Hey, again!
Long time no blog... Anyway, in this blog entry I'm going to write about my transplant experience. Please note that everyone's is different... Some better, and some worse. But, I hope this will give you insight if you, or your child is getting close to the stage of needing a new kidney... Or, maybe you can just feel happy that you can relate to someone- if you're post transplant! Enjoy reading :) xx
Long time no blog... Anyway, in this blog entry I'm going to write about my transplant experience. Please note that everyone's is different... Some better, and some worse. But, I hope this will give you insight if you, or your child is getting close to the stage of needing a new kidney... Or, maybe you can just feel happy that you can relate to someone- if you're post transplant! Enjoy reading :) xx
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Okay, so I'll start with what happened on the day, and then I'll post a few photos and quotes from my transplant diary that I made at the time... And, finally I'll post a bit about my recovery stage!
A few notes before I start;
My doctors put me on the list quite early into the stage of rejection, as they didn't want me to go through dialysis. I was only on the list for just over six weeks - I was really lucky! Some people can be on the list for a long time, but don't give up!
Before we got the call- me, my parents, and my uncle all had a blood test to see if we were a match. We were planning on trialling being on the list first, instead of going straight for a live donor.
I also had to go to Nottingham (where I was going to have the transplant) to have lots of tests. They had to test my heart, to see if it would be able to undergo the operation itself, amongst other thing. I also met my surgeon beforehand, as well as having a look around the ward, and having dialysis explained to me - just in case.
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A few notes before I start;
My doctors put me on the list quite early into the stage of rejection, as they didn't want me to go through dialysis. I was only on the list for just over six weeks - I was really lucky! Some people can be on the list for a long time, but don't give up!
Before we got the call- me, my parents, and my uncle all had a blood test to see if we were a match. We were planning on trialling being on the list first, instead of going straight for a live donor.
I also had to go to Nottingham (where I was going to have the transplant) to have lots of tests. They had to test my heart, to see if it would be able to undergo the operation itself, amongst other thing. I also met my surgeon beforehand, as well as having a look around the ward, and having dialysis explained to me - just in case.
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On the day... 23.05.10
We got the call at about six am, and I had only been on the list for six weeks and two days. The first thing I did was throw up (lol), and then I showered and got ready. We got in the car and started the journey to Nottingham QMC. It's about a 2.5-4 hour drive, and all I ate on the way was some hoola hoops, armed with a sick bowl- the nerves game was strong, haha.
When we got there, we went straight to the renal ward. It was about half eight in the morning, and the first thing I had done was my cannula fitted, and blood drawn from it. I had never had a cannula before this day, and it was a painful experience as the person who did it wasn't so great, from memory. I then had to start my very long wait, whilst my blood was tested against the kidney that was here for me.
It was actually the hottest day of the year, at the time...
At about eight pm a man came up to the ward and started talking to me, and my parents about the procedure. We hadn't actually had the go-ahead signal yet, so we had to ask him if this meant the operation was happening. And, it was!!
So, I was wheeled down to the operating theatre, with my dad. My mum didn't want to come in, as she doesn't like it when you get put out. I remember lying on the bed, and the man gave me an oxygen mask, and I said that it smelt like strawberries. He said to me 'I think that too, everyone else always says that it smells like cherries.' After this, he started to inject me with the anaesthetic. I remember crying a little bit just before/as this was happening... And, then I was out.
I don't remember anything at all about being woken up. Apparently I punched the professor... Anyway, my parents told me that I was screaming and pulling at the wires - whilst in the recovery room. And, then I was taken to the PICU unit- the high dependency ward was closed, due to lack of patients. I was hooked up to a lot of stuff, and I had to have this oxygen mask that blew hot air into my lungs, because of some problems that I had breathing. I wasn't with it very much in ICU, but I was only in there from the Sunday to the Tuesday. I met a really nice nurse called Chris, he was lovely.
Once I was on the main renal ward, I was in my own room. My parents alternated between staying twin me (I was 13 at the time), and I stayed here for three weeks. Every morning I'd be woken up to have bloods taken- at first out of the line in my neck, but as I neared home time they took the line out, and did the bloods from my arms and hands.
The nurses were all so lovely and amazing! I had the operation done at the QMC in Nottingham (England), and I can't thank the renal ward staff enough. Also, one of my consultants worked there, so it was good to see a familiar face every so often.
I'd say that it took a good eight months to recover fully from the after effects of everything relating to the transplant. I was in hospital for three weeks (because we lived so far away from the hospital, they couldn't just send me home after two, and then see me for regular blood tests afterwards.) I also had quite a few months off school, as you need to be careful with the immune system side of things post-op. I went back to school for one week, but then fell ill again... And, luckily after this it was the summer holidays - and, year eight wasn't an important time in school to overly worry about missing.
I was in and out of hospital a fair few times in the coming months - due to sickness bugs, and some other illness'. I also had to have some biopsies, due to my kidney not working as well as they'd hoped. It was described as working well if I was an adult, but not quite so good for a child. It was dormant at first, and it also took a lot of chopping and changing my anti-rejection drugs to get things to work smoothly. I have been on each drug you can be on, but now the trialling period is thankfully over, and I'm on 7m.g. of Tacrolimus. My kidney does have some scarring from being on too much Tac at first, but now things are okay.
In 2012 I also experienced acute and antibodies rejection, and I had to stay in hospital in order to have the right infusions to defuse the problems. This was obviously a worrying time, but thankfully the treatment worked.
So, today my creatnine sits at around 150. I will have to have another transplant in the future (in the adult clinic, which means no playing hangman with my hilarious guy nurse), and this time one of my parents will donate.
If anyone has any questions, please comment on this, or message me on Facebook!
Thanks for reading! :)
- Sam x
Me, a few days after my transplant.
The nurses were all so lovely and amazing! I had the operation done at the QMC in Nottingham (England), and I can't thank the renal ward staff enough. Also, one of my consultants worked there, so it was good to see a familiar face every so often.
When I was feeling a lot better!
I'd say that it took a good eight months to recover fully from the after effects of everything relating to the transplant. I was in hospital for three weeks (because we lived so far away from the hospital, they couldn't just send me home after two, and then see me for regular blood tests afterwards.) I also had quite a few months off school, as you need to be careful with the immune system side of things post-op. I went back to school for one week, but then fell ill again... And, luckily after this it was the summer holidays - and, year eight wasn't an important time in school to overly worry about missing.
I was in and out of hospital a fair few times in the coming months - due to sickness bugs, and some other illness'. I also had to have some biopsies, due to my kidney not working as well as they'd hoped. It was described as working well if I was an adult, but not quite so good for a child. It was dormant at first, and it also took a lot of chopping and changing my anti-rejection drugs to get things to work smoothly. I have been on each drug you can be on, but now the trialling period is thankfully over, and I'm on 7m.g. of Tacrolimus. My kidney does have some scarring from being on too much Tac at first, but now things are okay.
In 2012 I also experienced acute and antibodies rejection, and I had to stay in hospital in order to have the right infusions to defuse the problems. This was obviously a worrying time, but thankfully the treatment worked.
So, today my creatnine sits at around 150. I will have to have another transplant in the future (in the adult clinic, which means no playing hangman with my hilarious guy nurse), and this time one of my parents will donate.
If anyone has any questions, please comment on this, or message me on Facebook!
Thanks for reading! :)
- Sam x
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