Thirsty PALS

[Tomswife]

PALS Tom had his GI tube placed Nov 23, 2022. We use the tube to keep him hydrated. He can still take pills via thickened water. Now that he has started Relyvrio, that medicine will always be via the tube.
And that brings us to the topic of thirst. My PALS is thirsty. What makes us feel thirsty? If you are being hydrated via a tube that is bypassing the normal route can you still feel thirsty? And, There is so much sodium in Relyvrio! How does all this sodium impact how the body needs and uses water?
I read a few white papers (sort of understanding parts). Our bodies use complex mechanisms to prompt us to drink and signal us to stop drinking. This prompting and stopping is being controlled by me - deciding when and how much water.

One simple thing I learned is that if a person can just hold liquid in their mouth, it can give a sense of having drunk a liquid.

Since my knowledge is limited (and ability to understand) i will reach out to the specialty pharmacy to see if they have a recommendation on the minimum amount of water per day on Relyvrio. And....does excessive hydration flush the sodium filled Relyvrio out of the body?

If you search on the word "thirst" it is in many many posts. Perhaps this topic is of interest to others.

 

[Tomswife]

I called and spoke with Relyvrio pharmacist. Each packet has 464mg "sodium". There is no recommendation on daily water intake for patients on Relyvrio. The pharmacist did not think I should concern myself about too much water flushing the drug out.

 

[affected]

You can still feel thirsty and mouth hygiene is always important. If he has something he prefers drinking, you can add thickener to it and let him sip on it a times when thirsty. You can also have a pharmicist or doctor check inside his mouth to be sure there isn't any sign of infections, bacterial or fungal that could around.
I hope you find a balance.

 

[KimT]

Having a dry mouth can mimic thirst. I take some meds and I'm a big water drinker but the meds make my mouth dry and I'm "thirsty."

Is he losing water from sweating or from a fever? How much water intake does he have?

 

[Tomswife]

I think he gets roughly 30 oz water perday. Not including thick juices, like Bolthouse.
I noticed that many posts here refer to thirst.
I am going to spread out his Peg flushes during the day so the hydration is more even.
But wondering if thirst is side effect of Peg.

 

[affected]

Not a side effect of peg that I can remember ever reading. But you said a lot of posts refer to it?
You could easily give him more water than that.

 

[KimT]

Is his urine output pale yellow or darker?

 

[lgelb]

Having a feeding tube doesn't change the fact that thirst often signals a need for fluid. So I would give him more. Unless he has severe kidney impairment or heart failure, it's unlikely to be a bad thing. I would also look at his sodium intake beyond Relyvrio; commercial formulas can contain a lot.

 

[Tomswife]

Darker urine. But that can be the multi vitamin.
I have added a third hydration.
But...there's always a catch. His ability to stand is weak. I have to help him.
I will give him urinal to use at night.

 

[MupstateNY]

You could see what happens to the urine color after a couple days without the multivitamin if you want to be scientific!

A few months ago I had a conversation with my primary about water intake. I felt dehydrated with some cognitive dulling. He convinced me to drink more water. Now I drink a LOT and I feel better in that regard.

Your urinal idea sounds very good.

I googled and found:

"About 15.5 cups (3.7 liters) of fluids a day for men"

"In general, you should try to drink between half an ounce and an ounce of water for each pound you weigh, every day”

You could ask for an order for a blood test and that might give you some helpful information.

I think there are ways of checking for dehydration where you press on something. Google offered me: "Take the skin on your knuckles and pinch it. If the skin goes down easily, then you are hydrated. If it takes a long time to go down, clearly you are dehydrated."

My speech pathologist noticed a dry mouth and tongue, before I started Riluzole or Radicava. Also I have more trouble speaking when my mouth feels dry. So, I've always got a water bottle handy so I can sip frequently. That really helps my speech.

 

[lgelb]

Better to hold a urinal for him in a wheelchair , recliner, or hospital bed than for him to become dehydrated.

 

[affected]

Yes you can hold the urinal for him, or position him with it while sitting then leave him for privacy.
And at night there are the condom catheters that can allow him to sleep all night.
I honestly would say that I often see PALS allowing themselves to dehydrate a bit due to it being harder to transfer or get to a toilet. Honestly, staying hydrated will really make more difference for his QOL, as will finding ways to conserve energy emptying the bladder.

 

[lgelb]

Don't rely on Google for the amount of hydration. 3.7 liters/day for guys is extreme unless you're doing a lot more physically than most PALS. As noted, skin, urine, how you feel, your pulse and BP, temperature, mucus membranes, lots of ways to discern if you are adequately hydrated.

ALS affects fluid balance as well as metabolism because you are not moving, not changing position as much, etc. That's also where edema comes from. But there is a lot of territory between potential dehydration and fluid overload.

 

[Tomswife]

Lgelb and affected. Thank you very much. Very helpful. ALS requires we have an understanding of the human body and all its functions. I also realized that caring for him my water consumption has gone way down. So i need to hydrate also.