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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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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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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Update and only 4 days until Addenbrookes, argh! -Thursday 7th April 2016

Hey Everyone,

It is Sabrina here.

First of all I would like to apologize that I have been pretty slack when it comes to blogging as of late.

I guess sometimes I do kind of go into my own little world and forget that others may benefit from hearing about my experiences and that it helps me deal with every day life sometimes.

Recently I have had 3 weeks with my partner for her Easter Holidays and so we spent a week in Norwich at my parents, a week in Yarmoyth with her parents and brother than a week back in Ipswich with just us two which was really nice. We done some pretty cool stuff and went site seeing in a newar by town called Bury St Edmunds.

Unfortunately it was back to normality before too long and my parents and I had to go to Addenbrookes on the 5th to have mine and mums last lot of tests… Blood work, ECG, Chest X-ray and talks with transplant co-ordinator and Doctors and had a lot of mine and the parents questions answered. We literally got up at like 5am left off at 7am and was in the hospital until almost 4pm so we was there for around 7 hours.

Although there was hardly any waiting and things went rather quick.

When arriving home mum was called and told that they had forgot to do a couple more tests so she had to go to Norwich hospital for blood clot tests and blood tests to double check on something that originally did flag up.

We got told today that all is still going ahead with the operation on 12th April and I am being admitted 3pm on the 11th so only 4 days now!

I am scared shitless however I know we are in safe hands and risks are low as well as being reasured by professionals

There literally is so much information to take in lol most of it I’ve already forgotten.

So, I am not really looking forward to being bed ridden, in pain, catheterised, on heamodialysis, my mum being in pain. So basically the after bit. Also for the first 3 months I’ve got to go to Cambridge twice a week which is a pain in the arse because it’s a long arse way plus they said I may not be able to always have someone like mum with me because there maybe not enough room which is a bit rubbish as I have horrendous anxiety and get anxious about everything even having conversation with people I know. I mean you lose a lot of you when you become ill. It knocks you physically and mentally.

I have amazing support from those around me which is lovely and means the world.

I will try and update you all when and where I can but maybe a little delayed given I am going under major surgery.

Thank you, you lovely lot and I will be updating you all soon. Wish me luck!
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Hospital Appointment Health Update – Wesndesday 27th January 2016

Hey Everyone,

Today was my 3 monthly appointment with my Peritoneal Dialysis Appointment.

I had previously done a 24 hour urine sample where you have to awkwardly wee in a jug for 24 hours and also collect 24 hours worth of dialysis bags to see if dialysis is working okay and if I am going for a wee enough as most kidney patients only wee a little and sometimes not at all.

I had bloods taken for several different routine tests as well as some for the transplant team at Addenbrookes, Cambridge.

My first appointment was at 11am and the second one wasn’t until 2.40pm so there was a lot of waiting around in between appointments. Luckily I was with my mum and we were able to get something to eat and have breaks as well as do some quiz books which kept us occupied.

Okay sooooo.
Phosphate is high so I am now on 4 Phosphate Binders a day. One with Breakfast, one with Lunch and two with Tea. My calcium was low so I have now been put on Vitamin D pills. My hemoglobin is good which means my anemia is under control for now although slowly going down it is still at a good place so no iron injections for me yay. Also my Cholestrol has gone down. I have also been told to take my anxiety/restless legs pill earlier as I said it takes ages to work and often find myself up until 3am and then zonked out and often then lay in until 10am.

I have also been told to start working on my fitness as I have put on weight but not only that I have to be the healthiest I can be before my big operation in April otherwise recovery time will take much longer. So as I don’t eat much but don’t move much this is why, therefore he has told me to do a mile walking a day, which is going to be incredibly hard when you have no energy and shattered all the time but he did say have a nap afterwards if need be as it will tire me out but it will be good for me.

The good news is I am also weeing enough, yay!

Last time we went to see my consultant he was concerned that my dialysis wasn’t working properly, but he is no longer concerned as things seem to be okay which is good news. He did ask if I wanted to be put on APD (Automatic Peritoneal Dialysis) which is where I can be hooked up to a machine over night and it does it over the course of 8 hours automatically but as I had the choice I chose to stay with what I knew and he understood.

I now don’t have any more appointments with that consultant unless I need to see someone then he will see me. Then its over to Addenbrookes and after they have finished with me then its at a different team that is my original consultant when I first got diagnosed and the transplant team.

The reason why I am feeling tired and sicky is due to low calcium and also genuinely because I do suffer with the Chronic Kidney Disease symptoms but hey ho life goes on.

So, its time to attempt to get more fitter and lose the weight I have gained over Christmas and hopefully a few more. Me and Mum are going to be eating healthy as of next week and start doing some gentle exercises to get us in better shape ready for April, eeeek!

So until then, that is all I have to share 🙂