Is there a difference between PKD and CKD in terms of dietary restrictions/cautions?
I'm new to this site, so please excuse my ignorance... I have been asking my nephrologist, for over 18 months, if there are things I can do or avoid, that would decrease the damage to my polycystic kidneys. She has continually told me "no, not really". I used to drink a lot of soda (mostly Pepsi or Barq's rootbeer) which I gave up, because of the caffeine and whatever 'stuff' is in the dark pops that I knew anyone really should avoid. I then drank orange Crush (because it wasn't a black pop and does not contain caffeine), but also gave that up, thinking that it still wouldn't be anything I should be ingesting in any quantities. I drink mostly ice water now (sometimes with lemon, sometimes not...) with the occasional "splurge" of 7Up or orange juice (though I did go through a huge "orange juice jag", before reading somewhere that orange juice contains a lot of potassium - which I understood that I should avoid... Anyway, my kidney function is currently at about 17%, having dropped from about 25%, less than a year ago, so I'm questioning whether there really isn't anything I can do to slow the damage or maybe I'm just not doing the right things. Different people have told me about a renal diet and, of course, I have read some things about diet/nutrition on this site so my question is really whether I'm just "wishful thinking" that there are still actions I could take to decrease the rate, at which my kidneys (and their function) deteriorate, or are these diets and actions primarily necessary for end-stage kidney disease (on dialysis)? Since my nephrologist has continually told me that there really isn't anything I can do, I'm also questioning whether there are differences between CKD and PKD that would explain why some people get put on special diets etc. and see improvements in their function. Could this be explained by the fact that those people have CKD and I have PKD? Please enlighten me
CKD stands for Chronic Kidney Disease. This is an all-encompassing term that includes any condition which leads to deterioration of your renal system through four stages until end stage renal failure (stage 5,) at which point it becomes ESRD or End-Stage Renal Disease. My particular condition is IGA Nephropathy - which happens to be the most common cause of CKD. Polycystic Kidney Disease is yet another cause of CKD.
In terms of diet - you can mostly treat all causes of CKD in the same light. Root beer is generally fine for consumption by the way. What you're looking to avoid is phosphorus and caffeine. Drinks like Dr. Pepper, Mr. Pib, and all of the Cola's (Pepsi, Coke) tend to have significant quantities of phosphorus.
Avoid the trap of "eat this, but not that" as you'll end up finding that you're avoiding foods needlessly in some cases. For example, I was told by a dietician to not drink coconut milk, and she was basing that off of how much potassium coconut milk usually contains. However I found a brand that doesn't have much at all. Also I found an almond milk that contains such a small quantity of phosphorus that it's fine for a renal diet.
The best thing to do is to research what you eat and then track how much consumption you have. If you do this, you can eat some pretty tasty meals and you'll actually find things on the typical "no" list that are actually quite safe. Also learn to read the numbers on your Comprehensive Metabolic Panel - for example you can go too low on potassium, you can go too low on sodium, and you can go too low on phosphorus (though the last one is quite hard to go too low on.)
I've actually gone too low on sodium - when I limited my diet to 1600mg per day, I felt like crap, and it showed on my blood work because the sodium levels in my blood were low enough to be considered dangerous. Some people need higher amounts of sodium, and strangely most doctors aren't aware of this - they just see CKD and high blood pressure, and stick you on a low sodium diet. Sodium seems to have no impact on my blood pressure, so I don't do low sodium anymore (though I still limit it to 3 grams per day.)
Soda pop won't kill you by the way - just watch the calories, and stay away from any that contain phosphorus. Read the labels and look for ingredients that contain "phos" in them - phosphate, etc. Diet caffeine free root beer is quite safe for a kidney diet - though not all brands. Again, check the ingredients.
If you're big on fizzy drinks - try this: Get concentrated juice of your favorite kind (make sure it's 100% juice) and mix it with plain carbonated water (seltzer) instead of regular water.