I was once given a "renal diet" by a nutritionist who knew nothing or very little about PKD, just generalized as do many in the field, that all kidney diseases are the same. when I read the diet I was in tears.
I took it to my daughter who tore it up. she is also a nutritionalist. after noting the diet was from 1979 she gave me a more realistic, up to date diet to follow, that actually had food in it, more than 4 slices of white bread and 1/2 cup of fruit and veggies daily.
the first rule of thumb is, only change your diet based on your lab results. if your labs are relatively normal you don't need to reduce potassium, phosphorous, protein. I do recommend keeping sodium low unless you are deficient.
mouth sores in the corners, I was once told, is a sign of a septic condition (which sounds really awful). they are uncomfortable and look bad. a weakened immune system can lead to this. a poor diet can weaken the immune system.
get a copy of your lab results and see if you have any deficiencies or excesses. if so, work on those problems only. don't overhaul your whole life because some renal dietitian wants to put you into a box that doesn't consider YOUR needs as a PKD patient. we are different, if for nothing else we continue to pee in many cases after our kidneys fail, most kidney patients stop. (in fact, I'm wondering if this diet calls for reduced fluids).
meanwhile, continue to drink plenty of water, reduce salt and deal with problems only. on that note, bon appetit!

thanks for all your input Helen, it makes sense, which is more than the renal dietician was doing and she got paid a bundle for telling me what my labs were. I already had my labs right in my hand. don't know if you remember, probably not, but my potassium was slightly elevated, same with everything else, the high end of normal, sodium was fine. My kidney doc asked me if I wanted to see a dietician and I said sure, why not. Little did I know how bad I was going to feel. she gave me "one" sample menu because she couldn't figure out how to do them as you have to cross reference everything. I guess a made big mistake doing this because now I am really feeling sick and I was feeling fine before this. No, the diet doesn't call for reduced fluid, 1000mgs. of potassium, phosphorous,calcium and 2000 sodium per day. It's pretty close to impossible to do. The only excess was sugar and low vit. D. Thanks again for your
help. So I have a septic condition, how do I get rid of it? LOL Thanks again..

a septic condition can be any minor infection or illness, often so insignificant there are no real signs except maybe a feeling of just not being yourself. poor diet can lead to this.
btw, not being any kind of nutritionist, 1000 mg potassium seems awfully low, 2000 is generally considered the MINIMUM daily requirement. no wonder you feel awful.
your condition may improve with better nutrition. eat normally except to keep your slightly elevated potassium in mind. cutting back on tomatoes, potatoes and bananas (and any other high potassium foods) may be enough. since your sugar is somewhat high (could that be contributing to your lip sores? maybe!) reduce your intake, use Splenda or Nutrasweet instead of sugar in beverages, have a cookie less than usual. you don't want diabetes added to your problems.
a calcium, vitamin D supplement may be in order. I don't know why your nutritionist said to reduce calcium unless it was elevated, and even then that could be because you are leaching calcium into your blood - a problem associated with parathyroid problems.
I really get angry that so many in the professions tend to use a cookie cutter approach to treating renal diseases. I don't know your nutritionist's qualifications in regard to treating PKD but I can say loud and clear, "I am not impressed".

HI NORMA,

SORRY TO READ THAT YOU ARE NOT FEELING WELL.
I ADD MY COMMENTS WITH SPIDERWOMAN REGARDING
THE FACT THAT YOU MUST LISTEN TO YOUR BODY
I TAKE VITAMIN D 1000 MG DAILY AND EVERY
SINCE I BEGAN IT MADE ME FEEL MUST BETTER.
WE SOMETIMES DON'T KNOW WE HAVE LOW D BUT
LIVING IN MONTANA OUR WINTERS ARE REALLY
TOO LONG FOR MY LIKING, EVERY ONCE IN A WHILE
WE MAY GET SUN, THAT IS WHY I STARTED TAKING
VITAMIN D.
TRY USING VITAMIN E ON YOUR LIPS AND SEE IF
THAT HELPS YOU.

HOPING YOU WILL BE FEELING BETTER SOON.

