No dietician yet

[BRANDY]

I dont get a dietician till I actually go on dialysis.  I dont understand this , I am going to a Davita center when the time comes, but they say there dieticians dont see prdialysis patients . That just dont make sense to me. It lhas to do with them getting paid I believe.  How are we to stay off D if we dont know what we are to do .  I was given a chart on  phosphorus ,     How  do you balance what you digest. I know this is alot of questions  but I am at a stand still.  should I stay on salads  or what.   Im real bad with meat.  I am getting nausea from it  and I know it  I am going nuts trying to figure it all out.  Doc put me on calcium for binder of phosphorus at each meal. Does that dound right.
HELP please.

[Wenchie58]

I never had dialysis.  I got my dietitian through my nephrologist.  Ask your neph,  he/she should be able to make a referral.  But...and this is a big one...even with the dietitian its like a new job to get the diet thing straight.  I stayed Pre D for almost 2 years...so all the frustrations and juggling are worth it.  There are several here who can help you...I have more faith in the IHD folks than in any dietitian who learns from a book!
Good luck!

[G-Ma]

Every nephrologist office I've been to has a dietician on staff.  Check with your neph.
Ann

[silverhead]

Thats one of the problems of going to a for-profit center as opposed to a non-profit one, Sharon had regular contact with the local non-profits Dietitian for almost 2 years before she began the actual hemo. Try contacting possible other centers in your area.....

[BRANDY]

Silverhead--- what do you mean non-profit or profit organizations  where do you go about finding them? I thought the Davita was going to be the best choice.  The ones I do know about is to far for me to go.  I sure do need to figure out something

[Rerun]

Brandy, dialysis sucks out a lot of protein, so when you are actually on dialysis you will be on a high protein diet.

Protein is hard on your failing kidneys, so predialysis you are on a low protein diet.  That is why the DaVita dietition can't help you.  She only sees dialysis patients.

DaVita is FOR profit and once you are on dialysis you are a money maker to them.  Until then you are nothing.

I tried to find a dietition as well to help me when I knew my kidney was failing but I had to pay her out of pocket so I just ate what I wanted while I could.

Best of luck I hope someone else can help you.     

[Chris]

And not all dieticians are the same from my experience in the hospital. There are dieticians who specializes in each field. Some specialize in dialysis, diabetes,chron's disease, etc, and some know a combination.

Don't forgot to lower your potassium to besides the phosphorus.
Last dietician I saw was worthless post transplant who was reccommened by my neph.Seems when you need to gain weight, they are clueless and give bad advise, or just don't listen.
I'd say watch your phos and potassium, but that has been said pretty much already.

[Tinah1968]

I am also Pre-D and am having trouble finding a Dietician as well. They do need to come up with a List of what to eat and what not to eat. But if they did that then that would keep people off dialysis and they don't make any money! So I think that they find it easier and more profitable to let you make it worse so that you can get on dialysis.. I just try to eat more Salads and I stay away From RED meat but I eat 3oz Chicken with one meal each day.

[pelagia]

My husband's neph wouldn't refer a dietician and so, we had to find the information ourselves. 

There are resources on the web and resources here on IHD.  If you go to the home page and use the search feature, you can find information such as this:

http://ihatedialysis.com/forum/index.php?topic=6981.msg102254 (I used search words "diet" and "pre-dialysis")

here is another useful link:

http://www.aakp.org/aakp-library/Diet-and-the-Predialysis-Patient/

The target guidelines given are:

"about 45 grams protein, 2400 milligrams sodium, low phosphorus"

you can easily find lists of high and low phosphorus foods online

[skyedogrocks]

Rob received his dietary info from his neph and their dietician.   About 4 months before he started dialysis, I started to change his diet, very slowly.  I bought foods with less phosphate and potassium so that once he went on dialysis, it wasn't a complete shock to the system.  Ask for a dietician from your Neph, but also be proactive and research the information on your own.

Here's a link on IHD that has some great information
http://ihatedialysis.com/forum/index.php?topic=1867.0

Actually the whole forum on Diet & Recipes is excellent
http://ihatedialysis.com/forum/index.php#2

[jbeany]

Are you getting regular bloodwork from your neph?  You should be at least once a month.  Get him to give you the results, and find out what your potassium and phosphorus levels are.  If the phos levels are high, you can start on binders long before you start dialysis.  The potassium is harder to control - you have to do that with diet, not meds.  Check the levels first, though, before you start adjusting your diet.  Not everyone has problems with potassium or phos pre-dialysis.  (My potassium stayed low the whole time.) If your numbers are good, you don't have to adjust as much.  A lower protein diet may also help preserve your kidney function, but there's a lot of debate about that.  Getting sick when you eat meat is normal when you are getting close to time to start, so lowering your intake isn't that hard to do, unfortunately.

