One of the most difficult parts of ESRD is food. What the hell can Chuck eat? Late last summer before we were living together he was referred to a “renal diet educator”. It wasn’t a one-on-one meeting, it was a class so I didn’t go with him. We’d been to a VA class before—living with chronic illness— and it was disappointing at best, demeaning at worst, so he said, ‘don’t waste your time.’
At the renal diet education class Chuck basically learned one thing: Don’t use salt or salt substitute. Wait a minute! His primary care physician, diagnosing his severe edema a result of his using too much salt, had advised him to use No Salt, a salt substitute that is basically potassium. Of course potassium—we would learn later from ”that could kill you”Indian Doctor— is one of the worst things for somebody with compromised kidney function. Yet, in order to follow the doctors orders he’d been using it and I got a big box of it to use when he spent the weekends here. He sent me an email after the class saying, “I think they’re preparing me for dialysis.” I didn’t think that couldn’t possibly be true because it seems like somebody would have said something about it before referring him to the class.
So, without any real specific guidance except a booklet given to him by the renal diet educator we started trying to figure out what he could eat.
All the things Chuck was supposed eat as a diabetic—whole grains, lean protein, beans, vegetables, you know healthy stuff—he’s not NOT supposed to eat on the end stage renal diet because they’re all loaded with potassium and phosphorus. I mean realistically, it looks like all he can eat is white bread, white rice, bell peppers and zucchini. To make matters worse, his diet is even further restricted because of the warfarin he takes because of his heart valve. So, all kinds of foods that would be acceptable on the ESRD diet are off limits because of warfarin. And to really compound the problem, Chuck has developed an insatiable appetite. This is a new development. As long as I’d known him he’d had no appetite. If he didn’t smoke some pot before a meal he couldn’t eat at all. Many beautifully prepared restaurant meals would go into a to-go box because of this. Then, I discovered an article in the Journal of the American Society of Nephrology, Bicarbonate Supplementation Slows Progression of CKD and Improves Nutritional Status,[http://jasn.asnjournals.org/content/20/9/2075.short]. Well, since the VA wasn’t doing much about slowing the progression of Chuck’s renal failure seems like the bicarb supplement was worth a shot. Obviously, it didn’t slow the progression but what it did do was turn on his appetite. A good thing too, because even as much as he now eats, Chuck is still losing weight.
I got the end stage renal disease app for my phone—yeah, there’s an app for that! It’s really a great app. In fact, it provides more guidance than the booklet from the VA. [http://www.kidneydiet.com/] . It really is a good app because it lists everything, even fast-food crap like Burger King. It takes me hours to shop because I constantly consult the list to check for sodium, potassium and phosphorous levels of different foods with the app.
After a month of the ESRD diet Chuck decides it’s a quality of life issue to pick and choose his dietary battles. He does severely restrict sodium. (While I unload the salt shaker on the meals I’ve prepared) He does avoid the vegetables he loves most like tomatoes. But he won’t give up the huge bowls of high-phosphorous oatmeal he enjoys. He eats more protein than he’s supposed to. And the less than one liter of fluid (“from all sources including food” according to Indian Doctor). Totally ignores. He loves tea and we have about 30 different boxes in the cupboard. “How can I drink less than a liter of fluid a day?” he asked me in frustration when I suggest maybe he’s drinking waaayyy to much liquid. “I’m diabetic. I get raging thirst.”
I try to make peace with this. It’s his decision. I know I couldn’t live within the strict dietary restrictions he’s been given. I try to avoid reminding him, “you’re not supposed to eat that.” I just do what I can to develop tasty meals within the strict parameters with only trace amounts of the many forbidden foods, but it’s a huge challenge. I serve him two Tums before his oatmeal or any meal with a little cheese to hopefully bind the phosphorous. I’ve read that end stage renal patients are supposed to be on a phosphorous binder, but the VA won’t prescribe it.
We found a website that has recipes [http://www.davita.com/recipes/] but they are not for specifically for diabetics or people on warfarin, so that eliminates a lot of potentially tasty meals. Still, Chuck found a recipe there and made a tasty salmon chowder that was based on CoffeMate —and jeez, I never would have thought I’d eat something fake like that. You do what you have to do….except use Splenda.
I’ve always been a recipe collector so now I try to find “modified” recipes for people with gluten issues because they are lower in carbs. I an angel food cake that eliminates sugar and most carbs.
What a disaster.
The recipe called for xanthan and guar gum to help create the volume eliminated by the sugar which the recipe
replaced with Splenda. I used stevia instead of Splenda. [Splenda was originally developed as a pesticide and, while the ads say it's made from sugar, they don't say the hydroxyl groups in the molecule are replaced with chlorine]. Well, I couldn’t find the guar gum and the xanthan gum was really expensive but I figured maybe a good investment for future use. Reading about the chemical properties of xanthan gum it seemed like just doubling it would suffice for not having guar gum. The result was an interesting chemistry experiment. It came out of the oven looking like a gorgeous, golden angel food cake. However, within minutes it began to deflate. We watched in fascination as it lost 90% of its volume in about, oh, maybe 2 minutes.
Oh well, we keep trying….