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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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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