LOVE BEST WISHES
AUSTRIAN

Well, I am pretty sure that the dang sores that I get all the time are from herpes. I had two this week. I know that we are in the dry dark and cold of winter up here, so that brings on the irritation. And of course, being near the time I need to start dialysis, that's an issue. So, do you think that's what it is Norma?

I use Abreva and it really keeps them from getting big and lasting forEVER. I used to take the amino acid L-lysine, which suppresses that virus herpes...... so started doing that again yesterday, and hopefully that will help.

One of my alternative doc/ friends suggest a very high dose of vitamin D, but my kidney doctor, who does say that renal patients need to take supplements of D, also said that it can cause further kidney damage to take too much. I need to get some copies of his studies on this and share with you all.

Helen, Thats about what I have been doing, no tomatoes, potatoes, all that stuff, but you know at the end of day, almost everything has some sort of potassium in it, those being the highest. And your not going to believe this one but that dietician is a "renal dietician" with all the credentials that go along with it. Not only that my doctor wrote the prescription for me to take to her about what he wanted reduced. He thinks he's going to keep me around a bit longer, think thats his motive but don't really know.

I'am was taking 1000 mgs. of vitamin D and we looked it up to see what the recommended dosage was for people with reduced kidney function, it was one half of that, so I'am only taking 500mgs. now. I don't know whats going on with my body, maybe I'am going into failure, who knows but I'am pretty sure I don't have the herpes virus Heather!!!!! ...:) Although my husband Jim thinks it's from kissing too many "frogs" ! I can see I'am going to get taken to the cleaners with this one! I'll just keep on going along, but my mouth really hurts. I'am using Neosporin for the pain. Oh he's just giving it to me again and again, maybe I'll have to divorce him, maybe it IS the Herpes virus..:) don't think so though.

Well thanks Gals, guess I better start eating right again, maybe that will help and as I said no kidney doc. apt. till april so I'am just going to have to tough it out!

Lots of love,
Norma..

PS: Austrian, we shouldn't take vitamin D without first being tested to see if we really have a defeciency. One reason being is that vit. D is not water soluble, it's fat soluable and can accumulate in the liver and kidneys where it is converted. It can acutally end of being toxic to our bodies, just thought I would tell that we have all learned this over time, so now you know...:)
btw, welcome to our board, and I always wanted to live in Montana, I was a horse woman and loved it there. But we didn't end up there, sad to say. Thanks for all your good advise.

lots of love,
Norma...

Warning, novel ahead!
Norma,
Time to get your labs checked again and your regular doctor can do this; you don't need to see your kidney doctor just for labs. You want a complete blood count, a kidney and liver panel and your vitamin D levels checked, both of them.

If your last labs didn't show you needed to watch your potassium levels (I seem to recall they were 0.1 above normal), then you most assuredly shouldn't be limiting them. Same for phosphorous. I think you should go with your gut on this one and go back to a normal diet unless there was some overriding reason you needed to seriously reduce some specific element in your diet (other than sodium, of course).

As for Vitamin D, LISTEN TO YOUR DOCTOR. Ask your doctor to test you Vitamin D levels then take the supplementations he/she recommends. While yes, Vitamin D is fat soluble, not water soluble, MOST kidney patients are deficient in this vitamin. But first you need to have both your circulating AND stored Vitamin D levels checked and then, based on those labs, talk with your doctor about the need for any dietary restrictions or supplementations (Calcium, vitamin D, etc.). ONLY you and your doctor know what's best for you.

Once you know your levels and know what's in foods, you'll be able to figure out what is high and what it low in potassium and if you tend towards the high end of normal, then don't eat tomatoes, oranges AND bananas every day. Instead enjoy a slice of tomato on a sandwich, or a couple of slices of orange at breakfast OR a banana on your oatmeal. It's not an all or nothing deal.

Now, for those cracks in the corner of your lips. I had those before in cold weather and when I was making a heartfelt but earsplitting effort to learn the flute (be thankful you didn't live nearby; it wasn't pretty and my brother was taking violin lessons at the same time--I pity our poor neighbors!).

