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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Transplant UPDATE! (Includes Graphic Pictures) Day 1 – Day 9 (Tuesday 12th April – Wednesday 19th April 2016)

Hey Everyone!

So on the 11th of April my parents and I travelled to Addenbrookes Hospital in Cambridge for me to be admitted to hospital ready for our major operation on the 12th.

On day of arrival, I was admitted to bed number 20 straight away where I had a number of tests taken to make sure I was well enough for the next day. I was allowed to leave hospital bed and go down for food with my parents and didn’t have to be back for a couple of hours when we had to talk to surgeons and doctors about our procedures. Mum had her blood thinning injection. I spoke to my surgeon and mum spoke to her surgeon so they could tell us what will be happening. We were told that mum would be taken down to theater at 8.30am and I will go down when Mum’s op was half way through.

Bloods shew my potassium was too high for operation and I was told that I may need to have a line in my neck early for some hemodialysis and to make sure I do all my dialysis exchanges and hopefully that would take the potassium down. I was later told that Potassium was low enough for surgery.

 

Day 1 – The operation (Tuesday 12th)

Mum was admitted to hospital about 7am and they shew mum to a side room on her own and she was asked to change into a gown. Doctors and anaesthetists spoke to Mum. Mum got on the bed and drew on mums stomach, 3 lines and put her stockings on. Mum was given a gel enemena. She had a cannula put in and then was wheeled down by wheelchair around 8.30am, dad went with her until they reached the operation theatre, with an emotional farewell. She got on the warmed operation table and was told to take her gown off and how she would be situated during surgery, this was crucial due to comfort and protective of her joints.

At around 9am I was told by my surgeon that mum was now under anaesthetic and being placed on the operating table. At 10.30am I was taken down to theatre, dad followed and he was emotional. I went into theatre and was told mum was just next door and doing very well. I was relaxed by a woman who was lovely and the team was fantastic. I told the team that I hope they bought their wellies as I can’t always drain properly and I didn’t want to be a water feature in the middle of surgery lol. The team laughed at me and reassured me that it wasn’t a problem. I was then put on oxygen and then they put in the anaesthetic and slowly started to feel drunk and I remember telling them I felt like had drunk lots of cocktails and all I remember is them smiling and asking where I would like to go on holiday. Then bam I was out.

Mum was taken back to intensive care around 4 hours after until she had woke up and was put back on the ward around 4pm when mum could have dad visit her.

I was in intensive care until 9pm when I was put back on the ward.

We were both pretty out of it so can’t really remember much on this day at all.

Day 2 (Wednesday 13th)

This was the day we came to realization of having pipes. Mum was catheterized. I was catheterized, had a line in my neck and a drain in my left side but had a morphine button for whenever I felt pain. Which was great. We was very much in and out of sleep. I didn’t eat anything as my appetite was non existent. Mum was wheeled to me by dad and I saw her first time, that was rather emotional but such a relief to see her. The surgery went very well on both my mum and I and my kidney woke up straight away. I was on oxygen all of the night and day because the pain killers made my oxygen low. I was very sore and kept drifting in and out of sleep. I did update some people by text but mostly by Facebook but it was so hard to type as I couldn’t see straight.

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Day 3 (Thursday 14th)

Mum had her catheter removed.  I was on oxygen through the night again and it made my throat incredibly dry and sore so I was drinking water quite a bit. Both of our oxygen was low and mum was getting a lot of gas pain under her ribs so she was put on a paracetamol drop so we were feeling worse for wear and quite a bit sore, I was told that I can try to get out of bed today and see mum. A male physio helped me to walk to mums bedside but I didn’t stay for long because I started feeling light headed, I then got wheeled back and threw up. I was on oxygen throughout the day and morphine, I had to have a blood infusion because my hemoglobin was low, mum was told the news that she should be getting discharged the next day all going well and had her cannula removed.

Day 4 (Friday 15th)

Mum was discharged in the afternoon. I had my cannula removed which meant no more morphine. The pain I struggled with and my catheter was annoying me and my drain was very sore and neck cannula was pulling. And my vision was still very blurred. Catheter got incredibly painful and I had my time of the month so I was in floods of tears and I just wanted it out. I was told that they wanted me to keep it in until Monday but it had got me in a mess and my sats went through the roof. Eventually the decision was made that my catheter would be coming out because it had been moved around twice and still no difference, I was told to go to the loo every hour on the hour through the night as I had a plastic stent on my new kidney and bladder and I had to be careful not to break it.

Day 5 (Saturday 16th)

My night was horrendous as I had no sleep due to having to wee every hour on the hour. In the morning Dad and mum visited me then went to their accommodation to settle in. I thought I would have a nap and who should appear by my beautiful partner Hannah! She stayed by my side from 2.30am until 9.30pm. We watched britains got talent together on my tv. Was so nice to see my girl. Mum and dad came to see us in the evening and then went back early because mum didn’t feel too good.

