Kidney failure

Thank you Dave for your reply ,

ww made it home last night, I noticed quite a lot of blood in the bag and a cloth when gary was having a shower . He managed to get a good 5 hours sleep so that’s a massive improvement. 

He needs to return on Monday morning to the hospital for blood tests and a scan so we should know a bit more next week . 

 No not yet ..

they told him it will be in the next 5 weeks , I thought that was a long time to wait 

fiona

In our area in the "home environment" a night bag can be used for 7 days. Single use also has an hospital definition meaning only use on one patient. Some night bags have a tap that means they can be emptied and reused, with some other bags you have to break the tap off or cut the corner of the bag off. What night bag have you got.

I have had a catheter constantly for the last four years. Some areas and district nurses say a new night bag each night , our area will only issue one night bag for 7 days. 

A leg bag is good for 5-7 days. Again there are two schools of thought on nights / leg bags. I attach my night bag to the leg bag at night, in the morning I detach the night bag rinse the outlet and inlet and leave it for the next use. 

Others prefer to remove the leg bag and replace it with the night bag. The issue I have with that is NHS advice says once an item is removed it should be replaced with new. The exception being the night bag. Over a week constantly disconnecting the catheter twice a day is probably a small risk of damage. Disconnecting and reconnecting twice a day for 8-10 weeks increases the risk of damage and accidentally pulling on the urethera.

You could get in touch with the district nurses, but they don't always carry spares.

Added , I attach the night bag tube to a thigh strap around my ankle, it helps reduce  accidentally pulling on the joint. Make sure joints are tight, nothing worse than waking up in your own urine.

Thanks Chris

Edited by member 02 Oct 2021 at 20:19  | Reason: Not specified

Thank you for your replies . 

Gary is booked in for a CT scan tonight and a bone scan in Thursday .

some test results came back today and his C Reactive protein is 18.2mg/l on the 1st October and had been 3.8mg/l the day before . I’m trying not to goggle this as it really scares me .

any advice on why the jump .?

he managed the tube for the blood tests this morning so he’s in a lot better shape than he was a few days ago with the catheter .

Really sorry to read this Fiona. 

Hope that he can start the chemo soon and get his PSA under control and lowered. Is he on any HT?

The one thing I read quite a lot about this disease is that there seems so often something that can be done and many treatments to explore….and with the continuing research things change constantly.

I can understand it must have come as a real blow after everything he’s already been through, but I hope you’re both managing to stay positive.

Sending very best wishes x

Have they said about changing on to other HT if bicalutamide isn’t working? Hopefully they will soon to get control of it.

I can imagine it’s so difficult with a 4 year old, but I’m sure he/she is often what keeps you both going too, and what brings joy to most days.

Keep us posted and take care 

Thank you for your reply .

Gary had early chemo 6 years ago so it will be his second time around … 

I really hope it gives us some more time 

I’m worried how gary will cope with this chemo and how much more time it will gives us .

we had booked a trip to New York which will now be postponed until after chemo . 

, it seems so long ago now but he coped very well , the last few cycles I remember he got a few mouth sores but was never sick once .

Gary has only ever been sick twice in the time we’d  been together and that was from drinking too much red wine and cheese …. 🤢

I do hope so 

thank you Lyn 

Just a quick update on Gary ,

he had cycle 5 of docextaxal last week , his PSA has gone down to 88 , he had CT scan and MRI scan after cycle 3 . Liver met have minor improvement and bone show changes, more enhanced on MRI could be progression or reaction to treatment .  Consultant said to continue as PSA is lowering .  
I thought it would have been lower after 5 cycles . ??

consultant has now said 10 cycles could be on the cards if body can withstand the chemo ..

Has anyone been in this situation as I thinking is there another treatment available after chemo . 

Feeling a little bit lost on this long journey