future planslifepre-dialysis

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

I have Chronic Kidney Disease. More specifically, glomerulosclerosis. This ridiculously long word simply means that parts of the inside 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 normal healthy kidneys.

Obviously this is less than ideal, and since August 2014 I have 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 a teaching 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 my blood test results came back as abnormal, my GP, who had been my paediatrician since childhood, was slightly concerned, so 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.

At this point, I had no idea what nephrology even was, but very quickly learned why I was there. Something was wrong with my kidneys. In fact, something was very wrong.

In January 2011, after a couple of minor misdiagnoses, I was diagnosed with Chronic Kidney Disease.

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

This was because the treatment consisted of chemotherapy and high doses of steroids. Pretty heavy duty stuff. After much deliberation, it was decided it was in my best interest to hold off on that for the time being, monitor my symptoms and blood tests results closely, and see what happened next. It wasn’t yet known whether I’d continue to deteriorate, or whether things would settle down by themselves, and I’d have no further problems.

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

By February 2012 things had begun to deteriorate further, and I started treatment that, at least at the time, was the most intense thing I had ever experienced.

I was poked and prodded and scanned and biopsied. Steroids were taken and weight was gained (and then lost…and regained..and relost…). I discovered that chemotherapy (Rituximab) is not only for cancer patients, 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!

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. Although the damage to my kidneys was not repaired, it had stalled, and we began to hope that 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 if/when I was healthy again, I would travel to the UK to explore and to visit a close friend who had moved back there to live in the middle of 2011.

As a result of everything I experienced, I learned that although it sounds eye-roll worthy, life is short, and none of us are guaranteed tomorrow. In light of this, I figured why go on holiday to the UK when (as a result of qualifying for the correct Visa), I could move there to live?

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

One of my absolute favourite pictures ever. Cumbria, UK.

Unfortunately, I relapsed in October 2013, and quickly became very well acquainted with the nephrology department of what was now my local hospital, which, fortunately, is a large teaching centre. Back onto steroids I went, and more Rituximab was scheduled for April 2014, our thinking being that it helped me last time, and we might get equally lucky again.

This time it only partially worked, my kidneys continued to deteriorate, and in August 2014 I was placed on the transplant list. I will never forget realising “how sick” I really was. I spent the best part of a year in the suspended category due to periods of being “slightly too healthy”, but in August 2015 I was officially activated. I could get a phone call at any time and find myself rushing to Manchester in a great hurry, ready to start the next chapter of my life.

While I’m waiting, I’m working full time, trying to stay as healthy as possible and just generally trying to make 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!

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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