Hi
My mum had a severe stroke beginning of May.
After many setbacks she seemed medically well to be moved to a rehab hospital.
Unfortunately she suffered from cardiomyopathy and is on water tablets.
Taking these affects her sodium levels so they take her off the water tablets to try to balance the levels.
Every time they stop the water tablets she starts to deteriorate.
So it’s an ongoing process of trying to find a balance.
I am wondering if there will ever be a balance or anyone has any experience with this.
We have asked time and time again at the hospital but no one ever really comes up with more than a vague explanation ( which tbh isn’t more than you get from google !! )
I hope you are all doing well and thank you in advance
Hello Nicola - Has your Mum’s dietician been involved?
When my Mum’s sodium levels dropped, the hospital initially balanced them using IV drip and electrolyte solutions but for ongoing, it was Mum’s community dietician who came up with a solution. They had already encountered similar issues with other patients in their care.
No not seen a dietician she has a peg and is on 18 hour feeding.
What did they actually give your mum or how did they remedy the problem
As soon as she stops the water tablets she deteriorates rapidly.
We know it’s a balancing act with the sodium levels but it’s constant week in week out.
She makes progress off the water tablets and back we go.
Hi Nicola - happy to discuss as we’ve had a nightmare with a few things in Mum’s care plan and the PEG is one of them. The “good” news is that despite all the hurdles, Mum has survived the stroke and six years later she is doing quite nicely, thank you. She is in her mid-90s.
Not sure if you mentioned how old your Mum is as this can make a different as to how the healthcare professionals plan their care.
Stroke was at beginning of May, so that is a relatively short time - Mum had nothing to “eat” for the first month or so and then she was given some feed by NG (temporary for 1 month) and then she had the PEG fitted.
Like your Mum she was on this horrendous 18 + hour feeding cycle.
Other than the stroke she had no other medical conditions but she was put on BP lowing meds which we later found was the likely cause of the sodium dropping to below minimum.
So first thing was to stop BP meds - not sure if that is an option for your Mum but your consultant would have to look at her overall condition.
We then changed feeding from continuous to Bolus (mimicking normal eating patterns) and she was on a large amount of fluid (water) to keep her hydrated and to to keep the PEG tube clear (stop it from blocking). This high fluid intake may also have washed away some of the sodium.
The dietician asked us to add half a teaspoon of salt in her drinking water and this seemed to keep her sodium level in the “normal” band.
I am afraid I don’t know what the water tablets are for and what role they play in your Mum’s health and care plan.
