Ellie-Mai A kidneys Journey

10/09/2024

Arteriovenous Fistula

So in April I had a fistula placed in my forearm under local anaesthetic, weirdest experience ever being in a theatre awake but with drapes over my arm loads of anaesthetic injected into the area and a couple hours later there was a flow of buzzing like a faint electric toothbrush.

It’s a connection between an artery and vein so I can dialyse in a more efficient way. Having a line may be less evasive for those who have a fear of of needles and short period of easy access of doing heamodialysis, however infection risk is higher and the concern for clots within the central line from constant use.

So every dialysis session I’m connect via two needles one venously and the other arterial both in the veins of the arm of the fistula. Had blood will flow out wash around the machine and come back in all clean and pure.
I am needled with the guide of an ultrasound so they can see the fistula veins and artery more clearly and know where to needle without causing irritation or for the fistula to blow.

Having a fistula can be painful and sore process, I wouldn’t change my mind around having it before in 2018 when I joined the renal unit in Brighton I would never had made the decision to have a fistula put in I was strictly against it. I’m glad I made the change and soon once my central line is out I’ll enjoy swimming showering without worry of getting the line infected and much more.

Ps. Lidocaine and numbing cream is for pu**ys mind over matter

03/09/2024

Hello followers new and old.
It’s been a while….
2 amazing years this year would’ve been my 3rd unfortunately due to covid and pneumonia my anti bodies attacked my Transplanted kidney and I’m back to my favourite room at my favourite unit with my most favourite nurses.

It’s been an emotional ride but nether the less we start again this time with new faces and a brand new fistula which has been the biggest turn around as I said I’d never get one!.

Here’s to Ellie-Mai’s A kidney journey back to the start.

06/05/2022

So here’s a appreciation post to my donor!
Someone lost their life to give me back mine.

1 whole year this time was the chance I was given to start over.

So what’s it like for a transplant paitent from the start to now?
The process is long and there are faults that aren’t yours, that can cause set backs.
But I tell you now them setbacks make this whole process worth it.
With reacurring UTIs that are under control by proferlatic antibiotics and a long time sorting out doses of different medication I can say I’m happy with this kidney.

My kidney was donated to me by a 30 year old female who sadly passed on the 06/05/2021. And my thoughts go out to the family of the donor and how thankful i am for the better quality of life.

But then it’s not all rainbows and sunshine there will be ups and downs the “yo-yo” effect as it can be going so well and suddenly you back at being admitted into hospital, really like you can’t move, feeling like when will I stop being poorly comes to mind but then your body bounces back and your stronger then ever. When you have a transplant your body has to adjust to a foreign object, and your sensitive to bacteria and infections.

As a shock to the system earlier this year I didn’t only have a UTI - (urinary tract infection) that slowly travelled into my kidney causing a kidney infection. I then caught Covid l and was the Covid ward. My initial thought was panic.
What will this do to my kidney? Thankfully had no effect on my kidney whatsoever and with this kidney infection/ uti the lab were able to grow the infection from blood cultures and pick the correct medication to put me on to fight the UTI/ Kidney infection plus having a IV drip to hydrate me with fluid and also antibiotics. After 7 days in the Covid ward I was finally back on the mend and my panic was over as my creatine was perfect and so was my tac just of course due to Covid being and infection my infection markers were high and PCR test came back as positive.

But even with all that being said. Last July I got the opportunity to start living my life I got myself a job as a bartender and then a cleaner last September and now due to my health being on the up this start of this summer I now do both.
With the mindset of never tell yourself something Impossible. You can make it possible if you believe in yourself you can do it you can. I’m a strong believer with if you want it bad enough sooner of later you’ll get where you want to be.

So here’s to a year, here’s to my donor and my donors family who made the decision for their daughter to save multiple lives including my own. Here’s to my dad for supporting me. To everyone who believed in me or sent their love and wishes. And to all the lovely wonderful people along the way.