I had my neck line removed.

 

 

Day 6 (Sunday 17th)

I felt like rubbish and had sickness and was in complete agony. I kept crying because I was in pain and home sick and I just had enough. The drain was now causing me a lot of pain but was still draining too much fluid so wasn’t allowed to be removed for 24 hours and I was told I wouldn’t be discharged until middle to end of the week. I was devastated. I was told mum wasn’t allowed on the ward to visit me because she had caught a sickness bug and so I didn’t see mum for a few days which we awful especially when I knew she was unwell.

The pain for me was pretty horrendous. Everything cough, sneeze, movement was excruciating and trying to get comfortable was impossible. Stronger drugs made me sick. The drain was causing me so much pain. Being sick hurt like hell. I was still devestated and crushed that I couldn’t go home and I was an emotional wreck yet again.

In the evening dad came to visit me and we ended up watching Peter Pan on the TV which was VERY expensive £17.50 for 2 days for 25 channels and movies. But mid film it cut out so dad went and when the systems came back on we resumed to watch it, was a really good film.

I found out I had lost a whole stone in weight since my admission to hospital.

Leo from ICU looked after me and dried my hair and changed my dressings and reasured me, she was an angel.

Day 7 (Monday 18th)

The drain pain was agonising the worst ever and I was crying through the night and early hours and I was just wanting the stupid thing out as it was hurting so much.

Doctors found me in a state and it was decided that the best thing was to take the drain out. We were also told that mum and dad could no longer visit me due to mums bug. But I received some news which was very unexpected that I might be able to go home! As long as everything goes well with the removal of the drain and I have an enemena to make me go and if I went I could go home.

Mum and Dad went home back to Norwich as mum was so very poorly and needed to be home.

A female physician walked me around the ward and told me I am doing amazing and she felt sorry for the pain I had been through and said I was very brave. I told her my whole life story in that walk. When she left I done another 3 on my own round the ward, when I had finished I tried for the loo but failed miserably and instead had just wore myself out.

So I had my drain removed. Now I must admit it wasn’t pain free but it wasn’t excruciating. It was a little ouch and cringe and weird sensation. I mean the tube was 18 inches inside me through my stomach muscle and skin so when it came out I felt every layer and the nurse told me to breathe in and when I breathe out she would pull it and so I had to do that around 6 times. I can’t say it was painless because it really wasn’t but it was bearable.

Then I had my enemena and eventually went, can’t say that was an easy process but it kind of happened.

My cretanine was at 112 which was brilliant, going from kidney failure to having cretanine like that is amazing.

I was then told I could go home so I rang dad and he made his way back to Cambridge. I got my discharge letter and all my drugs within the hour had my medication given to me and was helped off the ward and got wheeled to the car.

The journey home was horrendous and I found it incredibly hard to breathe. I got home and went straight upstairs to loo. I was in a rubbish place.

I had horrendous constipation and resorted to taking my harsh laxative.

 

Day 8 (Tuesday 19th)

I couldn’t sleep and at 4am tried to sleep downstairs but failed miserably and took myself back up to bed but went back downstairs at 6am. Just couldn’t sleep. Mum came down at 630am.

I had really bad constipation so we rang the GP and I was prescribed some Lactaluse.

The laxitive I originally took finally worked but was told it was too harsh on me whilst in the state I am.

We had soup this day.

And relaxed throughout.

Day 9 (Wednesday 20th)

Today I woke up early but slept better. Drain pain is still bad and looked manky so I cleaned it and replaced the bag.

I took all my medication but only have eaten a digestive biscuit so far.

I helped hang out the washing this morning.

My plan is to eat some more potato and leak soup. And rest.

The medication I am on now is:

Tacrolimus 12mg (Anti-Rejection)
Mycophenolate Mofetil 500mg (Ant-Rejection) x2 a day.
Co-Trimoxazole 480mg (To prevent infection) on Mon, Wed, Fri.                               Valganciclovir 450mg (To prevent recurrence of CMV infection) x2 in morn.
Aspirin 75mg (Prevent blood clots).
Alfacalcidol 250 nanograms (Vitamin D Supplement).                                                       Ceterizine 10mg (Antihistamine, prevent itching).                                                                 Lansoprazole 30mg (Prevent or treat stomach ulcers) x2 a day
Nystatin 1ml (Mouth wash, prevent fungal infection in the mouth) 4x a day
Paracetamol 500mg (Pain relief) 8x a day
Meptazinol 200mg (Pain relief) 4x a day.
Clonazepam 500mg (Treat restless legs)
Ondanestron 8mg (Antisickness) x3 a day.

I will update more later on…

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Dad bought me and mum the same bouquet of flowers each, aww.

 

 

Some of Mums Picture’s:

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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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