After a month of waiting for my kidney biopsy results we finally had the call.
My nephrologist went through my family medical history, gave us the briefest explanation of what alport syndrome is;
"Image your kidneys are tea-bags. They filter the waste in your body. Your filters are broken and are allowing too much blood to filter through. So you have large holes in your teabag so it's allowing leaves into the tea".
That's all we were told over the phone. We don't know where my kidney function levels are at. We don't know where my potassium/sodium levels are at. And we don't know if the cysts invading my kidney are related to the alport, or if I'm unlucky enough to have PKD ontop of the alport diagnosis.
We were sign posted to alportsyndrome.org.uk but, as this is a patient led organisation, the answers and information we need to understand the diagnosis just isn't there.
I do however have my genetic tests this week, so hopefully in a fortnight the rest of my family can have the answers they need to find out which gene is causing our problems.