Thank you to all my dialysis nurses and thank you to all the Guys and St. Thomas’s surgeons and staff. It’s amazing to know all these people who work their arses off to make sure we are all a picture of health.

Happy 1 Year to my KIDNEYYYYY!!!!!

22/07/2021

Just a goodnight message from me saying…

Things are going good because we are growing up. The things that used to bother us no longer do; the things that didn’t bother us before now does. Your moving on, growing, being the better you the deserved life you want and it may be boring but patience is a virtue. And only you can make that happen.
- Ellie-Mai Young

22/07/2021

New kidney , New job , the start of a journey!
Never give up on what you want!
So your looking at the new bar maid of a nightclub in Brighton !!!

12/07/2021

So I’m back at Brighton hospital now for good no more travelling to and from London. My levels are perfectly fine I’m healthy too just been advised to eat more phosphorus foods like dairy and protein which is most of what I eat anyways just gotta eat more of it. So chocolate and cheese for me 😂 hope everyone is well ❤️
Ellie ❤️

27/05/2021

Update !!
Transplant Clinic today - in and out within 30 mins love it, weight is 63kg which is amazing as that was my dialysis dry weight. My blood pressure has improved with being the best it ever has coming in at 118/76. I haven’t got my kidney results back yet but they said if they have to make any changes or any concerns they will call. Still waiting on news about when my stent and central line is coming out but apart from that everything is working perfectly!!!
Peace and love.
Ellie x

23/05/2021

Hi everybody this isn’t an update and I know it a little bit late but this is just a post to look back on how far I’ve come.
So here goes…

This day at 12:27 in 2018 i went from being a transplant patient to a Heamo Dialysis patient, it was a bit of a shock to the system. I knew this day would come it was just a moment of when, i was notified a few days previous that it was going to happen but on the 23rd of May 2018 i had the operation for the central line to be put in.

Me being me i preferred to be knocked out fully with general anaesthetic , they did offer a quick 30 mins in the treatment room but i started hyperventilating of the thought my life is over I’ve lost my transplant! I just wanted someone that couldn’t be there. And i hadn’t told anyone in my family due to embarrassment and disappointment in myself, but thankfully there was a lady opposite me that calmed me down and reassured me everything will be okay.

The reason i lost my kidney transplant was due to a lot of reasons not all my fault but there is fault my behalf that is there. Now its taken me a while to own it and also say it out loud. So i had many UTIs from around about a few months after the operation that lead to hospital visits and admissions. This caused a lot of scaring. then a few years passed… i went through a dark stage in my personal life that didnt help when there was a meds box full of medication that i just had enough of taking. i wanted control back in my life. then i got better at taking them again but due to the antibiotics from more UTIs i got E-coli, hospitalised and self isolation from anyone for 3 months. this didn’t help the kidney… things got worse in my personal life and i stopped going to hospital for check ups i didn’t even bother with the medication and i just gave up. Until it became painful so painful my kidney started to really hurt, i had a UTI but i was also in End Stage Renal FAILURE. And to own my mistakes i kept it from everyone and thought I’m gunna do this by myself, i put myself here now I’m gunna deal with it.

Until i saw that big bloody tube hanging out my chest, attached to a big arse machine ; I thought maybe i should tell my dad, i can’t hide this! So i did and i expected anger, disappointment, probably waiting to be called a F’ing idiot, i got none of that my dad look at me as i had tears in my eyes and he said we will get through this but you know this isn’t fully your fault. I want you to move back in with me so i can look after you. So once allowed home thats where i went back to my dad to be looked after because even at 18 the government may say your an adult but you still need your dad.

I was a pain in the arse when i first started out on Dialysis, yes i was that annoying stubborn rude patient that you literally want to punch for talking to the nurses like s**t! and now looking back at that version of myself id like to apologise to any nurse, i was scared it wasn’t anything against you. In-fact all the dialysis nurses had massive effect on the way I saw life as a young person on dialysis. their a family to me and hats off to all the underpaid overworked nurses that get s**t from patients, cause they will still look after you just strategise their way around you so there still doing their job and you’d be close to satisfied.

