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November 13 2014 5 13 /11 /November /2014 22:40
Swollen legs from NKF
Swollen legs from NKF

I was meant to update my blog at 6 months but I have been so busy that it totally slipped my mind.

Clinic has now been moved to monthly which is great news.

I had to go back to the doctors about my ears but they finally prescribed me something and after a month both ears seemed to be fine.

Ophthalmology appointment has been moved to January so will see what they they say then (no pun intended).

Due to pain in my hands and feet and the fact I cannot tell the temperature when in water now I was referred to neurology.

I had a nerve conduction test today and the major nerves are fine but the smaller ones cannot be tested and therefore they could be causing me problems. I have another neurology appointment in February so we will see if anything can be done then.

We managed to go to the NKF event in Blackpool and I thoroughly enjoyed it.

Did a lot of walking that weekend and my ankles and legs really swelled up and took a few days to reduce. I didn't let this dampen my spirits though and took a lot of useful information away with me. The demonstration by famous chef Lawrence Keogh was brilliant and great for dialysis patients. It was also interesting listening to his life story with kidney disease as well.

We spent 6 days again at the In Laws and spent some quality time with my daughter as well. I still cannot get used to being able to go away without the need for dialysis and will always be eternally grateful to my donor.

I have had a few rough days here and there but nothing serious thankfully. As I am still in my first year of the transplant this is to be expected, no transplant is plain sailing and I am sure most patients will tell you that.

I am still trying to do my voluntary roles where I can but I had to cancel some dude to illness which is why I know I am not 100% ready for work as a boss would not be so understanding.

We have had a few family health issues as well but as a family we work through these and hopefully all will settle down in the near future.

My beautiful daughter just turned 7 and I cannot believe how quick time has flown. I can still remember the grueling dialysis sessions when pregnant but was worth every second.

We are planning on being away for Christmas and New Year and have worked my Eculizumab infusions to fit in. Just hope I can be well enough for it.

Anyway as you can see my health remains stable and hoping it stays that way.


Lisa xx

Having an Eculizumab infusion

Having an Eculizumab infusion

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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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