I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Low sodium 120. Hyponatremia?

Email this conversation Print this conversation

User

Posted 18 Oct 2018 at 18:03

I would trust the GP's instincts over the onco - it is a big call for a medical professional to call a halt on the only active treatment left so they may continue with the abiraterone for as long as he can tolerate it. But I think that the referral to palliative care was already in the pipeline - did you previously post that you have an appointment in November with them? They may not be able to do anything for bleeding but by golly, they could be a source of information and emotional support to you.

Keep in mind that a small amount of blood can look horrific when diluted in urine; if he isn't weakened and / or anaemic then he is presumably not losing as much blood as you imagine.

What is his PSA doing?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2018 at 22:21

Hi Lynn,

No psa given, I think we were so focused on his sodium, nurse included, that it didn't cross our minds.

Oncology nurse said at the first treatment cycle that it can take 3 cycles before any downward trend is seen. I'll ask tomorrow when they ring me.

Yes, a little goes a long way in the urine, what's so worrying is that every time oh stands he passes a clot and urinates. He's exhausted, it's one more stress on top of what has been an extremely exhausting experience for him. He's decided to stay at home rather than risk the Welsh a&e and wait for the outcome of the MDT . We were supposed to be going away for half term with the kids, my brother and his family and my mum. But Wales is 5 hours from home. Right up until this evening oh was adamant we were still going in the morning but I think he's hoping they might be able to do something to reduce the bleeding. The kids are still going with my mum which gives me and oh some space and time.

We've been under the palliative team since June but not really had much to do with them yet. I have rung a couple of times for advice and they have pointed me in the right direction. I've spoken to them today and they also felt they couldn't really contribute anything until there was more information. They recommended I take nigel back to hospital if the bleeding hadn't stopped.

User

Posted 18 Oct 2018 at 22:23

We have a review booked for November with palliative care team. I don't know what this entails, I can ask about this tomorrow as well.x

User

Posted 20 Oct 2018 at 17:20

We made it to Newgale, stopping every 50 mins for oh to walk about and use a loo. The services on the m4 are very nice....but at 4.30 am oh woke me to say it was like last week and he wasn't passing urine any more. I rang for an ambulance to take us to a&e and they catheterised him there.
Good news, sodium up to 125, bad news oh has a catheter., good news, we've had a nice day as a family, the sun is shining and the scenery is stunning.
Oh is happy that the catheter has bypassed the need to use the loo every 5 mins but it's sore.
I rang the palliative care team for advice on how to manage it, they were very helpful and talked me through various scenarios.
The doctor at a&e wanted to take it out on Tuesday but oh doesn't want to. Care team said he doesn't have to but he needs to insist on it at a&e and perhaps they will show me how to irrigate it when the blood clots get stuck in the tubes.
My poor oh, he's really been through the mill this last week, I hope this week is better.

User

Posted 21 Oct 2018 at 16:00

Back to a&e this morning at 7am for a flush of the catheter as blocked with a clot. The lovely a&e Doctor who fitted it Saturday morning is on 7 night rota, we quite possibly will be seeing him again this week!
He showed me how to use the solution to flush the catheter and has given me 2 bottles to take away. I'm really hoping I won't need to do it.
Oh is happy for me to try if I have to, I'm amazed at his confidence in me.....
He's made it out of bed twice today, but is reluctant to get up and move about as his bladder goes into spasm.
We will be asking for some drugs to relieve this when we go back on Tuesday.