Now after 2 years and 4 months and a few travels to GUYS Hospital with Transplant turn downs I’ve finally been given this magic gift of life. All my levels are perfect and everyone is happy. including myself I’m now in a happier place then i once was, and if you know me personally you’d know what I’m talking about.

Anyways Peace and Love everyone!
Ellie x

20/05/2021

20/05/2021

In 2011 I was invited by the rays of sunshine to go switch on the Marylebone Christmas light with my friend Hannah, and guest star/public figure Lisa Snowdon. I posted on my Ellie’s Kidney journey Instagram the picture from that night and OMG .... Lisa Snowdon liked it. 🤗😂

17/05/2021

So today I had my 2nd transplant clinic appointment at guys hospital and to say it went brilliantly I’d be lying it felt very rushed but delayed all at the same time, we was there an hour before taking my weight and blood pressure and bloods which usually isn’t the case they usually get that out the way you wait an hour then be seen by the transplant nurse.

So after an hour my blood pressure did get taken and surprisingly for the first time in forever, it was lower then expected that number being 110/71 which most people if you knew me you’d be shocked and ask me am I feeling ok ? Yes I feel fine but that was just today’s it changes believe me.

Then there was a pause and the transplant nurse came in and introduced herself (as there are 4 different nurses running the transplant clinic at guys) andddd she may have introduced herself but honestly I cannot remember her name. She realised my bloods hadn’t been taken so she couldn’t go through my results so she just left the room as the blood nurse knocked and then she said she’d come back later. Soo yes more waiting around.

Once the transplant nurse returned I still didn’t have my results back so there wasn’t anything to talk about apart from my urine which was up from 1 to 2 on my infection markers, which could indicate that I could have a possible UTI - urinary tract infection. I haven’t got the simple signs of painful when passing urine, I’ve been drinking plenty and well I definitely haven’t been having s*x. Sorry for people who have known me since I was a baby but yes I’m grown now it’s okay to say and have s*x I’m just not having any. They have however sent off my urine to a lab to get further tests as I did suffer quite bad with UTIs on my last transplant which cause a lot of scarring. With that she went on to say have I’ve been measuring my urine I said no I thought it was a 24 hr thing no one told me otherwise.... she then laughed and said noooo measure your putting in and out so back to my famous urine measure, my dad he loves knowing how much I p*e.

She then went on to be quite patronising like I don’t know the seriousness of my illness or like I was new, by telling me about am I sure I’m isolating and that I will be for the next 3 months I replied yeah I understand especially with this new variant of the Indian virus and I’m more then aware. I’m not stupid. I take my hats off to the fact there’s nurses still out there today right now every second trying to save lives of the variant that most of us have been vaccinated against. She then went on about taking my meds setting reminders well love let me tell you yeah I have a strategy that is working for me. As she slides in with you know you have to keep them 12 hrs apart the morning and nighttime meds right, then I had a little thought the time they want me to take is 10pm and 8am which isn’t 12hrs. Where me I take my meds at 10am and 10pm and In-between my lunch at 2pm and dinner at 6pm. So take that! Nah I’m joking I know they do and know what’s best it’s just... give me some credit please.

I still have my central line in my chest which is in motion to be taken out along with the stent that is in my bladder but that’s also a waiting process of when they can get me on the ward. But the dressing needed changing so they changed it and flushed it with Citro-lock the one everyone called the tasty one but it’s not so much a taste yet a tingle of numbness around your tongue and lips.

After all of that it was straight in the car home, and then once I got home I was so tired I crawled into bed turnt over and went to sleep.
Hope everyone had a lovely day.
Onwards and upwards.
Ellie ✌🏼

17/05/2021

Second clinic appointment waiting to be seen ....🤞🏼