For starters, be sure you rinse all the toothpaste not only out of your mouth, but off lips and face every time you brush your teeth. Toothpaste can be very irritating to mucus membranes, especially when it dries. So rinse and dry carefully. Put on the antifungal your doctor gave you (when, how long have your been trying it and yes, anything put on raw skin will hurt), then use a thick lip balm (unscented; definitely no tea tree oil or mint or eucalyptus as those will STING) to keep the area moist. Now the trick is to not lick the area at all, just reapply the lip balm liberally as needed. I know how tempting it is to check if anything has changed, just like we always keep feeling around where something hurts to see if it still hurts, but don't. Look in a mirror, but don't lick or check with your tongue. You'll just undo the good you're doing by leaving the area carefully protected with the balm.

So go get your labs (you can even ask your GP about B-12, B-6 and folate; those are the most common B vitamins doctors test for) and start eating a healthy diet full of all sorts of good foods and just be reasonable about the potassium.

Heather,
I would love to see the articles/info from your alternative med doctor/friend about the vitamin D and cold sores/herpes viruses (and other topics as well). All too often allopathic medicine dimisses naturopathic medicine out of hand because they don't understand it or haven't read the studies because they weren't published in JAMA or a comparable journal because they didn't have a mainstream, big pharma sponsor.

I'm a big fan of L-lysine; it has kicked every cold sore I've started to get right in the rear end (of course after I had one horrible one and someone told me after the fact about lysine). Now as soon as I feel just the hint of a tingle, I start taking the 500 mg tablets hourly. Thankfully my little variant of the virus seems very susceptible to lysine because it only takes a couple of doses and the tingling stops and no cold sore developes. I just this works just as well post-transplant!

Best wishes to all,
Ruth

Yes Ruth.... it's hard sifting all of this stuff to find what fits us. The article I was interested in, was from my nephrologist, about excess supplementation of vitamin D and it's harmful effects on folks with kidney disease. He does recommend vitamin D supplements for kidney patients, but not the 10K per day that some have been advocating. This is an interesting doctor in that he is from Poland, therefore hasn't been indoctrinated by the FDA and drug companies. He's been very helpful with the facts rather than the recipe books and big business in this country. He's the one who has told me which herbs and natural remedies are NOT good for me as a PKD patient, but is very happy with my vegan diet, and agrees that humans do not need animal products to get their protein, and in fact, this diet prolongs the kidney function, according to him, and other doctors I have read. But my alternative friend suggests the "blood diet" which would mean that me, with an O+ blood type, should have lots of read meat. Well, there are so many opinions, and often there is money to be made in the books and supplements these folks have to sell.

But then too, we are all unique, with our own weakness, strengths, etc.

Kind of odd question, but are you using Chapstick or a similar tube-like lip balm?

I had something similar several months ago. It would last for a week or two, go away for a bit, then start all over again. This repeated for weeks. I started looking for similar symptoms online and found the term "angular chelitis." That helped, because it gave me several lists of possible causes - namely dietary deficiency, fungus and bacteria.

My diet is definitely not deficient in anything, so that left fungus and bacteria. I realized that I had been using the same tube or 2 of Chapstick the entire time. I thought maybe the Chapstick could have been trapping the bacteria/fungus and reapplying it every time I put it on. So I grabbed a brand new tube I had lying around and started using my finger to apply it (after washing thoroughly) instead of applying it directly from the tube.

Problem went away in a week and hasn't come back.

I don't know if that's helpful at all, but I figured I'd say something just in case.

Oh my gosh, you are probably so right!!! I have chapstick in my pocket all the time and living in NY where the weather is cold and dry, I use it all the time!! Thanks so much for the tip, I'am going to do just that and see what happens, thanks so much for the info!

Hope it works!

Well that sounds good, and I hope it works for you too Norma. Great advice PKDrunner.

But for me, I have had the herpes cold sores all of my life, as has my brother. So I know what it is, and a pretty clean diet does help, but these dry winters in Alaska as well as not taking my L-lysine has been my issues, as well as the toxins that are built up because of my very low kidney function.

One thing that I am going to do, is get a shingles inoculation, because it's the same family as herpes, Epstein-Barr, chicken pox..... and if and when I have a transplant and the immunosuppressant drugs, I would hate to have to deal with shingles too.