I'm Gill. I thought I would document my Dialysis Adventure for 3 reasons.
1 - It helps me deal with it if I can write it all down & share it with people. Even if no-one reads it.
2 - I'm sure everyone on my facebook friends list is sick to death of seeing constant updates, so sharing it here makes more sense. And....
3 - Hopefully if someone who is going through the same thing, they can get a non-medical, first -hand account of what the journey was like, although I am aware everyone's journey will be different.
I'll give you a bit of background into why I'm now on dialysis.
I was born with a heart murmur & Spina Bifida in the Summer of 1967.
Luckily for me, the lump on my spine was at the base which meant that I only lost some of the nerve endings which go to the lower half of my body.
I had heart failure as a tiny baby and at the age of 4 it was discovered that my bladder wasn't functioning so it was removed and I was given a Urostomy.
I had a very happy childhood and don't really remember my disability being much of a problem, not to me anyway but I'm sure my Mum would say different. I have 3 sisters, all healthy, and I was pretty much treated just the same as they were.
I went for twice yearly appointments to Pendlebury Children's Hospital in Manchester right up to the age of 16 and was in and out of hospital during those years having various procedures done, resulting in approx 20 operations.
From 16 to around my late 20's, I enjoyed excellent health & excellent fitness. I married and became a publican with a gorgeous Freehouse in Essex, The Three Horseshoes and life was very good for a while.
In 1994 I contracted Endocarditis (I have no idea how although a trip to the Dentist was suspected as the cause) and was in hospital for a whole month on 4 drips of powerful antibiotics a day. I got so bored the ward nurses taught me how to make my own drips up and sent me home for the last week of treatment
I recovered well from that and everything was groovy until 1997 when my urostomy started throwing a wobbler and it was decided it had to be re-sited.
So after a 2 week stay in The Middlesex Hospital in London I had my old urostomy closed off and a new one created. The old one had been on the right side of my tummy, the new one was put on the left. Its lucky I'm not a fan of wearing a bikini as my tummy looks like some strange patchwork pattern!
When I think about it, this may well have been the beginning of the process I now find myself in. After that op I went for regular outpatient appointments with the Urology & Nephrology teams. One consultant, Mrs Venn, was concerned about the amount of UTI's I was having and ordered a Loopogram to be done (a Loopogram is an AWFUL x-ray/investigation) this showed that the uretas which go from the kidney to my stoma were a bit saggy which was allowing something called Reflux, where the urine sits in the saggy bit & flows back to the kidney damaging it. An operation was suggested to shorten the uretas but that option was discounted, I know not why... sadly, if it had been done then, I might not be in this position now.... ahhh well.
Life moved on, illnesses came and went. After a divorce, meeting a new fella & moving to Manchester to be with him, I was now 10 years older and becoming increasingly less mobile.
In 2008 I sadly had to stop working because of other health problems related to my spina bifida & nerve loss. During this time I had a series of very bad falls which resulted in me dislocating my knee, I ended up having to have a total right knee replacement in 2013 which ended months & months of chronic pain but reduced my mobility further.
My kidney function has been going down and down slowly but steadily for years & I have always been under the care of various Urologists & Nephrologists, including the lovely Dr Venning at Manchester Royal Infirmary.
In September 2014 at a routine Nephrology appointment, I was told the time had come to be referred to the Low-Clearance Clinic (or Pre-Dialysis). And so it was....
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