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 

Sorry to read this with the rise in PSA. I can understand why it’s difficult to stay positive and I know I would feel the same. My husband always has the odd ache and pain and I worry that it’s PCa related, but in truth it probably isn’t. 

I’m sorry I’m not in a position to offer any advice but hopefully someone else will be able to. 

Wishing you all the very best x

Thank you Lyn,

Garys appointment with oncologist is on the 12th July so will asked , as I feel a chemo isn’t the best option now too . He has liver mets so unless they are reasons why he can’t take it .

will keep you posted on what happened and thank again for your advice 

I thought I would give an Update on Gary ,

we managed a lovely holiday and he celebrated his 55th birthday , 

He started Abi his PSA had  rose to 393 ( from 191) three weeks earlier. Five weeks in his PSA was 425 . Oncologist said that the rate of rise has slowed down so that’s good , is it working ?

he has become very tired and had trouble sleeping at night  so prescribed sleeping tablets . His sleeping is better now so stopped them after a week  Generally he has one good day and 4 bad days . 

his NE bone scan showed widespread bone mets throughout his axial skeleton and skull vault . He has a numb chin and lip the last few days so not sure if that is the effects of the bone infusion or something else.

I feel like he is Losing this battle . 

Just a little update on gary , he has been complaining of a sore back for a few weeks on Saturday he could hardly work ,phoned oncologist nurse who said symptoms didn’t seem like cord compression but in my heart / head knew something g wasn’t right .gary had oncologist appointment and while there  he had an MRI scan yesterday and by the time we got home the hospital had rang to say he needed to go to AandE immediately, I drove him across London as scan showed two spinal cord compressions. He’s now on a massive dose of steroids and awaiting I hope radiotherapy. 

 My poor gary seems to always be in that 1or 5 or 10 per cent of the worse things happening to him . I knew these days would come but I want him to be here forever 

Thank you , 

im trying my best for my four year old daughter , who doesn’t really know what is going on and lucky my brother has been able to take her for a couple of nights . I arrived at the hospital and he is going to have a CT scan . 

He had his tattoo marked tonight so radiotherapy tomorrow . . Not sure how long the spinal cord compression has been there as since Saturday he’s only had a sciatic style pain down one leg .toilet ok so hopefully fingers and toes crossed he is ok .

his psa was 398 and 5 weeks on Abi it went up to 430 and now 9 weeks 530 oncologist said it’s not going up as fast as before but definitely not coming down so I’m guessing that is failing ??? He started end of July so within 3 months .

Best of luck for today, hope the RT goes well for Gary x

Gary called me today and said he had no feeling in his legs and when asked to move them he couldn’t , his bum is numb too .

He had two sessions of radiotherapy to whole spine (Thursday and Friday ) and it looks like it’s made it worse ? Am I thinking radiotherphy is not working or is it to early to tell that this happened before it gets better .

Thank you , I’m trying to keep it together for my 4 year old ,who doesn’t really understand and don’t really have any extended family apart from my brother who went on holiday yesterday for a week . I have some very good friends 

I spoke to gary last night and he has urine retention so have fitted a Catheter, 

Gary has skull mets , they showed on a scan in June , I didn’t tell him I knew as I wanted to carry on as normal . They have repeated a CT head scan on Thursday so I’m sure we will find results in the next few days . 

I will try and seek some help , I left my jacket on the tube on Thursday , didn’t realise until I got to the hospital , stupid tired and stressed .