Hi my name is Kylie I 27 year old single mum of two amazing little boys, last year was awful for myself and my family, in September 2018 my life completely changed and everyone's life who was close to me specially my childrens.I had been diagnosed with a kidney condition in October 2017 after kidney biopsy, called Focal segmental glomerulosclerosis (FSGS) but it wasn't that serious had monthly check up with consultant at HRI, over the year of appointments and course of high steroids and a medication called adaport it was clear it was a rather slow progressing condition. I still lived "normal life" normal mum duties working part time as support worker for people with physical and learning disabilities.
Then middle of September 2018 I started getting a bad belly ache from my belly button across to my hip on right side, it kept me awake everynight. I started feeling worse and pain spread so was from belly button across my right side around my back and stopped at middle of back. On Friday 21st September 2018, I noticed i was hardly passing urine, and when looked again I knew I had blood in the urine, I didn't tell no one I was scared as knew something was seriously wrong. I told my house mate next day who said hospital now, I kept saying no as I knew deep down if went to hospital I would get admitted and I have never been admitted in my life, but when got sample of urine it was pure blood my house mate more or less frog marched me to hull royal accident and emergency (luckily my children was at their dads). As I thought after hours in a&e i got admitted Saturday 22nd September 2018 all I knew was it was to do with kidneys.
On Sunday 23rd September 2018 I was moved from AAU to the renal ward, which I admit I was terrified still none wiser what was wrong with me expect I was feeling worse with every second that passed, I had never talked to anyone about dialysis or nothing and now I had dialysis machine next to my bed. All I wanted was my DAD his my hero my rock I just wanted a hug and for him to tell me i was going to be ok, and God bless him he was on holiday aboard with his wife for the week, and I got admitted their first day on holiday (even though all my family was amazing and was 100% there for me I had never felt so alone and scared).
Monday 24th September 2018 got told i needed blood transfusion by Dr nothing else really all day, the a staff nurse told me I was having Line fitted, never even heard of a line no one told me.That afternoon I had my line fitted but had been told my children was coming after school so lightened up my day, I didn't get told I had to have plasma exchange and dialysis straight after each other, I was just finishing 18 bags of plasma exchange, when family and children arrived to be told I was going straight onto dialysis machine. As no one was aware i was having that they didn't have chance to explain to children what was up with mum we still didn't actually know anything except it had nothing to do with my fsgs. My eldest sobbed when was me but my youngest stayed strong the dialysis nurses was lovely and told my children what machine was doing and explained it as a washing machine for my blood.
Over the next week I had 18 bags of plasma exchange everyday (1.5hr-2.5hr each time) and 4 hours dialysis every other day, also 2 kidney biopsys, and lost count of blood transfusions.At this point I still wasn't 100% what was going on it was all to much to take in, When my dad got home and had spoken to consultant he explained it in English not big doctors words, It was suspected i had very rare condition called Atypical hemolytic uremic syndrome (aHUS) which is a very rare blood disorder that causes kidney failure. Only thing slowing us down was every test i had done had to be sent to Newcastle for them to approve funding for treatment which is eculizumab. I finally got my first lot of the medication 7th October 2018 weekly for next 6 weeks.
I was well enough to be discharged on 21st October 2018, now I have my dialysis three days a week at 4hours 6minutes each session, and my eculizumab every fortnight, it's getting reviewed anytime now as been 3 months, but dialysis is for life unless get transplant. I feel lot better now but can't work, can't do as much with children it's been very hard.
So I fundraising for kidney research UK because a lot off years ago, there wasn't much hospitals could do for you years ago, for example my dad and auntie lost their mum when my dad was baby he has no memories, but due to research and people funding research found way to keep it undercontrol and I get to see my children grow up, so wanted to give something back, you never know in years to come research might find a cure for this silent life time Illness.
People don't realise how important kidneys are till something like this happens to yourself or someone close to you, Kidney Research UK depends on the support of the general public to fund life-saving research; they receive almost no Government financial support, that's why we need to try raise funds. Kidney Research UK charity very close to my heart as the funded Newcastle to research about my condition so thanks to Newcastle and kidney research UK I am still alive today.
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