future planslifepre-dialysis

CKD & Me (Or, why I write this blog)

I have Chronic Kidney Disease (CKD). More specifically, glomerulosclerosis. This ridiculously long word simply means that parts of my kidneys (the glomeruli) are scarred (sclerosed), and therefore don’t work. I currently have a glomerular filtration rate (GFR), of 13, which equates to about 13% of function.

Obviously this is less than ideal, and since August 2014 I’ve been on the waiting list for a kidney transplant. I am not yet on dialysis, but that’s almost certainly going to be in my future.

So how did I get to this point?

On September 20th 2010, I felt sick. I was a 23-year-old primary education student on placement in a classroom full of five-year-olds, so I assumed I’d caught something from one of them. Off to my GP I went for some blood tests to get a medical note to excuse me from placement. “Don’t panic”, said a friend, “You probably have the flu.” Ha.

When the results came back as abnormal, my GP sent me to the hospital for further tests. After spending several months bouncing around a few different departments, I eventually I ended up in nephrology. I very quickly went from not really knowing much about kidney disease at all, to being quite scared over how serious it could be.

By January 2011 I had an eGFR of 30, so while things were certainly looking less than stellar, they weren’t yet severe enough to warrant treatment – much to my surprise!

This was because the treatment consisted of chemotherapy and high doses of steroids. Pretty heavy duty stuff. After much discussion of potential benefits vs. side effects, we decided to hold off for the time being. My medical team monitored my situation closely, and we waited to see what would happened next. We didn’t know whether I’d continue to deteriorate, or whether things would settle down and go away on their own.

This “wait and see” approach continued for the next year, during which I tried (with varying degrees of success!) to ignore what was happening. I graduated from teachers’ college and started working full-time as a pre-school teacher. Four year olds were quite a good distraction from most things!

By February 2012 I had deteriorated enough to need to start treatment. I was poked and prodded and scanned and biopsied. I started taking steroids and gained (and then lost…and regained..and relost…) a load of weight. Alongside everything else, I also discovered that chemotherapy (Rituximab) is useful for treating kidney disease as well as for cancer, a significant percentage of my friends and family have a bizarre fondness for surgical masks and gloves and that when your hair starts falling out, your drain tends to clog!

kidney disease treatment
My view for much of 2011 and 2012. Long hours spent in hospital infusion suites.

In early 2013, I reached “remission”. The steroids and Rituximab had worked. My kidney disease wasn’t cured, but it had stalled. I felt like I could start to move on with my life.

Back when I first started treatment, and I realised I was facing a long road over unknown ground, I told myself that when I was healthy enough, I would go to the UK to explore and to visit a friend who had moved back there to live in the middle of 2011.

As a result of everything I experienced, I learned that as trite as it sounds, life is short, and none of us are guaranteed tomorrow. In light of this, I figured why go on holiday when I could move there to teach?

So that’s exactly what I did. My newly “healthy” 25-year-old self left New Zealand on August 9th 2013, and eventually settled in northern England. For the next couple of months, life was pretty good.

moving on with my life after kidney disease
One of my absolute favourite pictures ever. Cumbria, UK.

Unfortunately, this didn’t last. I relapsed in October 2013, and quickly became very well acquainted with the nephrology department of my new local hospital. I started steroids and Rituximab again in early 2014. We hoped that since it helped me last time, I might get equally lucky again.

This time it only partially worked. My kidneys continued to deteriorate, and I was placed on the transplant list in August 2014, and I think that’s when I realised “how sick” I really was. For almost a year, I was in the suspended category due to being either “too healthy” or “too sick”, but in August this year I was activated. I could now get “The Call” at any time.

While I’m waiting, I’m working full time, trying to stay as healthy as possible and just generally making the most of the life I’ve got, while I’ve got it, even though it certainly wouldn’t have been one I’d have picked!

my life outside of kidney disease
One of several other things I do when I’m not a renal patient; Kiwi Owl to a group of Brownies in Lancashire North West!

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