User

Posted 22 Oct 2018 at 20:38

After 2 days of antibiotics his urine is clear!
A&e Doctor said he had an infection and that if trimethropin didn't work then he would give something stronger.
Oh is like a different person, apart from the bladder spasms.
The confusion, apathy, reluctance to even get out of bed has gone.
I really thought we were having a crisis and this may be a step further down the road towards non-treatment and pain relief only.
I'm angry with our own hospital for stopping the antibiotics too early and for his care team for not checking whether the uti was back.
Another lesson learnt.
Oh is very happy with the catheter in terms of unbroken sleep. I think we had 5 hours last night, the longest stretch of sleep for months and he was looking forward to sleeping tonight with no interruption.
I don't think I've ever looked at urine with such joy as this evening when we had to shine a light on the tube to check it was there it was so clear!
Xx

User

Posted 23 Oct 2018 at 02:53

So glad it turned out to be a UTI, they can be really bad and cause confusion. The one my OH had that the GP missed had no signs except he was talking weirdly, he sounded believable to anyone who did not know him, but he was saying really strange things for him! Thankfully he had a urine flow test at the hospital and the nurse said he had an infection, i could have thrown my arms round her in relief as the GP had tested his urine three hours earlier and insisted there was nothing wrong! I was even begining to wonder if he had hit his head and not told me, it was that serious, almost like he had a head injury.

Hope you enjoy the remainder of your holiday, antibiotics really are a wonder drug when they work!

I have done more things in the past two years than i ever thought i was capable of, i am sure if it had come to flushing the catheter you would have coped! It is definitely a steep learning curve, especially if you are not used to dealing with hospitals, i had never been in my local hospital until two years ago, i recognise the staff now!

Make sure he takes the full course of antibiotics, he may need an extended course to make sure he is completely clear of infection.

Hope you get good weather and are able to enjoy the rest of your break away, at least you know the hospital is a good one!

PS Don't let him drink any beetroot juice or you will think the blood is back!

User

Posted 23 Oct 2018 at 06:40

Thank you Kita,

Your right, I certainly didn't know what I am capable of in this situation.

The bladder spasms plus the movicol meant for an "explosive" event this morning, before the first cup of coffee of the day!

Thank goodness for Tena extra pants. They caught it all and I'd cleaned him up in under 5 minutes. Oh was embarrassed of course but I hope I made him feel that this is just one of those things that you do for one another when needs must.

I agree with the antibiotics, they were going to give him 21 days of these last week but didn't after his "bloods" showed he wasn't fighting an infection. I agree with you Kita, I think they missed it as it hid for a couple of days.

1ltr of lovely wee produced overnight and several hours unbroken sleep. Sun's just coming up. Oh the most "normal" he's been for ages, I wonder how long he's had an infection for!

User

Posted 23 Oct 2018 at 14:16

https://www.alzheimersreadingroom.com/2017/01/alzheimers-health-an-undetected-urinary-tract-infection-can-kill-an-alzheimers-patient.html?m=1

The above talks about UTI in alzheimers patients, but it also explains how easy it is to miss, especially when there are other things going on. I once read that something like 80% of people with dementia in care homes have an undetected UTI, which is really scary. The carers just put the confusion down to the dementia. As you have found a UTI can have many symptoms, you are lucky in a way that there was blood in the urine as that is not always the case, my OH did not have it, the only symptoms were tiredness and a bit of confusion. I think if that nurse had not found it on the Friday afternoon I would have ended up in a&e with him on the Sunday. UTI's can take over very quickly and can be life threatening within days. Caught late and you have to be given introvenous antibiotics. Convincing someone who thinks they are fine but has confusion, to go to the hospital/doctors is not easy!

Hope you enjoy the rest of your holiday and get the chance to relax!

User

Posted 23 Oct 2018 at 15:59

We wouldn't have known that his sodium was so low if he hadn't been bleeding, also life threatening.

He had intravenous antibiotics last weekend because a&e nurse said he had a uti. Come Tuesday, doctors said he hadn't so stopped the 21 days of trimethropin he had been prescribed on the Monday.

He's definitely feeling much better but he is very poorly anyway. Anything that can alleviate the additional problems that come with this disease need knowledge.

I really appreciate everyone's input as personal experience such as yours Kita is invaluable to those supporting their partner.

