bicarbonate of soda (baking soda) tablets are often prescribed as kidney function fails, it helps balance out the system but I don't know exactly how or why. someone as smart as Ruth probably can explain it. I only know I felt better when I took it - but it was ON DR'S ADVICE to correct an imbalance.
baking soda is high in sodium and that is not good for most people with kidney disease. if for that reason alone it should not be taken unless there is a medical reason.
I have never heard of baking soda doing anything to slow or stop the growth of cysts.
please Norma, we are all looking for the magic bullet that will stop PKD but taking substances without knowing what they can do to you is very poor policy. your best bet is to have your labwork done, get a copy of the results and question anything that is not within normal limits. only then should dietary changes be made or supplementation begin. that does not mean you shouldn't follow a healthy diet, low in sodium (baking soda included).

I of course know better than to do something that stupid, but I guess a lot of people wouldn't. Thanks for your input, didn't really tell me much about what baking soda does that would balance out your system. I am a health professional and know all too well what people would do to prevent renal failure. Heck, I would do anything myself to prevent it. dialysis is the most barbaric thing anyone invented just to keep someone alive. I have had many family members on it and the nightmare stores never end. Taking too much fluid off, the consequences of that, etc., etc., Many people would do anything to avoid dialysis, particularly when they know what it really does, other than to keep you alive. If baking soda did something to me to prevent going into renal failure I would take it! No doubt about that, the difference is that I would discuss it with my physician before doing it. thanks again for your comments.

Why exactly is sodium so bad for our kidneys? We know we need sodium but often get too much now. I'm just wondering what makes sodium so bad for our kidneys. All I've heard is about how it can dehydrate you, but why couldn't you just drink more water?

(I'm not implying that too much sodium isn't bad for us. I just wanna know why it is.)

So what is it that dialysis does other than to keep you you alive? Your statement sounded so ominous I thought I would ask.

I am curious too about the terrible things dialysis does. I met a man who was on dialysis for roughly 25 years, our PKDLin has been on dialysis maybe 8 years.
all too often people who go on dialysis are already old and very very ill and maybe dialysis just helps keep them alive but for a person who is otherwise in good health, relatively young and strong dialysis, like the rest of your life, is what you make of it.
for me I was determined to live my live as normally as possible and used dialysis time to read all the books I wanted to get to but never had time. I made sure the person at the controls set the fluid removal for MY needs, which were little or no fluid removal.
sure I could have been a quiet, complacent little vegetable and just sat there watching Jerry Springer or something else to rot my mind but I made the calls. I was NOT ready to just give up.
yes kidney failure and dialysis are not what we grew up hoping for. neither is a heart attack or cancer or many other diseases for which there is NO HOPE OR TREATMENT! with PKD there are treatments available now and hopefully something in the future that will slow or stop the growth of cysts. unless cyst growth is stopped or slowed down any "miracle cure" such as baking soda won't really help. it sure would be nice but I can promise you this Norma, if such a thing comes along someone on one of these support group would be thrilled to share it. I've heard so many of these so called miracle cures already, many that can do more harm than good and none that would slow or stop cyst growth - except those that are now in trials and may be available soon.
Alona, sodium can dehydrate you, it can also elevate your blood pressure and it can cause edema (swelling). I am not a scientist but I have learned to do with a lot less sodium and when I use too much I can feel it. I have also learned to enjoy the taste of the food rather than the taste of salt. I've learned to flavor my food with herbs and spices, vinegar and lime or lemon juice. I read labels and buy the products that are lower in sodium.

As somebody who may need dialysis in the near future I find it hard to read about how terrible it is. I was trying to think positively about it as I don't really relish the idea of it at all.
My creatanine has jumped up again from 490 to 570 in the past 2 weeks and my urea from 36.9 to 41.9. My gfr was 8. If anything it must be less now.
For whatever reason, the kidney specialist hasn't even broached the subject of dialysis with me. Indeed she refused to discuss it yet. I don't really understand this because, according to what i read on your information page, it is often discussed when gfr goes below 30. Indeed it is stated that people can go on the transplant list when gfr goes below 20. If that is the case I could have been on this list for the past three years or more. Yet the consultant never told me my results. I only learned them recently from one of the GPs.
So I am torn between pushing for action which could involve dialysis and just letting things continue to deteriorate which seems to be what is happening. Since April the creatanine has gone up by 164 and the urea has also shot up. The gfr has fallen from 11 to 8 or possibly less. It is hard to know what to do for the best.

