u/TubieCoin

I’ve been on dialysis since I was 22, and I’m 28 now. Sometimes I genuinely sit back and wonder where those years even went.

Sometimes the hardest part of dialysis isn’t even the treatment itself. It’s the grief for the life you didn’t fully live when your body still allowed you to.

I spent so many years just studying, staying home, avoiding risks, not socializing much, not traveling, not even trying simple things people take for granted — random foods, drinks, long outings, freedom.

Now I can’t even drink water freely.

And some days I sit there thinking: if I ever get my life back, even for just a year or two, I would live completely differently. I’d travel. Try everything. Meet people. Stop treating normal days like they’ll last forever.

The weird thing is… “normal life” itself feels nostalgic to me now.

Even something as ordinary as the feeling of a full bladder or needing to pee feels like a memory from another lifetime.

So I been on dialysis for the last 6 years, and I’m honestly curious if anyone else does this or if I just kinda created my own thing 😅

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Around 4 years ago I was really struggling with my dry weight and fluid gains. You all probably know how frustrating that can get… trying to not drink too much, feeling heavy, short of breath sometimes, and just constantly thinking about fluid.

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Then one day it just kinda clicked in my head… if sweating removes water, why not actually use that?

So I ended up getting a dry heat sauna made, and ever since then on my non dialysis days I use exercise + sauna to sweat out and help manage extra fluid.

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I’m not saying it replaces dialysis obviously, and I still have to be careful, but for me it honestly felt like one of the first things that gave me atleast some sense of control instead of just waiting for treatment.

Some days it helps me feel lighter, less puffy, and mentally better too because it feels like I’m actually doing something.

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I know this probably sounds random, but after 6 years on dialysis you start thinking outside the box sometimes just to make life easier.

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So now I’m wondering… am I the only one?

Or am I just out here surviving on dialysis with my homemade sauna strategy 😂

Would honestly love to know if anyone else has tried something similar.

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I’ve been on dialysis for the last 6 years, and honestly fluid control has probably been one of the biggest daily mental battles. The thirst, dry mouth, weight gain, and constant pressure of knowing every sip matters can get exhausting.

For a long time, one of the ways I’ve personally tried to help manage fluids is by sweating in a sauna, but I know that’s not the only way—and probably not always the best or easiest option either.

So I wanted to ask people who are actually living this, What genuinely helps you control fluids better?

Hey everyone,

Being on dialysis has honestly made food feel way more complicated than it used to. Some days my appetite is trash, but I’m also trying really hard not to lose more weight or muscle… which feels like a full-time job by itself.

Lately, this shake has been one of the few things keeping me consistent, so I thought I’d share it here in case it helps someone else — and also because I’d genuinely love advice from people who’ve been figuring this out longer than I have.

My usual shake:

33g whey protein

15g olive oil

33g oats

10g chia seeds

10g psyllium husk

Water (depending on my fluid limit)

I know it’s not perfect, and I do think about phosphorus/potassium a lot (probably too much 😅), especially with the whey + oats + chia. I take binders, but I’m still always second-guessing whether I’m helping myself or accidentally making things harder.

For me, it’s mostly been:

Easy calories

Protein when eating feels exhausting

Something quick on low-energy days

I guess I’m just trying to find that balance between “keep my body going” and “don’t overload my labs.”

If anyone has suggestions, I’d seriously appreciate them:

Better protein powder options?

Lower phosphorus swaps?

Anyone doing egg white protein instead?

Anything here you’d personally change?

Dialysis already takes enough from us — if I can at least make nutrition a little easier, I’ll take that win.

Hope this maybe helps someone, too.