Stent removal and health update – Tuesday 14th June 2016

Hey Everyone,

It’s been a while since I last done an update so I thought as I had my stent removed yesterday I would do an update today.

The ureter came with the donor kidney and was connected to the bladder with a small incision. A stent is a thin, hollow tube which is place inside the ureter to keep it open and allow connection to the bladder to heal. The urethral stent needs to stay in place for about six weeks after transplant.

It is now 9 weeks (2 months and 1 day) since my transplant and yesterday I had my stent removed.

Before the surgery I did want reassurance and seeked it from many CKD groups however most said it was uncomfortable but not painful and others said it was really painful so I still was unsure what to expect. I was really nervous but knew it had to come out otherwise it would cause all kinds of problems plus I felt restricted when I did go to the loo because of the stent.

So operation day came which was yesterday 13th June and I was told to get into a hospital gown. I was then wheeled down to theatre where I actually had my transplant which was weird.

Anyway it wasn’t very dignified and it took them a while to get the tube in because my uretha is abnormal lol (only me) and after a while of trying to get it in and putting a liquid kind of general anaesthetic in the area I still felt everything. Now I must admit it was actually pretty awful for me and stung like hell. Although the pain wasn’t enough to make me cry it was enough to make my eyes water and I made some funny noises lol. It felt like I was having injections inside to be honest so yeah not a pleasant experience although the surgeons were amazing and it was the same surgeon who carried out my transplant and she’s amazing and lovely and made me feel at ease. I mean she even put on some 80s music beforehand lol as she knows what I’m like 😂

After a while, and to me it did feel a while and several attempts of trying to get hold of the stent because it also was in an awkward place it was out!

It was a long thing thing that looked like a tape worm to be honest. I was like woah that was in me! Lol!

After going to the loo stung and burnt like a if I had a bad UTI (Urine Tract Infection) but before the procedure I had an antibiotic to avoid any UTIs.

It did bleed and today it’s still uncomfortable to wee although I no longer feel restricted! It is still bleeding today but this is all normal.

Two weeks ago I was told that I could now go to Cambridge every fortnight and so I’ve got my appointment this Thursday and so far everything is going well.

I went clubbing with my friends on Saturday and had only a few drinks and I was happy and spent my night dancing and laughing!

My life is now slowly coming back together and I’ve made so many plans to be excited for. Yay!

Thank you for reading! Xxxx

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A rant, how stupid and uneducated people are! – Monday 23rd May 2016

Hey Everyone,

I haven’t blogged a rant in ages but a comment today has bought up several that I’ve heard throughout my journey with CKD and Kidney Failure.

I did actually openly write this on my personal Facebook status but I have a large audience on my blog so thought I would also share with you guys as it’s something that is a regular occurance not only in my life but others with silent diseases or disorders too!

So as someone who is very much online with my support groups, social media and blogs I am open to pretty much everything and anything and of course I receive mostly the amazing messages of support and love from people I don’t even know but unfortunately there are a selected few who like to give people shit.

So… I have had random messages over Facebook mainly. Anyway the messages normally consists of… Get a life, you spend far too much time on the Internet, you’re not really ill, you’re faking it, you’re an attention seeker, stop sponging off of the government, get a job…. The list goes on…

I actually feel sorry for how uneducated people can be in this society, it’s actually quite disappointing to see how naive people can be. It’s also very sad that people go out of their way to try and dampen down someone’s day just to make themselves feel good and then 9/10 run on to a group or their online friends and tell everyone how big and clever they are for stating shit they have no clue about. There just seems to be no understanding or even trying to understand a person.

I have never been an attention seeker, you need confidence to crave attention and I lost a lot when I became ill. I selfie on the days when I feel confident but most of the times I’m too damn right tired to even get out of my pyjamas! So you’ll notice I will selfie on the same day.

I became too ill to be independent, that alone knocks you down. Chronic Kidney Disease is actually nicknamed the silent killer, and if you don’t know much about it then I suggest you look it up and do some research before trying to tell me ‘you’re not really ill’

Yes, I have been very fortunate to receive a transplant from my Mother but if educated or you actually asked questions then you would actually know that a transplant doesn’t last forever and there is no cure for CKD! Whatever treatment we are receiving whether it’s dialysis or transplant we will NEVER feel ‘normal’.