I run the risk of sounding like a broken record, but, I highly recommend the PKD Foundation's website, in particular the A to Z Guide to PKD, where you will find detailed answers to many (not all!) of the questions posted here. Here's the link for the guide on hypertension, which touches on sodium: http://www.pkdcure.org/Default.aspx?TabId=79
Patricia, I learned from people at the PKD convention that the decision to go on dialysis isn't just tied to numbers, it's tied to how a person feels. Apparently there are people who technically "should" be on dialysis, but, they feel fine and others, whose numbers are much better are very, very sick and have to start treatment. This does not excuse your doctor for keeping you in the dark. Bottom line, how are you feeling?

Your kidneys are the master chemists of your body and work very hard to keep all of the electrolytes within very narrow tolerances (electrolytes include sodium, postassium, cloride, calcium, etc.). Among those are your carbon dioxide levels (CO2), which are used to evalute the pH status of your body and assist in evlauting your electrolytes. It's a rough guide to your acid/base balance (for a more accurate test, an arterial blood gas test is required; that one is no fun and can hurt like hades).

Maintaining the CO2 levels in very narrow toleranace, just like all other electrolytes, is critical. But if/as our kidneys start to fail, they lose their ability to maintain these narrow tolerances and often need some assistance. So if your CO2 levels are low, your doctor will prescribe very precise doses of sodium bicarbonate to raise your levels to that very narrow safe range. Without the sodium bicarb, a patient may develop acidosis, a potentially life-theatening condition.

However, this is NOT something you want to do one your own. It's all too easy to take too much and end up being too alkaline and end up in alkalosis, an equally life-threatening condition. That's not to mention the fact that sodium bicarbonate (baking soda) has has 180 grams of sodium per serving and a serving is consider to be 1/8 of a teaspoon, a very small amount!

So why is salt bad for us? PKD patients are considered to be salt sensitive when it comes to blood pressure, meaning salt raises our blood pressure. Even if your blood pressure is normal (120/75 or lower), your blood pressure is naturally higher in your kidneys in order for the toxins in the blood to be filtered across the tubule membrane. Increasing your blood pressure, even within the normal range, will increase the blood pressure in the kidneys, causing additional damage to the tubules and nephrons above and beyond what PKD is already doing.

And with the kidneys being those master chemists, when they sense the presence of additional salt (sodium) they now have to work harder to keep all the electrolytes in balance. Ingest too much sodium and the kidneys are have to work even harder trying to balance out sodium versus potassium versus fluids. Our blood pressure goes up, we retain fluids (which also increases blood pressure), and electrolytes get out of tolerance until the kidneys can get everything under control again. That's not to mention the effect of the increased blood pressure on the heart and brain, possible aneurysms, and hardening of blood vessels in response to the increased blood pressure, etc. It's a vicious cycle.

That said, yes, I do enjoy a small grind of sea salt on garden-fresh tomatoes (my neighbor is keeping me well supplied). And I've been known to eat fast food and even a frozen dinner at times (I read labels and try to compensate at other meals). No one is perfect, least of all me. But I do try to make an effort to watch my diet and keep the addtitional sodium intake to a minimum. I use herbs and fruit juices for flavorings and marinades (fruit juices work fabulous as marinades and breakdown the tougher meats just as well if not better than bottled marinades, soy sauce or other salty marinades do).

Enjoy life to its fullest. Even the chocolate!

Ruth

Thanks, that is very helpful.

I was also wondering:

How do our kidneys feel about things like Powerade and Gatorade? (Since they contain elcectrolytes, including sodium and potassium)

And why is Potassium potentially bad for the kidneys, is it the same reason as sodium? (also, why does potassium affect sodium?)

Thanks so much.

~Alona

Hi Alona,
I have discussed powerade or gaterade with my daughter's nephrologist, He is our main source of information since he always seems to willing to take time to answer all of our questions. Care in the Children's hospital is so much better than the adult sector.