[BRANDY]

You guys have really helped me  and the websites  will help also Im sure I  will surely check them out  thank !!!!!  I do agree with the statement about  they just want you to go on dialysis , for their gain.  Yes I do watch my potasium, I dont eat salt at all , I also rinse my can goods out 2 times . My  potasium  I can tell by the cramps if it is high. As for phosphorus I really dont know what it is .  Im just now trying to figure out about it. I usually get tested more now that my GFR has gone down. But we are going  to get fistula soon.  That worries me also .  Im getting cold feet at the idea. but I  do know I have got to get it in place for when I need it. I need lots of prayers to help me.I guess I have said enough. Thanks again for your support.Just knowing I can come here and talk helps also   I want to give all you all a group hug

[paddbear0000]

Good luck with getting your fistula! I'm in the process of getting mine, so I know how you're feeling. 

[BRANDY]

Hey Paddbear good luck on your fistula and come back and let us know how you are doing  Maybe we can compare notes.

[nursewratchet]

Our Dieticians ( I have 2) see prerenal patients.  We are a Davita clinic, but also a "joint venture" clinic, meaning the Dr.s group owns a share.  Ask the neprhologist to send you to the clinic you will be treating at for a dietary consult.  It shouldn't be a problem, if he calls them, we do it all the time.  You need to avoid dairy, cheese, breads, beans, rice, tortillas and potatoes for starters.  That should help your phosphorus, since you are already taking binders.  How are you labs???

[BRANDY]

MY gfr IS 16.97, Creat.3.27  bun 37 alb ok  cal. low, iron low, pth ok that is all I remember. Thanks for heads up on the phosphorus items. If you are a large frame woman  what would be the chance of having small veins. It is starting to worry me about that, I sure dont want to do pd. Its either  needles or catheters , I prefer the needles  I think.

[G-Ma]

I am large frame and have tiny veins..go figure...at least something was tiny....   

[BRANDY]

G-Ma ---- are you on PD or hemo? if hemo are you doing alright at dialysizing. do you have fistula or graft. If I remember right someone said if fistula might not work  try doing graft. Is the graft a goood way to go?

[nursewratchet]

Fistual first, graft second, catheter as last choice.  FISTULA FIRST!!!  If at all possible.  Avoid the catheter...

[G-Ma]

I'm on hemo...I had to start in ND, no vasc surgeon and the surgeon that did it said could not find a vein so threw in a graft in right forearm and the dialysis nurses and techs acted like they were forcing a telephone pole in it, constantly infiltrating and I had not found this site so didn't know better and it clotted off 7 months after surgery so they tossed me into emerg surgery and put in a catheter that I grew to love but had to say goodbye to it this year...so mine was all backwards but now I know what to ask and look for and learning how to rattle cages thanks to IHD.
Ann

[BRANDY]

Nursewratchet--Thanks for info regarding fistula. Is it better to get fistula put in lower or upper arm? I am  hoping one day I might be able to do home hemo , way later. It is a possibility.Whar causes these blockages and why are they infiltrating cant they tell where to stick fistula?

[pdpatty]

These are two sites I find most helpfull in controlling potassium and phosphorus,I think I posted them befor but a repeat of something this important doesn't hurt.

USDA National Nutrient Database for Standard Reference, Release
Content of Selected Phosphorus

http://www.nal.usda.gov/fnic/foodcomp/Data/SR17/wtrank/sr17a305.pdf


USDA Nutrient Database for Standard Reference, Release 15
(mg) Content of Selected Potassium, K Foods per Common Measure, sorted alphabetically


http://www.nal.usda.gov/fnic/foodcomp/Data/SR15/wtrank/sr15a306.pdf

[paddbear0000]

Great info pdpatty! I was reading through the phos chart, looking for soda, and ran across something called 'cheese sauce, prepared from recipe.' What on earth is that?!

[pdpatty]

I have no idea unlessit would be a sauce to pour over veggies,but I cannot eat too much dairy. Too much calcium.

I had a hospital stay last week due to diverticulitus and upon leaving was told to stay on a coronary diet(no salt and no caffein)
This link might also be helpful if you are trying to eat less sodium.

http://www.nal.usda.gov/fnic/foodcomp/Data/SR18/nutrlist/sr18a307.pdf

[Zach]

The overall search engine is also very helpful:

http://www.ars.usda.gov/Main/docs.htm?docid=4451