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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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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Addenbrookes tomorrow, my feelings and my journey so far – Sunday 10th April 2016

Hey Everyone,

So tomorrow is the day that I am admitted to Addenbrookes hospital and I am petrified. Mum is also pretty scared about everything and we both just want it to hurry up and be over with so we can go home and recover. So operation is on Tuesday and all going well mum should be discharged within 4-5 days whereas I’ll be discharged in around 6-7 which is a long time to be in a hospital bed.

At the minute I’m not feeling very positive about stuff because it is pretty daunting. This is only the second time in my whole life I’ve had a proper operation and it is the most major and that alone scares me not forgetting that it’s not just me but my beloved mother too which is even worse when you know your loved one is under the knife. 

My dad has both his girls under the knife so he’s going to be twiddling his thumbs just hoping to hear the good news that everything went well and we are in recovery. 

Our operation is Tuesday morning. My Mum has her op at around 8am and will be in theatre for around 4 hours then it’s my turn, argh. I just hope they can tell me mum is okay before I get sent in because as soon as I know she’s okay I know I’ll be able to relax a little more and be less anxious. 

I was diagnosed over a year ago, my kidneys failed a year ago on May and in June it would of been a year since PD. I have learnt so much and the main thing is learning how strong I actually am and you really do have to be. There is no use me crying about something I can’t change but allow changes to happen to make me have a somewhat normal life. I know it’s not going to be easy, I’ve never expected to. I’ve been through some hard stuff in my life and it’s only taught me that I am strong and that with the right mind and positive soul anyone can get through some dark times. It’s hard, there’s wobbles of course. I am only human but more often than not I just get on with life, it’s the best way.

Your support means so much to me and I have been overwhelmed with the messages I’ve received, and once again you find out who your true friends are… I mean I am going for life changing surgery and so is mum and some people haven’t even bothered to wish us luck, it’s sad but always happens when you go through shit.

Anyway I am practically falling asleep writing this and I’ve got to do packing in the morning sooooo I will leave it there and hopefully blog within the next few days.