Polycystic Kidney Disease (PKD) Support Group

1000 mg sodium a day is low and I don't know how you manage that. in fact you may not be because there is sodium in everything, even fruits and veggies from your own garden contain sodium, sodium is in unsalted meat etc.
your body NEEDS sodium but not in the amounts in the typical diet.
the healthiest way to eat may not be possible for everyone, we can't all go out in the back yard and pick our foods, grab eggs from the henhouse, make our own bread from homegrown ingredients, but eating as close to natural, high in whole grains, fruits and veggies sure beats a Big Mac and large fries in the healthy food dept.
if you are going over what is probably a limit you set yourself (and a very low one at that), 4 slices of whole grain bread sounds like a good way to do it.
best not to obsess over any part of your diet but to follow a sensible one. the only time you should be truly concerned is if your lab results indicate a problem, such as high potassium or phosphorous.
I recommend asking for a copy of your lab results each time you have bloodwork done so you can follow what's going on. then you won't feel so dependent upon doctors that may not be anywhere near as concerned as you think they should be.

No one should go overboard on sodium especially if they are salt sensitive and have a high blood pressure issue, or want to avoid one. As kidney disease progresses it's even more important to not overdo the sodium but even so occasionally going over the limits won't hurt; doing it every day will. When they do bloodwork they can see what your blood sodium levels are.
There is sodium in everything we salt, everything that is grown from the earth, and all the other stuff that we feed salt to in their diet. Fresh and frozen vegies have salt in them also, but most have hardly any at all. Frozen vegies have sodium (just a bit) by virtue of the fact that they were grown on soil that contains salts. Root vegies might have more and also they soak up sodium; every good cook knows that if too much salt is added to a soup or stew all one has to do is add a bit of a root vegie such as a carrot and then toss it out later; it absorbs the excess salt. Other things also have sodium. Look on labels and anything that has the word sodium in it should be added into your allotment. It would be next to impossible to only get 1000 mg. in one's diet in a day.
A word about water softeners is in order here too. If you have one make sure it has an extra long rinse added in, and/or only have it hooked up to the hot water. Use the cold water for drinking. My drinking water supply is filtered so that I don't get all of the minerals as my water is extremely hard. Lin.

it was probably a low-ball estimate, but I eat as little salt as possible-I never was big on salt, so it's not hard to eat even less. I've been buying 12 grain bread for years after checking all the store brands for the bread with the lowest sodium. some bread has 450mg of sodium per slice, 12 grain is the lowest I could find with 170mg per slice. I get range free eggs from my next door neighbor, we are on good sweet well water, and I grow some of my own veggies-but there is a lot of salt in the soil...at least, if I water deep, white foam comes up, and I suspect it's salt-though it doesn't dry white like a salt pan would. I do buy mixed frozen veggies but go for the lowest salt content and don't eat it often. I buy 4H organic meat, and have cut way, way down on my meat intake. as long as I don't smell meat cooking, I don't really miss it, a suprise for me as I've always wanted it for my hypothyroidism. I do still eat some cheese occasionally. I know that's high in sodium. I have been buying salt free butter and peanutbutter for over a year. my husband has a family history of strokes so I was already cutting back on salt for both of us for years when this hit. I'm not big on salads, but do like a number of steamed vegetables and adore avacados, tomatos and cucumbers. I use salt free spices. I'm really fond of most fruit.
I am still puzzled. the doctors freaked out when they saw my tests, got me on bp medicine, and then just dropped me. they did add vitamin D to my prescriptions. if they'd been less upset at the time (yeah, I know, late stage PKD), or explained that there's a lot of disparet (sp?) information out there but THIS is what I need to do (explained in detail) or just answered my email messages, I wouldn't have freaked out, myself. I finally got a cold from all the stress, and that's when I decided to drop everything and start over from scratch. psychologically, mainly. it's important to focus on the mindset, and mine was not in the right place. so I've got myself better in both health and mindset, and am moving forward from here.
today, my lab tests finally arrived in the mail, (it took them a whole week to send it a mile!)and it was intriguing, and somewhat informative, once I figured out how to read it. I'm high in some things, low in others, and off the charts in a few...and normal in a lot. some hematology is off. and it appears to be changing quickly.
I don't see my endocrinologist until Friday, but I will speak with him on Monday afternoon, as he is my husband's diabetic doctor and he has an appointment with him then. I need to change my bp medicine, the one I have is too strong now. drops me down to 100/70 and I'm loopy and weak. haven't taken it for a few days, but will take one tonight as I'm getting my pressure back up. that's what I'll talk with our doctor abt Mon.
I've been reading labels for several years. I'm especially picky about the level of salt and sugar in the processed foods. my husband thought I was just being mean until he went shopping with me one day and picked out some favorite stuff and stuck it in the cart. I took it out and made him read the labels. he literally sat down hard on his walker seat and dropped his jaw...and put them back on the shelf, admitting that I'd been right all along. he hadn't been in a grocery store literally in years. they just keep jacking up the salt and sugar to where processed food is poison.
we don't have a water softener. we do use a Brita type water filter since this is farm country.