Being told to stop sponging off of the government is another one that really grinds my gears. I have worked every day of my life since I was 16 years old right up to when I was 25 almost 26 in January 2015 because I became too unwell to work, I got signed off and declared unfit for work by my GP and was diagnosed with IgA Nephropathy CKD stage 4 which is in fact one stage away from kidney failure which within a few months of diagnosis I was rushed to hospital to have emergency dialysis otherwise I wouldn’t be here!

You never realise how important your kidneys are until they aren’t working properly or they fail on you. It kills people on a daily basis! I’ve looked death right in the eyes twice!

I got completely signed off of work and fought to get personal independence 4 times and there is ALOT of tests it entails so believe me it’s not something you can fake!

I actually can’t wait to resume my life and start earning my money in a good job. That to me sounds amazing!

So I am sorry if I have had a year off of work because I have had to concentrate on more important things like keeping myself alive!

I spend a lot of time on the Internet, yes. And what? It keeps me sane and your comments just make me even more stronger so continue! Eventually you’ll get bored. I have loads of successful support groups, my blog, as well as using it for social media and being an agony aunt to help and advise others!

I NEVER say poor me because everyone has their own shit to deal with and this is just mine, I can’t change it so there is no point in crying over it! You just got to get on with it and try your best to remain positive which I do a damn good job in doing despite your stupid idiotic comments and what I deal with!

I am sick of seeing comments of stupidity that people receive who are in the same or similar position to me, the compassion and understanding is running low and it disgusts me that people are too judgemental and ride and so very wrong.

If you are one of those people who want to judge me then be my guest and get out of my life because your drama and stupidity is not needed in this life of mine!

I am all for answering questions of those who are curious and want to know more about things or understand. But don’t accuse me of stuff that you’re so clueless about, it actually makes you look a twat!

Hope everyone is having a good Monday, and I shall be back soon xxxx

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Health update – Monday 23rd May 2016

Hey Everyone,

This is a brief update on what’s going on after the complications I’ve had.

I’ve now gone down to once a week because my cretanine keeps dropping, yay!

I started by nebulisa the other day which to be honest is awful, it made me cough loads but at the end of the day it’s keep infection away so it’s worth 20 mins of discomfort!

I have got my stent removal date for 13th June which I am apprehensive about but it’s got to be done.

I am still pretty tired but energy levels have improved.

I woke up the other day with my foot in agony, and have to let them know Thursday to rule out blood clots (deep vein thrombosis) hopefully I’ve just mysteriously hurt it some how.

Anyway that’s all I have to say on that matter but will update you again soon xxx


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UPDATE: Health update after today’s appointment – Thursday 12th May 2016

Hey Everyone,

Today I had my usual appointment at Cambridge. So after the recent results I was hoping to have some good news plus today was meant to be the day I find out if I can go down to once a week instead of twice a week.

So my blood pressure was round about 125/82 and it’s been kind of high but not worrying high and I’ve put on a bit of weight but I think that’s genuinely down to me eating my lunch early before weigh in lol.

Today I had a meeting with the dietician and got told more things in depth and that I am doing everything well and that she shouldn’t need to see me again in clinic unless my blood results change.

So next was my doctors appointment and I was told the best news yet that creatnine had gone from 15p to 143 to an amazing 127 which is amazing! But I am to be seen on Monday and then apparently then I find out if I go once a week.

I have a horrendous rash which was down to one of my anti infections so I’ve got to go on enebulisa once a month which is less harsh as this one I had been on I am allergic too. First medication I’ve ever been allergic too lol!

So today was some good news which I’m very happy with and it reassures me that hopefully things are finally going in the right directions. Looks like the kidney biopsy woke my kidney up a bit lol!

I’ve just been told to build on drinking more especially during summer, so that’s a target alone lol.

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UPDATE: Latest information 4 weeks post transplant – Tuesday 10th May 2016

Hey Everyone,

Yesterday I had my appointment at Cambridge, this is my first appointment since having a kidney biopsy.

I got to see one of the top doctors who actually saw me whilst I was in  hospital and I hadn’t seen him since so it was good to have my appointment with him.