In his opinion it is fine to have an occasional gaterade, especially is a person is genuinely dehydrated from exercise or the flu. He is of course referring to a person who has pretty good kidney function still. I believe your function is still good as well so it should be fine for you occasionally as well.

Too much potassium can cause a heart attack. For a person who is in kidney failure their potassium level can get dangerously high as their kidneys are no longer filtering out either sodium or potassium. This would be why dialysis patients are required to follow strict diets that monitor their sodium, potassium, and liquid intake.

I don't really know how potassium affects sodium levels. I believe ideally there should be a balance between the two so that one level is not higher than the other. I'm sure someone else,( probably Ruth) would have more information regarding that.

Hey, Guys!

Discussing the fear of dialysis only seems to make the fear increase!
There are many people doing reasonably well on all forms of dialysis.
Now, with the increasing availability of overnight and home hemodialysis, results are improving.
Of course, adjustments have to be made, but it probably isn't helpful to inject fears which come out of ignorance.

Like LHanley suggested, do some research, get more information, talk to people on dialysis, and develop a more educated opinion.

At the very least, you will be more emotionally prepared for the eventuality of dialysis.

Peace and Blessings!
CoachRichie

for Alona and Kelley, potassium (K) is ONLY bad for you if your kidneys won't process it, as in kidney failure. K is necessary and can help maintain good blood pressure, it is beneficial to the heart.
I've said this many times, people should only make dietary changes if their labs call for it. that is not to say people shouldn't lower their salt, fat and sugar because too much of any of those are bad for health in general.
just as too much K can cause serious problems and even death in people whose kidneys can't process it, too little K can also be very dangerous.
again, DO NOT MAKE DIETARY CHANGES UNLESS YOUR LABS INDICATE IT. if your labs are too high or too low in K, then do what you must, otherwise leave well enough alone.

I asked about the powerade because I was drinking one at the time and I was reading about what is in it. I don't like powerade or gatorade very much because I am extremely picky about drinks.

The only reason I drank it at all was because there were only 3 potential things I might like (I don't drink any kind of colas). Sprite, Powerade, or Dasani water. Well, I didn't want Sprite (I'm trying to cut back on the little bit of Sprite I do drink - which is only when I go out to eat cuz I only like fountain or can Sprite, lol). And I really hate Dasani so I only drink it if I really really need water. So this left me with Powerade, which I'm not crazy about, but can tolerate more than the Dasani and I figured would be a little better for me than Sprite.

After I drink some of the Powerade (Marc had to finish a little less than half of it) I put some fountain water in the bottle and drank a little of it but it still smelled like Powerade so I couldn't drink much.

Thank goodness for my water filter or else I would hardly drink anything.

Lately I have been paying more attention to when I am thirsty (I used to ignore my thirst, most because I don't like most drinks).

I only like:
2% milk (plain upsets my stomach though)
Chocolate milk (high in sugar and takes time to make)
Orange juice (too much upsets my stomach from the acidity)
Sprite (sugar)
Crystal Light Fruit Punch (time and stains everything, even the cup)
V8 Splash (sugar and expensive)
Filtered ice water (only at home)

I can occassionally tolerate Powerade/Gatorade and Cranberry-Pomegranted Juice (with a couple melted ice cubes to dilute the strongness).

So as you can see, most of the things I like I need to limit or it is limited for me.

Whow, did I ever make a mistake joining this group, all I did was ask a hypothetical question about "BAKING SODA" Forgive me, I won't be asking anything anytime soon. Have a good life everyone... I'a getting off here and fast! One odd thing about a group so big, only the same people answer everyone's questions and it seems that not many people are asking questions anymore, wonder why!

I'm really sorry you feel that way Norma. your question opened a discussion and I feel that is a good thing. people should feel free to ask questions that are related to the opening subject and sometimes a discussion gets sidetracked. when it does it opens an opportunity to learn something new.
I must agree with you, only a few people are answering questions and that is too bad. support is not only asking for help, it should involve offering help whenever possible. come on everyone, lets get more involved in helping newcomers to deal with the challenges they are facing. if you have any experience, try to help others by sharing.