PatientView & Ostriches

When I was first diagnosed, and as I started to understand how serious my condition was, going to clinic, and having the blood tests beforehand, became a massively anxiety-inducing experience. I would absolutely dread it. Even though PatientView was an option, and I had an account, I hardly ever used it. I didn’t want to know. At least in my mind, if I felt ok, or even “sort of ok” then I. Was. Fine. If

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Eight years, balance, & whether I’d go back.

I was diagnosed eight years ago this week. I remember sitting in the clinic with my parents and having loads of information thrown at us. At that stage there were far more questions than answers. I had absolutely no idea what most of it meant then, let alone what it would continue to mean eight years later. It’s been both so much worse and so much better than I ever expected. I remember leaving the

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Chapter IV: Here we go again.

Unfortunately, I relapsed in October 2013, and quickly became well acquainted with the nephrology department of 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 slowed things down last time, and we might get equally lucky again. This time it only partially worked. My kidneys continued to deteriorate, and I was placed on the transplant list

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Chapter II: Waiting when you don’t know what you’re waiting for.

In January 2011, I had an eGFR of 30. This equates to a rough percentage of kidney function, so while things were certainly looking less than stellar, they weren’t yet quite severe enough to warrant treatment – much to my surprise! This was because the treatment consisted of chemotherapy and high doses of steroids, both of which have some pretty serious side effects. After much discussion, it was decided it was in my best interest

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Chapter I: When it isn’t the flu.

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

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