“You don’t have to do anything…Just sleep!” These were the words I needed to hear, words of comfort from somone who knew exactly what was about to happen to me. These were the words from a young lady whom I’d never met before that night, the 24th October 2008. A night I remember well. Let me introduce you to the lovely Debbie, who is going to share her journey so far with you.
“Hello my name is Debbie and i’m a renal friend of Holly’s 🙂 We met 6 years ago at the Royal Liverpool hospital, I was in a side ward recovering from the transplant I had recently received. The first time I saw Holly it was with her mum Helen as she was going into the toilet next to the room I was in, I could see a look of nerves on her face and I automatically knew why.. She had been called for a transplant, I knew how this felt so I thought i’d try my best to comfort her, I introduced myself and the other 3 ladies in the room, who had also had transplants, Holly didn’t have much to say as her mum went onto to tell me she was nervous, I remember saying “It’s ok hun, you don’t have to do anything, just sleep” haha i’ve always had a way with words but i’ve always hoped I comforted her the best way I knew how that day, through humour.
I’ve always wanted to write down my experiences and maybe create a blog of my own so asked Holly for some advice, to get me started she asked me to do a guest blog on hers, I asked her what I should write about and she said my story.. so here goes.
When I was 3 years old I was diagnosed with reflux of the kidneys, this meant as I grew my kidneys didn’t, so from that age I had to go to Alder Hey children’s Hospital every 3-4 months so a renal team could keep a close eye on my kidney function.
If you ask someone what their first memory is they usually come back with something like a day at school, one of my first memories is having a tube inserted up into my uretha (down below) I was no older than 4. I have a lot of early memories of my mum taking me on 3 bus journeys to get me to the hospital because she didnt drive, there was a fence that was painted green near one of the bus stops that covered a school, something I had been brought out of to go to get blood tests a lot of the time, I remember wishing to be one of those “normal” kids behind the green fence.
Suffice to say I was a very sickly child, I was in an and out of hospital a lot with water infections and had to learn to deal with pain and sickness from an early age but despite this I was a very happy child and a lot of the time I did not look sick, as most of the people who read this know, Kindey failure is a hidden disease, what’s going on inside your body does not show on the outside, I used to love this fact as a child but as I grew older I learnt of the hinderances.
My Dr’s at Alder Hey (Somtimes Whiston) had always told my mum and I that a transplant was inevitable it was just a matter of time before it had to happen, I was always informed that because my mum told them she would donate a kidney I would never have to go on dialysis prior to this.. how wrong could they have been?
I mananged to live a normal(ish) life until the age of 17 when Alder Hey had to pass my care onto the Royal as I was no longer a child, as this was happening my kidney function dropped to a point were I was severly ill and admitted into hospital, that’s when the dreaded word was spoken.. dialysis, because I had fallen so poorly I was too ill to have a transplant so they advised I would have to start dialysis, I was devastated to say the least.
I don’t want to go too much into detail as there is so much to it so i’ll briefly explain what happened next as best I can, I dialysed through an emergency neck line but hated it so decided I would prefer to do peritoneal dialysis from my own home, regrettably so because as soon as I started doing it I got peritonitis and nearly died, so it was back to heamo dialysis for myself!
4 necklines (I refused to have a fistula, I was young, vain and stupid) Septicaemia and 2 clots later my wonderful Dr, Dr Bakran, arranged for my transplant to go ahead urgently as the second clot that was in my neck nearly travelled to my brain and killed me!
So in October of 2008 I received a transplant, my amazing mother donated a kidney to me, after nearly 4 months in hopsital I was discharged and free, no dialysis, yes lots of tablets and new rules to follow but I had never felt so happy and healthy in all my life, I felt ready to take on the world haha.
I had the most amazing 4 and a half years of my life because of my mothers special gift but unfortunately in April of 2012 the kidney failed due to a BK Virus, something that was, at the time, rare but now something they keep an eye out for, frustratingly so.
So now i’m 26 and i’ve been back on dialysis for 2 years, I had no other option but to get a fistula, but by this point I honestly no longer cared, nothing could hurt more than losing my mums kidney. Luckily I have had no complications and have not nearly died 5 times this time round haha. I’m very lucky to have family members who are willing to get tested to give me a kidney.
I was a week away from getting a transplant off my brother but heartbreakingly so a day before my pre op I developed an anti body that fights against his blood so he is now last resort, but I remain postive that I will get another kidney transplant one day, I have many options, something a lot of renal patinets don’t have, so I am thankful.
Being chronically ill is hard, and its everyday, waking up every morning and knowing you are never going to get better is even harder, no amount of doctors, treatments or hospital stays is going to take it away, its always going to be with me until the day I die, there is no way of making the incurable go away, all I have is hope, hope that one day there will be a cure for this vicious disease, once it takes hold of your life, its got hold of it forever.
So this is my story, it doesn’t have an end because there is no end to CKD. It’s hard not to get anxious when you don’t know what your future holds, when all that’s infront of you is a queston mark, but I know this for sure, it has made me the person I am today.. strong, I understand things that healthy people take for granted, i’ve learnt to appreciate my good days more than anything and the amazing family & friends I have even more so for helping me get through it. The only thing i’m certain of in my life is that I will forever keep on fighting.”
Watch Debbie’s video of her being put on her dialysis machine here. What a very brave and inspirational young lady Debbie is, thank you so much for sharing your story with my readers.