Kidneys

[MsLizD]

Has anyone had kidney drain proceedure involving tubes to drain outside body

[CharlotteSo_UK]

Hi. My mum had a permanent nephrostomy in September last year from the right kidney. They typically insert them in the back but for some reason mum’s is at the front. Makes it easier for sleeping!! There have been a few issues along the way, wound got infected and tube has come out unexpectedly but other than that, mum is managing it really well. I don’t think we were given enough advice to be honest right at the start, in terms of how often it is changed, how often the wound dressing should be changed, as well as how to change the bags, attach night bags etc. I could go on! We’ve learnt along the way though and mums doing really well. Let me know if you had any questions for mum - she’d happily share her experience. Charlotte

[MsLizD in reply to CharlotteSo_UK]

Thank you Charlotte for your response. I was told that this is what I needed and my first reaction was to refuse. Having had a few days to think about things, I am now wanting info, I'm trying to speak with a urology specialist nurse but it's good to gain advice from someone who knows firsthand.

One question, when the procedure was first done was the drain going into the bag attached to the body? Recently I have seen two people carrying racks with the bags in which terrified me as this would be so life changing.

Good wishes to your Mum and you, and once again thank you.

Liz

[CharlotteSo_UK in reply to MsLizD]

Hi Liz. There is a tiny tube (approx 3mm if that in width) that comes directly from the kidney outside the body. The tube outside of the body comes to where the pelvic bone is. At the end of that tube is a bit you screw the bag onto. The bag itself is not huge (I’ll try to send you a photo). You can secure the bag to your thigh with Velcro belts. Mum uses a night bag too as it holds more and she doesn’t have to get up at night any more! You may have seen people using these.

Yes there are some downsides. Mum can’t go in the pool on holiday anymore and can’t wear jeggings but it’s a small price to pay. She’s coped really well and no one would know she has it at all.

Bags need to be changed every 5 days or so and you really need to make sure you have a good stock! Plus night stand if you opt for night bags, antiseptic wipes and gloves when changing. Wound also needs to be dressed every week.

Mum has her wound at the front and I think this has helped. Last year they gave her one temporarily but it was in the back and that was not comfortable for her in terms of sleeping and just keeping an eye on it!! Xx

[MsLizD in reply to CharlotteSo_UK]

Thank you Charlotte, so good to have this info.

Liz

[CharlotteSo_UK in reply to MsLizD]

Can I ask why they said you need it? Mum was suffering from so many infections they decided this might ease it. And to be fair, whilst I think the hospitals mismanagement of mum contributed to the continuous infections, it really has helped combat these somewhat xx

[MsLizD in reply to CharlotteSo_UK]

I had a kidney function test which came back as low which ment I couldn't have chemo, body not being drained of toxicity which would ultimately lead on to illness.

[CharlotteSo_UK in reply to MsLizD]

Hmmm, tried to upload a photo but couldn’t fathom it out!! So I measured it instead. Bag is approximately 13cm by 20cm so not big at all. Hope that helps!!

[MsLizD in reply to CharlotteSo_UK]

Thanks, Liz

[Amerthist]

Hi. I had nephrostomy in 2006 for several months. The tube went into my back. I was able to continue working and didn't really have any problems apart from the tube pulling out of the bag the add time. The reason I had to have it was the ureter, the tube from kidney to bladder had narrowed and the urine couldn't get out of the bladder. I subsequently had surgery to widen it. This was nothing to do with cancer as at that time I didn't have it. I was very upset when told I needed the nephrostomy but it was my nearly as bad as it sounds.sending you lots of hugs

Anne

[MsLizD in reply to Amerthist]

Thank you Anne for your response.

When first told I didnt want to have this procedure but the more I find out, the more I am coming around to the idea.

My main concern was seeing two people just recently having tubes being drained into bags that were being carried in racks, rather than bags beingdiscretely attached to the body. I am wanting to speak with a urology nurse specialist to find out more, but of course someone who has had the experience really knows so thank you for your reply.

Good wishes, Liz

[Lizchips]

No , but I do have a lymphocele, fills up with lymphatic fluid, I get that drained every 3 months, it puts pressure on my bladder