I had to check today as my fistula seems to disappear when i straighten my arm. Nurse at the QE says its "positional", and the buzz is till good at the moment.
Monday 27 July 2009
schedule
My mum has now cleared stage 2 of the live donor assessment so just a meeting with the surgeon and then that's all done.
27th July - fistula
My fistula is still buzzing away but seems to go quiet sometimes which worries me and then my heart beat increases and then it comes back so its a strange one. My arm is also a little numb below the cut but i guess thats the nerves close to the skin that need to repair themselves.
Friday 24 July 2009
History
My history goes as follows: Just as I thought I hadn’t really said how I got here!
1985 diagnosed with PKD at 16 after I had a routine urine test that showed up protein in my urine.
Had a normal level of function for 10 years with no illness or outward signs of a problem
In 1995 I was diagnosed with slightly high blood pressure and given drugs to lower, this went on for a few years and after annual trips to the hospital and regular GP care I eventually ended up on 3 sets of pill for blood pressure (atenolol, indipamide and amplodopine).
In 2005 my creatinine level was 147 but rising and by 2007 it had risen to 300, so I knew something was going wrong, which was expected anyway.
In June 2006 I started to notice that my stomach was getting larger but my weight dropping, so after a visit to the docs (and a misdiagnosis of Hodgkin’s) it was confirmed my Kidneys were growing very large indeed. They are now huge and are pushing on my diaphragm and hence im loosing some lung capacity and finding it very difficult to eat large amounts, so the weight is going as well.
Now in the middle of 2009 my Kidneys are the sixe of rugby balls and at 11% function. I’m still living at totally normal life and but now know that I need a double nephrectomy before I can have a transplant as there is simple no room for my donor kidney.
At the beginning of the year my wife, brother in law and my Mum all volunteered (along with many of my friends) to give me a kidney, after first stage tests all three were suitable. It was decided that my mum wanted to progress, which was a difficult decision.
It’s amazing that so many people were actually prepared to give me a part of them in order to make me better, its something I will never forget. And to those people I will always be indebted. To my wife, brother in law and mum I will never be able to thank them enough for what they wanted to do, not properly anyway.
My wife (and family) has always been by my side through this and its getting more and more difficult for her in particular, if your reading this then I would image g you are affected by PKD or know someone who is, having someone to hold your hand when your told new things and visiting hospital has been so important for me. Even if I don’t hold her hand enough, is what she would say!!
Now I have a buzzing arm, ive got huge useless kidneys and have a donor so I thought it would be a good idea to put down in writing my experiences for all to read.
dietician
Oh and went to the Dietitian yesterday as well, didn't tell me anything i didn't know really, limit salt, limit potassium, limit phosphates, but did say that at this stage with a creatinine of 484 i should just eat well and make sure i have enough carbs to make sure I'm strong enough for surgery.
Fistula
I had my fistula put in on Monday 20Th at the Queen Elizabeth hospital. Its been put on my upper arm as my vein's were deep in my forearm. The cut is along the bend in my arm so its quite painful but i do have a good buzz sensation and i can feel something across my bicep also. Looks like it went OK. Dressings changed every 2 days. Stitches out at 14 days.
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