Nephrostomy: What works and what does not work?

Last week I had a procedure to insert a stent into the outlet of my right kidney, to allow urine to empty freely into my bladder. I needed a stent because my tumours have clustered round this outlet and basically clenched it shut.

I know the urologist who attempted this procedure did his best for me, but he couldn't manage it. He said he had tried for half an hour, and could not even get dye into into the outlet because the grip of the tumours was too strong. Because it is so tightly gripped, it's unlikely that they'll be able to get a stent in from the other direction either.

The stent procedure failing meant I had gone through a total anaesthetic and quite a painful few days recovery for my bladder and urinary tract, for no outcome. I did feel disappointed.

So now the alternatives that are left for me are either a nephrostomy, or to do nothing.

A nephrostomy is "an artificial opening created between the kidney and the skin which allows for the urinary diversion directly from the upper part of the urinary system (renal pelvis)".

The MDT that met and talked about this (in my absence!) decided it was definitely the best thing for me.

I like to think things through for myself too. Ultimately it's my body and me who has to make a life-altering decision like this, so anything that will help me with this is useful.

Think About Your Life has a whole set of tools that can help with the decisions that affect people when they have cancer and other life altering conditions. Another good source for tools is the 'Living Well' document designed by HSA and Lancashire County Council.

I decided to use the person centred thinking 'working/not working' tool from 'Think about Your Life' to think about what works and doesn't work for me about having a nephrostomy.

Here are my own reflections:

I've shared my thinking here to show how the tool works. Using it is helping me come to terms with the idea of pushing a plastic tube into my kidney and then walking around with a bag of urine for the rest of my life. It's not an attractive prospect I agree, but on balance it's far better than the alternatives, and I have some positive actions to follow up.

Other actions I'm taking are to seek out other people with nephrostomies, I hope there is a really good facebook group that provides support, similar to the way 'Get Your Belly Out' gives big confidence to ostomates with ileostomies and colostomies. Let me know if you've come across anything like this!