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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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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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 🙂

 

 

 

What is new in my world? -Friday 18th December 2015

Hey Everyone,
I haven’t blogged in a while as a lot has been goin on in my life at the minute mostly to do with the transplantation.
So as I stated in my previous blog that my family and I took a trip to Cambridge to visit the surgeons, doctors, coordinators and have more tests. My mum had to do a fitness test and have other tests as well as we both had to have blood tests.
We have had the okay 🙂

So after being told the risks and being petrified about risking my Mum’s life I was told that being put on the Deceased Donor List would maximize my chances of getting a transplant quicker. So on Monday I was called by Cambridge to be told they had received my forms and I was now live on the Donor list.
I gave my mobile number, my mums mobile number, my dads mobile number and our home number and will get a confirmation letter through the post but we will probably add dads work on there too as the more contact details the better.
I am awful at putting my phone on loud so having it on loud and remembering to keep it on loud is somewhat a challenge.
I now can get called any day, any time and that is bloody scary.

Today Mum had a call from our transplant coordinator in Cambridge and was told that they can now give us a date…12th April 2016, ahhh! So if by Easter a Deceased Donor doesn’t come then about 3 weeks before that date I will be taken off the Donor list and my Mum will be going ahead with the op and donating me one of hers.

I have so many mixed emotions and this blog wouldn’t be complete with me rambling, so here goes.
So my first main concern is my Mother, she is my hero, my best friend and I am petrified that something may go wrong and I may lose her, now I know the percentage is tiny but you worry about these things especially about someone that you love so much. I can’t even imagine life without Mum in it. I feel so sorry for people who have lost their Mother’s especially at a young age.
The other is that if a deceased donor comes forward than its pretty devastating that a family is going through heartache of their lost one yet I am gaining life. I mean I know people are on donor lists for reasons and they would love to give someone else life but you just can’t help but feel upset that, that person died.
The next is that I have been so unwell for so long now you start thinking that you’ll always feel this way. I genuinely can’t remember the last time I felt ‘normal’.
And the operation scares me, the whole idea of it all and how long I will be in hospital. My Mum has requested for a Hospital Hostel because she refuses to leave me their on my own. As a person who suffers with anxiety which has got worse since being ill I would be so scared to be left all alone. I am not really fond of the idea of having a urinal catheter placed in my privates, I have never had a catheter in that area so it scares me lol.

I mean I genuinely am forever grateful for the generosity of my Mum and for those on the donor lists as this really is important. But as a human you do have feelings. Worry is a massive emotion as well as sympathy for those who have lost their lives.

This is the beginning of a very long journey and perhaps after transplant I will be able to resume living again, for however long that is.

This is a very long journey and one that I have no clue how its going to go other than bumpy lol.

It has been a hell of a roller-coaster for me but it has made me open my eye wider, look at world different, look at life different. It has made me wiser, and it has made me a stronger person. I get down, I get really down but I can get back up again because at the end of the day life is too short, and what is the point on dwelling on something that is with me for life? I don’t want to be permanently low and feeling sorry for myself because that will be wasting precious time.
The sad thing is that life is far from easy but to be honest life never really has been easy but it just got a hell of a lot harder but I consider it a learning curve. You look at things more closely. You look at how precious life is as you are so desperately clinging to yours.

I want to say a massive thank you to all of you who have shown me all the love and support, I am so overwhelmed by so many lovely people who have done nothing but support me throughout my journey and continue to do so. Those of my nearest and dearest who have been there for me 100% I love you so very much and you all mean so much to me.
I have lost and gained friends, the ones I lost don’t matter and the ones I have gained, I couldn’t wish for better.

I hope you all continue to follow my journey 🙂