Looking back at 2016

Hey Everyone,

It has been a while since I have blogged but as it is now a new year I have took this opportunity to recap on 2016.

I started 2016 with me being on dialysis waiting for a transplant which we had got the date for 12th April 2016, I started it positively but was also petrified for the following months, especially when it got closer and closer to the transplant date.
My transplant was carried out in the April, and I must admit it was the most painful and hard experience of my journey so far. You can never imagine the amount of pain or the emotional strain you go through when going through such a massive operation. It was hard, even harder seeing my mother in pain to give me a second chance of life. I am forever grateful for the gift she has given me and I still count my lucky stars for mum because if it wasn’t for her I wouldn’t be writing this blog now.

The recovery process was painful and long and it really did take a lot out of me and mum. The whole family in fact. The little things like walking, getting out of bed, laying down become massive tasks, and painful ones at that but day by day it got better and better.

The following months were me and mum recovering slowly but we got there.

I had a relationship break up in July, it was hard at the time but eventually you get over it and move on. Time is always the biggest healer.

The following months I started building my social life, going out with old and new friends and trying to rebuild confidence and independence that I had lost through the year of being ill and recovering.

I started seeing my new girlfriend Kayleigh in August. We had known of each other for around 2/3 years, but had only started talking again around May time. We had always had a flirty friendship. Meeting her in August we realised there was something there and our relationship blossomed. We went on some amazing adventures. Colchester Zoo, Clacton, Thorpe Park, Brighton and went to a music festival called Sundown. The last couple months we have been through a rocky part of our relationship. There is no doubt that we love each other. I am glad to be starting 2017 with her by my side. I can’t wait to have a fresh year and journey with her. We have so many more spontaneous adventures to go on.

I have not gone through my year month by month but just the main parts of what happened in 2016.

I will be writing a new blog on my new years resolutions and what I have planned for 2017.

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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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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Update: The news I have dreaded post transplant

Hey Everyone,

 So my cretanine has been on the rise from when I left hospital from 116 to now 146 and my medication has been changed but it’s still remained high. I thought I was finally getting somewhere having my dressings and staples removed yesterday at Addenbrookes but then I get the call today to be told that the kidney isn’t working properly and I will need to stay over after my clinic appointment on Thursday to have a scan and kidney biopsy on Friday morning. Now this is shit news to have your mum donate, to go through pain and he told that the transplanted kidney isn’t working properly. Not only has my bloods shown that things just keep rising but there is also blood in my urine which isn’t a good thing. Now I am overwhelmed with emotion and tears keep falling down my face. I wish this nightmare would end but it just seems to reoccur in many different ways. Doctors and nurses say try not to worry about it but it’s not them going through it being told that their life could be snatched away again hanging by a loose thread. This is a down day and I’m just tired of being told bad news, I just hope one day that I finally get some good news but my hope keeps slowly dwindling. Will this nightmare ever end? 

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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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 🙂

 

 

 

Kidney Research UK Donations, I need your help -Monday 18th January 2016

Donations are needed to save lives, to hopefully one day find a cure. I cannot explain to people enough how much your donations count 🙂
My Mum and I are going to be doing a Body Shop Party for Kidney Research UK to hopefully raise money.
However I have a page set up and I will be forever grateful if you could send in a donations, you can choose whatever donation you want. The donations go to the charity Kidney Research UK 🙂
As most of you know I found out the devastating news that I had CKD in Feb 2015 and by May 2015 my kidneys had completely failed, I could of died but luckily I had emergency dialysis. I am very poorly all day every day and so I often feel like I am existing and not living. This is an awful disease to have and unfortunately there is still no cure.
Many people die waiting for a kidney and become too ill to then receive one or never receive one at all. Some receive kidneys which last seconds and some have kidneys that last years. The estimation of a transplanted kidney is 12-18 months. Many people with CKD will have many transplants within their life time and will be on medication and in and out of hospital and dialysis for the rest of their lives.
Unfortunately there is some horrible people out there who prey on vulnerable people and insist they no a cure and you have to may thousands to get this cure but there is no cure.
Chronic Kidney Disease is permanent and there is NO cure, but us kidney patients are holding on to the fact that one day a cure would be found and millions of people will be saved.