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April 3 2014 5 03 /04 /April /2014 13:40

So its Thursday 20th March and I have just rang  the Queen Elizabeth (QE) hospital in Birmingham to check they have a bed to make my way down.

They have told me to come straight down and go to the dialysis ward, so far so good.

Traffic isn't too bad and we get there for just after ten which is perfect as I am not expected to dialyse till about 1pm and then have the Eculizumab ( the wonder drug we have been fighting for, for so long) at around tea time.

As we make our way to the bed I have been given on the dialysis ward they now inform me I'm going straight on the machine. I explained that I hadn't put the emla cream on my arm yet to which I am told by the ward sister I am late already and I should of been here at ten and she has another patient after me. I explained I wouldn't be able to needle myself without the numbing cream but she had no sympathy plus I was told I wouldn't be dialysing till 1pm and therefore I wasn't late as the changes were not passed onto me. She just walked off.

Luckily the nurse was lovely and told me to put the cream on quickly and she just wandered around doing some jobs, she could see I was distressed and anxious about everything.

By the time I got my needles in it was past 11am anyway. The dialysis did not go well and I felt quite rough afterwards but they let me come off a little early.

I made my way down to the transplant ward where they were quite rude on reception and I was told to wait in the dayroom as a bed was not available at the time.

I was beginning to feel really upset and stressed now, so far I felt left in the dark and no friendly faces either. I'm just glad I had my husband with me.

Then Michelle, one of the transplant co-ordinators came to see me and explained about all the miscommunication, she couldn't apologise enough and immediately I started to feel better.

I finally got a bed in a side room with a lovely view over Birmingham.  I had my first infusion of the drug and luckily it went through without any reactions or side effects.


Friday 21st March

I didn't get much sleep due to being a bag of nerves but now was the big day.

Chris came in early and I started to get prepped for surgery.

I remember being wheeled to theatre, saying a quick goodbye to Chris and I felt so emotional he quickly left my side and I could tell he was scared.

In the anaesthetic room we went through the usual checks but the cannula wouldn't work so a new one was put in.

I remember he flushed it to check it worked then rather than tell me he was going to put me to sleep or count I just remember someone saying Lisa, Lisa, the room span and then what felt like a black wall appeared into little boxes and slammed right into my face then I was out cold.

 

I woke up in my room I think, as usual I was on morphine and nothing made sense I just knew I was alive and weeing!!!!!!!

I remember Chris telling me to shut up and sleep as I wasn't making sense - well that is nothing new I'm like that without morphine...

I was uncomfortable and just in and out of sleep, I think I had a slice of bread and butter but my throat was so sore from the tube they put down I couldn't swallow.

The next day I passed 12 litres of urine I was so pleased.

 Each day I got better but like my last transplant I got constipated and the pain from that was worse than the actual transplant. After a couple of days things began to settle and I was determined I would be home for mother's day.

I came off the morphine within 4 days and just took paracetamol, I have such a low pain threshold I was surprised by my own strength and willpower.

The staff were brilliant on the ward and some went really out of their way to make me comfortable, their bedside manner was outstanding.

I made some lovely friends whilst in their especially one who had also had a kidney transplant two days after mine. She also had a baby on dialysis and it seemed we were so alike it was nice to go through the same experiences together.

It was really weird though as we both named out kidneys Kevin on the same night without the other one knowing!

 

I finally got discharged on the Friday a week later. I was going to be home for mother's day after all.

 

I am healing well, I have been back to the QE to keep a close on my bloods and to have my drug infusion as well.

At the moment I am retaining some fluid in my ankles and in my stomach around 4-5 litres but they are hoping this will sort itself out.

There are currently no signs of the disease returning but we are a long way off being safe just yet, we take each day as it comes.

I have to go back in two weeks to have a stent taken out which I am dreading as I hate local anaesthetics but they have said I can be sedated.

 

I have been told the donor is doing well which was important to me.

I often pray for them for what they did is giving me another shot at life and happiness and I will never forget this selfless act.

 

TTFN

 

XXXX

Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
Coming through the other end!!
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  • : livelifelisa
  • : I decided to write a blog about my life on dialysis. Originally there was no option of a transplant due to a rare genetic disease but all this changed. I want people to try and understand what myself and my family go through, not just the bad times but the good as well. Hope you enjoy my story!!
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