I won't take for granted that oh is deteriorating next time, and I will definitely ring several teams for opinions before helping oh decide what he wants to do next. (Regarding the catheter )

User

Posted 24 Oct 2018 at 15:55

Kentish, bear in mind that some antibiotics are not available in tablet form and have to be given via i/v drip. It isn't necessarily the case that having the drip implies that you may be at death's door! It depends upon the type of infection. Also, the i/v drip is faster acting and that may be a factor in the doctor's mind.

Keep smiling!

AC

User

Posted 24 Oct 2018 at 18:02

Auld Cother, I don't even know what the antibiotics were last week. 2x tubes of something pushed through his canula . The drip was for sodium, that was at a dangerous level!

We've been back to see the lovely Doctor this morning who was happy to leave the catheter in at oh's request.

Oh's urine culture was free from infection so only the 7 days of antibiotics to take. No blood in urine during the night but blood in the bag after bowel opening in the morning, followed by some awful spasms that require oh to lie down for some time.

Rang urology nurse to say it's staying in and she said removal (if necessary ) will be arranged at urology appointment on Tuesday.

User

Posted 26 Oct 2018 at 22:16

And we're back from Wales. I am so relieved to be home. Oh is really suffering with the spasms and the blood is back....
How much is too much?
It's very very dark, I've had a Google but I can't find a scale to judge it by. I might pop into the hospice tomorrow , I am very lucky it's only 5 minutes away and ask them...
Changing the bags and cleaning oh up for bed tonight, I feel very much in at the deep end..

User

Posted 27 Oct 2018 at 22:43

So the bleeding appears to be slowing again. Urine this evening looking like wee with blood in it as opposed to just a bag of blood!

A very quiet day, lots of rest, oh is not inclined to get up and do anything for himself...mostly because the spasms and penis pain are really, really horrible.

Hospice team recommended Instillagel, I've been and purchased several from the chemists but will ask for these to be added to his prescription. One was enough to be able to get washed and changed.

The nurse said that it's hurting this much because it's such a large catheter tube to allow for clots, smaller ones would keep getting blocked.

Oh is looking rough, pain is debilitating, I hope urologyist will have a management plan.

User

Posted 27 Oct 2018 at 23:45

I am so sorry that you are having such a dreadful time - have messaged one of the members that has been in a similar situation so am hopeful she will be along with any advice she might have.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Oct 2018 at 23:10

Outcome of urology appointment :

Prescribed Solifenacin (Vesicare), one a day.

Oh was given 3 options, keep the catheter and try medication to stop the spasms, have a cystoscopy and they would try to cauterise bleed, could work for a couple of months, might not and may cause incontinence and the third option was to have a "scrape" of the prostate to reduce it and stop the bleeding but that also may only work for a short time and carries a high risk of incontinence as well.

I have taken a dislike to the urologist, this may just be transferred anger but he said"you have advanced cancer..." at least 4 times in the 15 minutes we were there. There's no need to remind oh, he's fully aware given the last two weeks poorliness and wasn't expecting a miracle, what we were expecting was an offer of symptom relief. I came away desperately hoping that the medication will work and that I'll never have to see that man again.
Poor oh was in tears on the way home, scared and upset as he felt that the urologist was too hurried and was rushing him to make decision there and then about something that's really important.

We did finally meet oh's specialist nurse who came into the appointment with us and there was a second nurse from the team there too. Considering oh has been under their care and this is the first time in 18 months we have met anyone from the team face to face you could say we were a little thrown by it.
I still get the feeling when we are in appointments or I am talking to people on the phone that they think we know what is happening, it's like it is assumed we are prepared or have a greater understanding of what's happening than we actally do. So when I ask a question, such as "how much blood in the bag is too much?" A sensible question I thought, some days it's been almost as thick as blood, this produced a chuckle from the urologist and "oh there can't be too much, any bleeding will be fine, dont worry" maybe it's just me but that wasn't very reassuring.
When the nurse asked who was keeping an eye on oh's sodium (this was agreed in the MDT to be the oncologist) and I replied no-one has since we went to a&e, this also did not fill me with confidence, I had thought that they might want a blood test for oh for today's meeting so I asked the gp yesterday to do one. All but the sodium results were back....sods bloody law. The nurse will keep checking as I'm a bit worried it may have fallen again.
Oh has has just summed it up "well that was a bit of a bad day"

