Image: Online search (not my photo)
After 2 months without the NG tube for supplemental fluids, I’m coming to a point where I have to decide how long I can coast with the bare minimum fluid intake for my kidneys. There have only been a handful of days that I’ve gotten 2 liters in… most days it’s about 1500-1700 cc, so the bare minimum for where I’m at with stage 3b CKD (chronic kidney disease). To say I’m disappointed is a gross understatement. I want to be rid of the tube for good, and thought that I’d been making some progress, but truth is I have not.
SO, I’m not sure how to do this for a permanent ‘fix’. My thoughts are that if I continue to drink the 1500-1700 (or as much as I can get down- more if possible), I could just use the tube to supplement the balance, and gradually increase what I drink in smaller increments, so I don’t end up with more reflux and bloating. This also impacts food intake, but that will always be second to fluids in terms of importance. I also have been struggling with electrolytes some days (not all). I’m not supposed to limit sodium a lot, but if I notice more swelling in my ankles and feet, I am supposed to cut back some. But I still need ‘enough’, which for me, to avoid severe muscle cramping, that’s between 2500 and 3000 mg of sodium.
It’s been so nice not to be hooked up to a bag of fluids for hours each day, and to just be able to get up and do things without having to disconnect everything. It’s been great not having something hanging out of my face, making me look more ‘different’. It’s been great not feeling the tube. I don’t mind drinking water (usually with a bit of lime juice powder), and have tried various other things like sparkling unsweetened water, Spindrift, and the only flavor of Ollipop that I like (Crisp Apple). But volume tolerance is still a significant issue. That’s been the entire purpose of the tube- to bypass the volume issue by getting fluids in more slowly. And it worked, but who wants some stupid tube, or to be hooked up to something for 6-8 hours a day?
It’s been something that I’ve been thinking about for several weeks, and I can’t wait a lot longer to make a decision. I can’t risk more kidney damage. I won’t do dialysis, so I have to protect what I have. And yet, I don’t want the tube. But I also have to be logical. I’m discouraged. I know I’ve given this a fair trial period, and now, I need to do what is safer, but feels like failure. I’m enough of a freak with food, and having the tube just feels like more ‘defectiveness’. But my kidneys… if I know that I didn’t do something and the CKD gets worse, that would be really hard to deal with, knowing I had a way to help prevent it, but didn’t.
I’ve been having more frequent headaches with nausea, which could also be a fluid/electrolyte thing. I’m also exhausted. My blood pressure and heart rate are doing well ‘enough’, so that’s good- I haven’t entered dangerous territory again, and I need to do something before I get back to that point. My nursing knowledge needs to take the lead on this, and not my fear of fluid weight and not wanting to ‘fail’ this. Two months is the longest I’ve gone without the NG since July of 2022. I tried, and did better than I have with multiple previous attempts, but it’s not enough of a buffer to keep my kidneys protected. Bare minimums aren’t enough for days that I tolerate less by mouth. I know what I have to do. I just hate that I’m not doing better without it.
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