livelifelisa

Hi

So the 4 month mark has been and gone and my oh my can I see a change.

I have gone from attending clinic twice a week to once a week and my Eculizumab is fortnightly.

 Eventually If I remain stable my clinic appointments will be even less often, the Eculizumab infusions should always stay fortnightly for as long as the kidney lasts.

My clinic appointments don't last long it's more of the waiting to have my blood tests done that is most time consuming.

I seem to of settled into a routine now and life feels so much easier. - still weird not having to plan things around dialysis when you have done it for so long.

My blood levels have been up and down slightly with regards to the phosphate and magnesium but I think we have found a good balance now with the medication.

I don't seem to have any side effects from the Eculizumab but I do seem to get very hot for the first few days after the infusion especially.

Over the last few weeks my hearing and sight don't seem to be right so I have had them both checked out.

My eye test revealed my right eye had slightly deteriorated but not enough to warrant glasses (I could still just about make out the bottom line of the letters at the opticians).

It was more the feeling of focus in general which I find hard to describe. It's not cloudy or blurry but seems an effort to concentrate on everything like I am tired for example. The opticians have referred me back to my GP who is now checking with my eye specialist if he needs to see me to check on my previous scarring behind the eyes.

I also went and had my ears checked and apparently I have what is known as a vacuum within the ear and it is sort of sucking the ear drum in. Decongestants are normally used but I am not allowed them due to my medication. I now have to do an exercise with them 4-5 times a day and in around 7 weeks it should of cleared up.

Last week we went and stayed at the In Laws for 6 days and it was brilliant.

Being able to spend time with family by the sea, eating and drinking what I want with no dialysis.

I still had to have afternoon sleeps and take it easy as my ankles are still swelling but the freedom I experienced was perfect.

We all had so much fun and throughout I just kept thanking my donor in my head. The hospital has confirmed it was a man which I have always said I thought it was.

Now as long as I stay stable we are hoping to go away in September/October for a mini holiday.

We have lots coming up as well. Another stay at the In laws, a weekend at the National Kidney Federation (NKF) AGM which I am hoping I can enjoy more this year as last year I was a guest speaker.

Plus a weekend away next year.

Anyway that's all from me for now

TTFN

Lisa

xxx

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

Hello Everyone..

So I said I would start 2014 as  positive as possible and this is definitely the way forward so much as happened in such a short space of time already.

Last year I decided to start a project about making a mini movie about patients on dialysis who had either had a transplant, needed a transplant or unfortunately passed away before they had a chance.

After all the misleading publicity in the media lately about dialysis patients and transplants I wanted to put the record straight about what we as patients actually go through.

Then disaster struck I lost the work I did and felt very disheartened and gave up on it.

When 2014 began along with my new positive attitude I decided to give it another go and would link it to World kidney day in March.

I posted it on you tube and I am so overwhelmed by the feedback it has gotten already.

Due to this I have become a World Kidney day Champion. This means I have promised by making this video and sharing it on social media sites and also I plan to run a stall at a health information day I am involved in to promote organ donation, more people will be made aware of kidney awareness.

On the 17th Jan I was officially accepted onto the transplant waiting list -YIPPEEE after all these years of waiting it finally happened.

So that nervous feeling now waiting for the phone to ring. Then I was on dialysis on the 23rd Jan, (just 6 days later) and the phone rings, Yes you guessed it , it was Birmingham hospital to say I had matched to an altruistic donor.

Now for those who are not aware of waiting times this is incredibly quick. Average waiting time is 3-4 years but can be 1 day to 20 years.  They had obviously taken into account my "waiting time" of 8 years which is how long I should of been on the list had I not had a rare genetic disease.

I was speechless and so emotional but excited as well.

I have had an up to date heart echo and this has come back as good and today I went to QE in Birmingham to see a physician to talk about a plan for going in.

As I have a rare disease I needed to discuss when to start taking the drug I need for the kidney not to be attacked again like last time.

The meeting went well and we are hoping for a date in mid- end of March.

We agreed we would like to have a look around the ward next time we went and also to speak to a psychologist as with transplantation comes a lot of mixed emotions.

So in  just over a month so much has happened already.

I will keep you all informed of the progress and I will attach a link of the World kidney day video I made as well.

Thanks for catching up

http://www.youtube.com/watch?v=gAED7_rfOng

TTFN

Lisa

xxxx