Three weeks ago, I removed the NG tube that has been in my nose for the last 4 years. It’s been a little nerve-wracking because I don’t do well with ‘volume’, so eating AND drinking without the tube for back-up was a bit daunting, but I wanted to try again. I’ve done this about 10 times in the last 4 years, and never lasted longer than a week. The reason I had it in at all started with a bladder infection that I had to have enough fluids on board to fight, and then it got ‘stuck’ as I started eating again. I just couldn’t handle the bloating of food and fluids. I was a RN for 35 years, working for 20- DO NOT try to insert your own tubes if you haven’t been trained to do so, or know how to maintain them (changing them from one nostril to the other at regular intervals, checking placement, etc). Lack of training could kill you.
With chronic kidney disease (CKD), fluid intake is critical to avoid any further decline in functioning. Most doctors have assumed that I have kidney disease because of being diabetic, but my most recent nephrologist (and med school professor) told me that without proteinuria (protein in urine) that I’ve never had, and with a 5 decade history of food and fluid restriction, I’ve damaged my kidneys by not giving them enough fluid (and therefore blood pressure) to allow them to work properly. That was hard to hear, but also necessary. My blood sugars have been well controlled after I was diagnosed with diabetes in 1995, so it was weird to me that my kidneys had fried when I’d been so careful to keep my A1C (average of 3 months of blood sugars) well below 7, and usually below 6 until I had leukemia and the chemo hell of that that was a blood sugar nightmare. But even after that I was able to stay in the low 6s and sometimes upper 5s. It was like I’d been “good” for nothing, but my nephrologist told me that it wasn’t because of diabetes. I’d basically been starving my kidneys of fluid as I restricted what I ate, and without much of a thirst mechanism, didn’t drink enough… for decades. My kidneys are at about %35 functioning now. At my age, they should be at least %60 (function normally declines somewhat with age).
Anyway, I’ve been doing OK. I’m not up to 2 liters/day, but have consistently gotten in at least 1600 cc/day, which is at the low end of acceptable. I haven’t been able to do that in four years, so I’m pleased, but also know I have more work to do. This has impacted how much I can eat, though I’m not nearly as concerned about that (other than carbs) as I am the amount of fluids I get in. I have consumed too few carbs a couple of times in the last 5 years that led to acute kidney injury/acute kidney failure, so I also have to make sure I get in enough carbs to avoid muscle breakdown that my kidneys have to deal with, making their job harder. And potentially lethal for me. I won’t do dialysis (seen too many people suffer through it, including my grandmother), so keeping my kidneys functioning is something that weighs heavily, as I try to weigh less. With diabetes, CKD, and gout, food options and management are a non-stop pain in the butt.
At least one thing is starting to stabilize, freeing up the expense of tubes and feeding bags (all out of pocket as no MD would help me with supplies via prescription; I’m guessing fat bias), as well as not being ‘tied’ to something for 6-8 hours a day. For the first 1 1/2 years, I used a pump, but after that, used gravity bags. I’ve found some sparkling fruit flavored waters that I like, so that’s been helpful (#Spindrift and #LaCroix are my current favorites). I’m learning how to spread out how much I drink so I don’t get bloated, as well as not overloading with fluids before I eat, or that ends up a predictable failure. I’m fortunate that I also like plain water, or #LiquidIV, so I’m finding enough options to keep me interested and not miserably ‘full’ from fluids.
Food is still a problem. Expense wise, it’s gotten very daunting, but I’ve been using components of various emergency foods (MREs, US and foreign, freeze-dried fruits, and some shelf-stable options) to keep things interesting and affordable since they’re already here. Not having to cook much in the summer is also a big consideration. I like budget foods, but things like ramen have preservatives (TBHQ and BHA for starters) which are not good for kidneys (or much else). The seasoning packets can also have sketchy ingredients, so I’m finding ways to have things that I like within my budget, and just come up with my own ‘safe’ seasonings. Artificial sweeteners can cause DNA damage, so even though I’m diabetic I won’t consume those. There are ways to work around sweeteners by getting things plain and then using either allulose, erythritol, and/or a bit of stevia. The more natural the better when it comes to what kidneys have to filter- and this applies to people who don’t have kidney disease. Why make them work harder? Once they’re chronically damaged, that’s it. The only hope is to avoid more damage.
I’m pleased overall that I haven’t had to put the tube back in. I’ve got them here for emergencies (like infections when drinking enough is difficult with appetite and interest fading badly when I’m sick), and knowing that there is a safety net helps me feel less intense pressure, even though the goal is always to avoid the tube when I can. It’s fluid insurance. But for now, I’m doing OK with the old-fashioned way… simply drinking, which isn’t always so simple. I’m thankful that I’ve done it ‘on my own’ for 3 weeks, and don’t plan to reinsert it anytime soon.
