in my arms. 8 weeks of hard work from myself (yes blowing my own trumpet) and of course my Mum we were allowed home. There were many tears along the way and I’m sure there’s more to come but we make a great team and I can’t thank her and my Dad enough for all their support.
As for A, he took and still takes everything in his stride. If he was anymore laid back he would be horizontal. He doesn’t do sympathy but does bundles of laughter, he totally gets me and knows how I tick. We’ve made some wonderful memories this year and I can’t wait for what 2016 has in store.
This year also saw my best friend have a baby and I became her (Isla’s) Godmummy – I couldn’t be prouder!
And always one for drama I thought I would end the year with a bang. Today saw me get my first false alarm for transplant. It was 5.30am when Mum rang me (as they had rang her house phone), my name had come up as being a match for a kidney but I wouldn’t know till later on in the evening whether it would go ahead.
I was told to dialyse at home, I was allowed to eat breakfast and lunch and they would keep me updated. I cried. I’m not sure why I cried, I think it was fear. A handled it like a pro as I snotted all over him. It was all quite short lived as at 1.30pm the surgeon rang me himself and said that it wouldn’t be going ahead. He explained in great detail as to why and I totally agree with the decision that was made on my behalf. The kidney was damaged and although it may have worked there would have been bleeding issues which would have meant multiple trips to theatre.
I’m not going to lie and say I’m not disappointed. In my head for those short hours I was positive (not dillusional) and was thinking of things I may be able to do, holidays, go back to work, be dialysis free. The positives I’m taking is that at least I know I’m on the list and also that a family somewhere said yes to Organ donation and gave me the hope of a second chance.
I still find it hard to get my head around how different life is now to what it was this time last year. I rely on a machine to keep me alive, without dialysis I would die. People say I’m brave, I’m not brave, I have no choice, I want to live.
I believe if you have your health you have everything, I didn’t realise how much so until this year when it was stripped away from me. I want to take this opportunity to thank everyone for their ongoing support. To my parents, family and A there are no words you mean the world to me and I would be lost without you.
Please think about Organ Donation and consider signing the register here: https://www.organdonation.nhs.uk/
Here’s to 2016 let’s make it a good one…