As oh wasn't well enough to leave the house yesterday the community Nurse came to the house to take his blood.
While we were at the hospital today the district nurse rang the house to make an appointment to see oh.
I will sort that out tomorrow and ask for some catheter support too as I really only know the basics but have been left to get on with it. I'm the kind of person that needs reassurance that I'm not doing it wrong and maybe making things worse.

Fingers crossed the Solifenacin (Vesicare) works.
I wonder how long before it takes effect?

User

Posted 30 Oct 2018 at 23:30

Sorry that was a bit of a rant, pent up emotion and nowhere to let it out, came in from the hospital to "when are we having dinner?", "mum, have you seen this youtube/snapchat/instagram video, it's hilarious?" "At the weekend can I....."
Nothing like kids to keep you going but sometimes I need a bit of space to mull things over or stamp my feet. .

Thank you for being here

Xx

User

Posted 31 Oct 2018 at 02:07

Kentish, it isn't supposed to be this difficult. Could you phone the specialist nurse and talk it through again - perhaps pretend that you can't quite remember what was said or simply tell her what you have told us, that there is an assumption you know what is going on when in fact, there are so many teams involved everyone might be assuming that someone else has explained it all to you. I would also be pushing to clarify the role of the hospice team / palliative care in your OH's care planning - you need more than just us.

There is a (virtual) comfort blanket that does the rounds here - I can't remember who had it last, it might have been Julie but it is on its way through to you now.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Oct 2018 at 07:56

Thanks Lynn,

I didn't think it should be this hard either. Oh is scared at what's happening to him, I'll ring the nurse today and try and explain that.

I think I'm lost as to how his care plan is being managed, I'll ask that too.

I appreciate the blanket, and the advice it's definitely a comfort.xx

User

Posted 31 Oct 2018 at 17:29

I rang the urology nurse team to ask:

How long for the bladder spasms to improve on this medication = hopefully see a benefit in around 2 weeks.

Do I ask the district nurse when she rings to change the catheter or does that come from the urology teams letter to gp: The urology team will send an electronic letter but I should request it when making an appointment with them.

Who looks after Nigels care plan: The hospice team.

So, some answers, hopefully definitive ones.

Sodium level back, fallen again to 120. The urology nurse is going to pass this to onco on Friday to ask what his plan is.

However....because I'd asked the gp to check his sodium the results also went to them, this prompted a request to go to the surgery for a review....hurrah!

The gp (not the one we saw 2 weeks ago ) was shocked by Nigel's appearance, how pale , tired and ill he looks and asked if anyone was monitoring his sodium level. WTF! I controlled my bubbling indignation and rage and relayed the events of the last few weeks.

Gp looked for any letters or communication from onco that requested sodium to be monitored, none. So gp wouldn't monitor it as they don't get the hospital results automatically and unless requested wouldn't look at them and monitor. Bloody shambles..

Gp is concerned and debated whether to dispatch oh off to hospital but instead we agreed on blood test tomorrow to see if sodium has fallen further since Monday.

Gp wrote an email to onco asking what his plan is and what parameters the results should be within, what levels would they want to admit him and her opinion of Nigel as he is right now.

I feel the calmest I have felt in months, the community Nurse has rung and booked oh for a catheter change and to meet us and bring an "emergency kit" which is hopefully not going to be used in the near future.

I finally feel like oh is being "cared" for, it's taken a lot to get to here and quite a bit should have been someone else's responsibility but we can move on into making oh's quality of life better.

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.