sounds like you've got the diet thing pretty well, the only thing I would suggest is that you don't obsess over the salt thing. if you are not adding it to foods and buying high sodium items you can eat whatever bread you like, in moderation. 4 slices a day sure sounds like moderation to me.
if you want to share your lab highs and lows maybe someone can comment on how to make them better.
btw, bp of 100/70 shouldn't be so low that it makes you dizzy, it sounds like great bp to me.
for anyone who has the time, room in kitchen, and desire, I suggest a bread maker. you can make wonderful, healthy breads without chemicals added. we used to make a sourdough rye with beer that was incredible, it rose high, had a crunchy crust, was low in sodium and sugar.
sometimes the best thing to do is just sit down, take a whole bunch of deep breaths and relax, worrying does no good and the stress can make you sick, not to mention elevate your blood pressure.
you have friends here who understand what you are going through and will hold your hand through the tough times.

Everyone has given you good advice. I went on a low sodium diet for 3 months a few years ago to see if it would have any effect on my blood pressure. The diet that I went on was the DASH diet which was developed by the American Heart Association. I did lose a few pounds, but my blood pressure did NOT go down. It was also very difficult to stay on long term, since I enjoy going out to eat frequently. Since then, I have tried to use common sense in limiting high salt choices and have not done anything else. My blood pressure is controlled well on medications, and though it would be good for my health to lose some weight, otherwise I am healthy. If you are pursuing a low sodium diet for blood pressure control, be aware that not everyone is "salt sensitive", and though most people will have some blood pressure reduction by reducing salt, it is likely that you will still need medications to keep it at the levels now recommended. ACE inhibitors and ARB's are showing in research to have benefits for people with PKD whether or not they have hypertension, so some doctors are prescribing them even if your blood pressure is not high!

Mooeygoose,
Actually...blood pressure management as a PKD patient approaches ESRD is a challenge. While ACE inhibitors and ARBs are great for most of us, there comes a point in time (functionwise) where they can actually be counterproductive and cause more harm than good. My neph has warned me that at some point I will need to switch from my ARB to a beta blocker, but I'm not there yet (and he doesn't have a firm, fast rule as to when that switch happens; it varies by patient, function, labs, etc.). The alternate BP medication is a beta blocker, which come with an informal label "guaranteed to make you tired" as it slows down your heart rate to no more than 100 beats per minute even during exercise. The full prescribing instructions for ACE inhibitors and ARBs explains some of the rationale for why not to use them when a patient is in or near ESRD.

Heather,
You're doing all the right things now; I can't imagine doing anything more "right" than what you're already doing. Enjoy your 12 grain bread; it sounds fabulous and as long as you're not eating the whole loaf in one sitting, I think you're just fine. Your diet is so much healthier than the average American's to begin there really isn't much room for improvement. At some point the source of protein is going to be a challenge, especially if you end up on dialysis, so we'll think positively and just decide here and now that you'll get a transplant before that happens!

Do feel free to share the labs with us (all of them so we have them in context; just giving us the highs and lows without seeing the full picture makes it difficult to help you understand what's going on). You can either post them or send them to a select few via private message; whichever format you feel most comfortable with. Knowledge is power and understanding what all of those labs means and what the numbers represents makes a world of difference!

Best wishes,
Ruth

They just started me on the renal diet for kidney failure patients when I had my left kidney removed a couple of weeks ago. The salt restriction recommended was 2000mgs per day! And that's with a kidney function of 23. If your function is still good and your labs are normal, I think 2000mg per days is a realistic number.
Tami

hi, Tami, no, I'm at 13-18 function. so I'm trying to watch my salt intake but have been a bit off the wagon lately-not terribly. I ate out 2 days ago, was conservative, had Sizzler's salad bar, plus cooked veggies on the side. half a cup of clam chowder. dinner cooked for me by our Mormon neighbor two nights in a row, lower sodium but still with sodium. bp was so low this morning that I ate two low sodium hotdogs for lunch, so definitely over 1000m today. but back to low sodium for a while. will see my endocrinologist Friday. tested medical dna so we will discuss that as well as my tests. I'll let people know the outcome.

I have 21% function and I am allowed 1500mg a day.

In regards to the sodium in processed foods, the gov.has enacted new guidelines and the food industry was given a certain amount of time to respond. They are doing a great job in meeting the requirements, and doing so way ahead of time. Speaking of hot dogs I've noticed where all of the popular brands of all beef franks have all but cut the sodium amounts in half. That's great news for me!!! Yes, I know bad Lin. but ..........