So I have a horrendous rash which is down my inside arms, arm pits, on my belly, boobs, sides, legs, and bum. It’s a rash that originally got put down to my strong pain killer Meptazinal but after coming off of it the rash remained and it wasn’t until I saw this doctor that he said he was almost certain it was one of my anti infection drugs so I’ve been taken off of it and I have to go on a nebuliser with the same kind of thing monthly the down side is that it can bring on my Astma worse but I have inhalers for all of that and I’ll be prescribed with a new blue inhaler anyway so that’s in the process of being sorted. This is to keep me from getting infection.

The biopsy results shew on the system that the transplanted kidney was normal and everything was fine there, the system was updated with my now 8mg of anti rejection Tacromilus as I am not on any steroids.

I also got taken off of my anti sickness ondastreon and my blood thinner aspirins.

All is going in the right direction and my last lot of bloods shew cretanine had dropped from 150 to 143 and my blood pressure is a little on the hide side but both things that the doctors will keep an eye on but aren’t so concerned at the minute. I said I’m a little obsessed with my blood pressure and what it should be because I had to take it every day when I was on Peritoneal Dialysis.

The good news was that if my bloods come back okay then after my appointment on Thursday I will be put down to once a week rather than twice a week which is very good news.

I’ve been wearing factor 50 for the hot couple of days we have had so no burning for me. Unfortunately I can’t be a sun baby no more so the only way I am going to get a tan is if I fake it lol which thanks to my rash I can’t do at the minute. I suppose I’m lucky that I’m not really pale lol and I do have colour to me naturally so I don’t look like a ghost lol.

How do I feel?

Well it’s been 4 weeks since my transplant and I am personally feeling quite good. I’m tired but not chronically fatigued and although sore, pain is quite low now. It’s more like bruising so paracetamol actually takes the edge off now when before my meptazinal and paracetamol barely touched me. I have put on weight but I seem to have an appetite now which I haven’t had for a long time and not only that I’m unable to exercise as of yet so as soon as I can I will be working hard to shed some weight in a healthy kidney kind way. I am struggling with fluid intake and I’m meant to be drinking at least 2 litres a day so I have purchased a 2.2 lite bottle which I really need to start getting used to drinking loads but being someone who never hardly drinks it’s bloody hard work. But that’s something I need to make sure I try harder to do.

I genuinely feel pretty good a lot better than I did a few weeks ago and when I was in kidney failure but I still have a long way to go.

The kidney biopsy area is healing well and although bruised and a little sore it’s okay. I think within 2 weeks I’ll be off pain killers all together, going well.

Medication in general is getting smaller and smaller which is good. So I was taking 30 medication when I was discharged and now I’m down to 23 I think which is good!

How does mum feel? (Live donor)

My mother is unfortunately suffering with sciatica so she’s not in a good way and has been dosed on high pain killers and medication to help her sleep at night. She’s been to our local GP twice but unfortunately they can’t tell her anything as of yet, but has been told it should go off on its own but mum will be looking into further treatment if it doesn’t go but at the minute can’t as she’s only just had surgery 4 weeks ago, so she’s just laying down a lot and not very mobile but she will be okay, it just takes time.

Anyway that’s all for now folks and like I always say thank you to everyone who continue to support me through my rollercoaster of a journey. Your love and support means the world to me, so thank you!

Take care for now!

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The outcome after a set back – Saturday 7th May 2016 

Hey Everyone,

So the last couple of blogs I published were full of bad news so here I am telling you what happened at my clinic appointment and what the final results were.

Okay so my dad took me to the hospital for my clinic appointment and scan of my kidney, he decided to take me because I might be kept in because we received the devestating news that my kidney wasn’t working very well and my creatnine was rising.

It all depended on my results of my bloods. So the bloods from the Monday were showing that the creatnine had gone down so he said if it continues to go down then we will be sending you home but if it’s gone up we will be keeping you in for a kidney biopsy. I was so nervous of the outcome. So I went down for my scan where they told me the kidney looked beautiful and seemed to be running very well so no problems there but hours later and I mean hours later we found out my creatnine had gone from 143 to 150 so I was told I had to be admitted and would need a biopsy that evening or the following morning.

I was admitted to a hospital bed on a different ward and there I stayed. Dad stayed with me for a bit because I always get anxious on my own, suffering with anxiety is a nightmare in its own right. Anyway he had to go obviously to get home, so there I waited and the doctor came round to tell me that the scan showed nothing and that the kidney was working well and the only way they would tell what was going on was to have a kidney biopsy on my transplanted kidney. I mean I’ve had two before on my kidney I was born with and I kind of knew what to expect.

