This week has been mostly spent reflecting on the scan experience of last week. I didn’t mention it in last week’s post as I didn’t want to run on and spoil the feeling of ‘specialness’ that came with seeing our baby for the first time.
However, it wasn’t all sunshine. I think I’ve mentioned before that I have polycystic kidney disease (ADPKD). I wasn’t sure whether I wanted to write about this on the blog but given that it’s something that doesn’t seem to be talked about a great deal, I think it’s worth a mention. Especially as when I was looking around for someone else in the same position as me when I was in my early twenties and unsure of what to expect, there seemed very little discussion around the issue (in the UK, anyway).
If you’re not familiar with ADPKD, it’s a condition where cycsts grow on the kidneys, gradually taking over the healthy kidney tissue until the kidney no longer functions, resulting in kidney failure. There is no treatment and the only option it to have dialysis and then (hopefully) a transplant once the kidneys have given up the ghost (although I believe there may be a breakthrough treatment on its way; fingers crossed!).
It’s also on the dominant gene, so there is a 50% chance that I will pass it on to the baby. Which sucks. On the bright side, if the baby doesn’t have the gene, it’s impossible to pass on, so the gene is eradicated from that line (yay!).
Anyway, you’re probably wondering what on earth this has to do with the scan. Well, it is not unusual in cases of ADPKD that cysts can also affect the liver, pancreas and spleen. It just so happened that the sonographer’s brother also has PKD so she decided to ‘have a look while she was there’.
It was quite enough of an emotional rollercoaster just seeing our baby, hearing the heartbeat and knowing everything looked alright. I wasn’t ready for an impromptu diagnosis.
Spleen, clear. Phew.
Pancreas, clear. Great!
Liver, well, I could see for myself on the screen which the sonographer had helpfully left in front of my face. Cysts all over it. Crap.
Not entirely sure what this all means other than they have done some tests to check my liver function (which I assume have come back fine as I’ve not heard anything about them) and an extra long while the registrar and consultant have a good chat about me. Although to be fair I think that would have happened given my kidneys anyway.
We’ll have to wait and see how it all unfolds…!