Renal Diet - can anyone help?

[lmgervais]

Hi there! Sorry that I have not been around for quite a while. The time from September to now has been very challenging medically for myself and two of my kids - between us, someone has been to the emergency room at least once every month since September. And life has been almost a total right-off for me since about mid-March when I ended up in the hospital for 10 days.

As you may or may not know, I have an inherited illness called polycystic kidney disease (PKD) as well as the added bonus of liver involvement so I also have polycystic liver disease (PLD) - people have been asking me for almost 12 years if I am pregnant due to the size of my liver.

Anyway, further to my stay in the hospital, I was put on a renal diet just over a week ago as my function is now down to about 20-22% and am having a lot of trouble with it. I was wondering if anyone else has had to deal with these restrictions and how they have managed.

Basically, it consists of very limited protein (4 oz a day for me), low sodium, low potassium, low phosphorous, but enough calories to prevent further weight loss.

Any help would be appreciated.

[grynche]

:hug:

[lmgervais]

:hug:

Thanks. I've been needing lots of those lately.

[KathieB]

Liza, you have quite a challenge before you. Please know we're in your corner. :hug:

[Lynette Smith]

The low protein is one I've not heard of before.

My niece was diagnosed with End Stage Renal Failure 6 years ago, with 2% kidney function. She goes to dialysis 3 days a week and is marginally compliant with diet and medications. Since she lives next door and has no telephone, I get phone calls from the nurse when her lab results are way off. Her not taking her blood pressure medicine results in alarmingly high blood pressure and she has been told she may have a stroke if she doesn't do better.

Things I know she needs to avoid are orange juice, parsnip greens (a book on plants and healing says the levels of potassium is so high it could kill a kidney patient instantly, it didn't say how the root was potassium-wise), milk products, organ meat (liver, kidney, heart, etc.). I know more things will come to mind after i post.

Good luck, you are the most important element in your continuing health and I'm glad to hear you are actively taking measures. Big hug.

[Shy Spirit]

Oh my, Liza. I'm so sorry you and your family have been going through such a rough time. I'm no help with information, as I'm not familiar with this diet. I will be thinking of you and yours, and sending good vibes, and lots of cuddly hugs! :hug:

[lmgervais]

It is being a difficult journey, and a diificult diet to comply with. Still not in complete compliance, but working on it. Going to see the entire care team at the hospital tomorrow for the first time.

Thanks for your thoughts.

[havanaholly]

Diet compliance involves reteaching your tastebuds. It's very difficult if you're the only person in your family to have to comply, especially if you're also the primary food preparer. Hie thee to the library and check into the Moosewood cookbooks, which are vegetarian and have totally fantastically good recipes, and see what's on your diet list that there are recipes for. Get with your dietician and put him/ her to work! And let the rest of your family work out cooking for themselves, YOU need to follow the diet to be there for them.

[grynche]

What Holly said about retraining your tastebuds is really the biggest battle. Mine still torment me with constant nagging little voices that say "Hey, this isn't the real thing, it's that blechhy gluten-free stuff. <spit, spit>" You can try beating them into submission, but wooing them with "only you get to taste these special treats" will likely work better. I'd forgotten about the Moosewood cookbooks; used to use them all the time. Great recipes.