So I was told that the next day around 8am I will be having a biopsy done, and the outcome could be infection, rejection or tweaking medication and I was so confused because other than feeling a bit in pain from surgery I felt quite good so was desperately wondering why my kidney was playing up and I genuinely thought here we go again more bad news…

Anyway that night I slept okay considering I hate hospitals and hospital beds, I always think they make you feel far more worse because they are so uncomfortable. I was put on self medication so I could take my own meds at my own times which was good, didn’t have to rely on anyone. At around 8am I had my kidney biopsy and straight after I had to lay flat for 6 hours which was really uncomfortable but I kind of knew what to expect because I had 2 before. The kidney biopsy didn’t really hurt but they do go through your stomach on a transplanted kidney which is a weird sensation and felt like my pelvis was being hit from the inside, which was very strange. It wasn’t a nice experience but it wasn’t unbareable.

I waited what seemed like hours, I was able to get out of bed at 2:15 and go to the toilet without a bed pan which was nice.

I waited until around 6ish until the doctor arrived to tell me the news. Before that I was genuinely thinking the worse because I haven’t had much luck or good news for years now, the best www having a transplant but knowing that it might be failing broke my heart. Anyway the doctor came towards me and my pulse must of gone so fast thinking the worse but told me that the kidney scan shew a lovely kidney, the biopsy also shew no infection and no rejection. So he said its your anti rejections are too high, so they were reduced from 10mg to 8mg and then I got discharged and my dad came to collect me. I couldn’t wait to get back home!

I’m so lucky for once I received some good news and all was going well, the best news to hear.

Thank you for everyone’s continuous support! It means the world to me and my family, thank you xxxx

The first picture shows where I had my kidney biopsy and the second shows how quickly all my scars are healing! Yay!

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Feelings and truth – Tuesday 3rd May 2016

Hey Everyone,

You may of already read my previous post with the dreaded news that my transplanted kidney isn’t working as well as it should be and so I need to go in for a kidney biopsy and scan to see what’s going on. Now the news took me and my close ones by shock and a lot of tears have been shed but the thing is they did warn me that in the early stages trying to balance out your body isn’t easy and it isn’t always a smooth ride. I have done some research and it seems common in the first 6 weeks and sometimes it’s as little as tweaking medication or it could be worse which I’m trying not to think about at the minute. This is shit news and just shows that having Chronic Kidney Disease is pretty much a rollercoaster and never smooth sailing, I think almost everyone has a glitch at some point after transplant but until it’s happened to you, you don’t realise how much it can effect you mentally. I have just now started a new hobby of putting together an aquarium of tropical fish and because the bloody thing has gone milky I have been concentrating on how to make that right. Anyway the thing is we need more awareness about this awful disease and even the after math, the thing is you are never in the clear and you are constantly worrying about your health.

After the initial shock I have done some research and found from forums and amongst my kidney friends that this can be quite common within the first weeks to the first 3 months of transplant. Doctors have also told me it is quite common and I need to try my best to keep my head straight and keep focused and just try and remain hopeful that hopefully they can find out what’s wrong and sort it out to get on the road of recovery. The thing is other than being sore I feel okay, I’m tired and I had a foggy brain which I call med head but other than that my urine output seems to be a lot and things in that way seem to be working. I must admit I’m not a big drinker so I’m going to try and drink more.

Life is literally a very hard journey for some of us and it’s unfortunate but the point is you can’t control what happens with your life. It’s even scarier knowing your life is in someone else’s hands, your life is being prolonged by treatment and medication and without it I simply wouldn’t be here. What I am grateful for is that they’ve picked it up early and not late when it’s got even more advanced and at a place where it’s impossible to save. Doctors say try not to worry but it’s a natural human thing to do and of course I am worried. I am 26 with a life that is on pause and has been for such a long while now and all I want to do is have a somewhat normal life and it seems a million miles away but all I can do is just keep going, keep getting up, brushing myself off and continuing my journey in hope that one day there will be nothing but smiles on this face of mine!

I am grateful for all the wonderful support and messages I’ve received throughout my journey as well as the recent news of my cretanine creeping up.

Fingers crossed and all I ask of you is to keep your fingers crossed and prey for me, whatever your religion, even if you don’t have one just send positive vibes. I need them mor than ever.

Thank you ❤️

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