Kidneys. Not the most glamorous of organs. They are not the biggest, they don’t quite have the high profile of say the heart or lungs; they don’t have super regenerative powers like the liver and the most that anyone probably thinks about them is when they are a bit achy after a big night out on the booze.
That’s how I felt about them until my Boyfriend (who we will call C) had some tests done about seven years ago and was diagnosed with the very hard to say IgA nephropathy (nuh-FROP-uh-thee) also know as Berger’s Disease. I’ll refer to it as IGAN because it is much easier to spell. Even when we first got the diagnosis and learned about the potential long term implications, we didn’t think much more about it and the impact on our lives (other than C’s daily meds to control blood pressure) was minimal.
Then, over the years C’s kidney function – measured as glomerular filtration rate (GFR) – began to drop. Phrases such as “Chronic Kidney Disease” started to feature in our life alongside increased blood tests and a rising sense of this being something more that a distant potential threat.
The progression from Stage 3 to Stage 4 was rapid and happened over just a couple of months during the 2017/2018 Winter. We started then to join the dots between unrelated minor symptoms that became the sinister herald of more to come. His itchy, restless legs; a constant tiredness and creeping lethargy; the bone deep cold that would not shift no matter how high we put the heating up, or how ever many layers C bundled himself up in.
Finding out C’s CFR had fallen to 19% was the trigger for conversations with his renal specialist to start to include words like Transplant and Dialysis – life changing concepts that drove me to sit up and really start taking notice to something that really was not going to go away. I started to attend appointments with him and requested to be considered for becoming a living donor. This far of distant danger was now sitting front and centre in the middle of my living room; putting its muddy feet on my sofa and showing no sign of going away.
And here we are now – about to face some serious, big scary stuff that I have no idea how to handle. I’m hoping I can use this blog as a place to record our experiences; keep a track of useful things and start to share some of that with others. Because this is a terrifying place to be in, and no one should be here alone.
I don’t know what the future holds, just that it is coming whether we want it to or not – so I’m going to make sure I’m ready for it.