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August 8 2014 6 08 /08 /August /2014 17:41



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







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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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