CKD Stage 5 Badly!

[Clemmy]

Hey everyone I just wanted to share my story, for those who are waiting have hope it will happen.

For two weeks I was throwing up first thing in the morning and after every meal it was horrible. I was so tired you'd think I didn't sleep at night, I'd fall asleep on my girlfriends (at the time) lap on the bus or at home in the middle of the day. My skin was the yellow colour, my nickname was Lisa Simpson or Babybel.

I went for blood tests on Wed 6th April 2011 & that's when it all happened.

Wednesday April 6th 2011: I was 18 and two months away from being 19, I had a missed call from my doctors early afternoon. On my way home to get changed to head back out to go hang out with some mates I called my doctors back, unfortunately the receptionist lady who wanted to speak to me was on her break. Five minutes later when I'm almost home she calls me back telling me to go to Kings College Hospital A+E ASAP....

I get home and tell my uncle (close family friend) that I have to go to King's, he already knew. The doctors left a voicemail on the house phone & he heard it. I packed a bag to go to the hospital along with my Grandma's teddy, on the way to the hospital I call my girlfriend at the time that to meet me at King's ASAP.

I went through A+E with my ex (now best friend), they took my to a room and strapped me up to machines and took bloods etc.... I was terrified...

The doctor came in and asked everyone to leave as no one was immediate family, and only 18, he explains everything I don't remember what he said but the words "Your Kidneys Don't Work Anymore" still ring through my mind till this day and I'm 22 now.

Everyone then came back in and I burst into tears, my parents living in Wales moving there two months before & my brother in Portsmouth for Uni. My best friend called my mum to break the news due to the machines I was connected to, my mum phone her friend who's like an auntie to me who lives next to King's and she came up.

I was then in and out of hospital for all of 2011, from infections to even losing my sight. I'll next forget that experience, I was on Dialysis at home for a couple of months already and this one week my machine was playing up every night. Every night I was awoken by the machine because of an error, on the 5th day of the machine I had a headache for the whole day, took some paracetamol but that was useless, early evening my uncle calls the ward at King's, they tell him to bring me down. We got to the hospital and I had my own room, I remember everyone going home and then going down for an X ray. After having a tantrum of wanting to go back to bed after the X ray I don't remember anything for the next 3/4 days, I'd lost my site n memory but was chatting away but I don't remember anything, they thought I had meningitis ran tests all clear. Lucky I came round. That was my second time close to death, first time was finding out I had CKD I would have died if I hadn't gone for blood tests.

My brother got tested and passed with flying colours. Thank you to the doctors at Guys Hospital we had the operation in March 2012 11months after hearing the bad news. It's now been over two years since the Op and my brother just got back from Australia we're both doing really well. Back to my old but new self.

Remember: Things get worse before they get better and Have Hope.

Clem

[overnighthearingloss]

Wow, at such a young age. Glad its all worked out for you. Do they know what caused your failure? Ie was it something a kidney transplant has solved or do you still deal with a chronic condition.

There is also hope in staving off complete failure for some, sometimes if very strict dietary principles are followed, but its necessary to learn to live with an ongoing altered dietary pattern and lots of care and attention to keeping well as the body is already dealing with so much.

I am the product of the 2nd approach. I had a crisis in 2010 and have in recent years had kidneys functioning at around stage 3b with occasional fluctuations.

Re your transplant. Did they put the replacement in the same place?

Or is it tucked in somewhere else? How long was it before it started to function on its own without any dialysis requirements?

[Clemmy in reply to overnighthearingloss]

It was caused by something to do with my reflux. My new kidney is on the right side of my stomach near top of right thigh. I was lucky because it started working straight away whilst I was on the table.

[Dedalus]

That's a lovely uplifting message - thank you for sharing - probably also taught you to live life to the full, because we never know what's around the corner (but live healthily). Great news.

[Clemmy]

I do my best to keep healthy its hard cause of the medication.

[hairyfairy]

I don`t understand how reflux can cause kidney failure, that`s scary because I sometimes get some reflux!

[sukki]

Thanks Clem

You give us all hope. Good luck for the future Sukki

[robson38]

Lovely to hear your successful outcome at returning to good health. It gives me hope as i am about to have my right polycystic kidney removed. Other remaining kidney only working at 25%. Next year i am having my left one removed and dialysis and will be refered to see the transplant. It will be a long and yraumatic battle but not gt any choice.

[shattock]

Great to hear somebody so positive after all your difficulties. Good luck & keep smiling.