Polycystic Kidney Disease (PKD) Support Group

I eat regularly with vegetables, white meats, fruits and plenty of water to keep my kidneys flushed out. Brown wholmeal bread, low fats,yogurts.
Hope I'm a bit of help to you.

Robin,
First, you need to eat. There are no right or wrong food. There is no magic combination of foods that will cause the cysts to shrink or make them grow faster. Food is essential to life and not eating will simply make you sick. Please read the "just diagnosed" and "new to PKD" postings for some ways to cope with a new diagnosis of PKD and feel free to ask any specific question you may have as well.

As for diet, there literally are no right or wrong things you can do. The best recommendation is low sodium: trying to get no more than 1500 mg of sodium in your diet per day. For someone who subsists on fast food and take out or frozen dinners, this is going to take some adjustment, so do so slowly. If you already make your own meals, some minor tweaking here and there and reading labels will be sufficient.

Drink plenty of fluids, preferably water. Don't restrict any other types of nutrient such as potassium or phosphorous; those restrictions are only needed if/when your labs change and your doctor will let you now if you ever need to make those changes.

Fresh fruits and vegetables, whole grains, legumes/beans, and a reasonable amount of protein (a deck of cards, not the supersized serving we've come to expect in a restuarant) should be the focus. There's an endless debate about protein and kidney disease (proven link that somewhat reduced protein can help reduce the burden on diseased kidneys with most kidney diseases), but there's no proof that the same applies to PKD due to the way PKD manifests. Only you can make the decision about how much protein to eat, but remember that protein is a critical element of a healthy diet and you MUST protein in some form, even if you choose a vegetarian diet instead of a more tradional one with meat.

Caffeine: it's best to limit your caffeine intake to one or two cups per day (6-8 oz cups, not giant supersized containers). If you drink a lot of caffeine right now, please do not stop suddenly, but taper down on your intake. Suddenly cutting your caffeine intake can cause a whopper of a headache that can and probably will last for days (been there, done that; it was sheer hell). Try substituing about 1/3 decaf to your regular coffee or tea (or other caffeinated beverage) each week and slowly, slowly taper down. Trust me, you really want to avoid that headache; acetominophen does very little to keep it in check!

Meds: Acetominophen (Tylenol) only; no ibuprofen (Motrin) or naproxen sodium (Aleve) except at the direction of your doctor. If you're in an area that uses paracetamol, please talk with your doctor; I'm simply not familiar with it and don't know if it's a non-steriodal anti-inflammatory (NSAID).

One of the best mottos I've ever heard on diet and most things in general was coined by Spiderwoman (aka Helen): ALL THINGS IN MODERATION! If you want some chocolate, have some chocolate. If you want a little extra salt on that fresh summer tomato (like I just had today), have the salt on the tomato. There are no hard rules and you don't have to deprive yourself of anything or make life too rigid.

I hope some of these suggestions help. Welcome to the board and please let us know if you have other questions; we've been there ourselves and have plenty of experience to share!

Now go and eat something!!
Ruth

there is no evidence that any type of food will accelerate cyst growth, tho some believe caffeine MAY have that effect. to my knowledge there is no proof but it can't hurt to reduce caffeine. a cup of coffee in the a.m. is fine, 4 or more is not. drinking colas and other carbonated drinks does you no good whatsoever but adds weight so why bother.
a healthy diet, low in sodium (which can raise blood pressure and possibly accelerate kidney damage) is best.
if you have no problems with your labwork there should be no restrictions except common sense ones, salt, sugar and fat which most people eat too much of. that along with lowering caffeine consumption should be all that is necessary.

Thanks PKD family, I'm reading this smiling and crying at the same time...just to let you guys know my mom cooked a meal so delicious collard greens, cornbread rice pole beans and beef. I ate the hell out of it, I was so hungry...went to walmart today and bought my fruit and veggies. Thanks for responding, I can't lie I'm very scared so I pray for strenght daily. I'm taking my lisinopril and pain meds daily because I have a lot of pain in my left side and back. Getting CT SCAN results thursday, I will let you guys know the outcome...Thanks again pots,ihavepkd and you too spiderwoman8!

The others have already added wonderful advice on diet; I just wanted to say that the meal your mom cooked sounded wonderful. Greens and cornbread in the same meal is wonderful! Lin.

oh wow, next time your mom makes a meal like that, let us know. Lin and I will be there, don't know who else but it sure sounds great.
I LOVE collard greens and the rest sounds good too.
if you are afraid, it is understandable, but know you have a family here who will hold your hand and help your through it.

Hi

The pain will pass. That's one thing we all learn. Rest in bed and it passes.

Then, when it does, wear loose clothing and watch how you move, exercise and bend over. Lift something too heavy and you'll be back in bed.

On eating... Eat what you love, eat what makes you feel good and makes you happy. Sweet potato pie, fresh bread with lots of butter, fresh green beans off the vine with butter, pasta with fresh basil, scallops and lots of romano and butter. Seeing a pattern here? Eat comfort food. And cherish every day. Be well.

Robbie,
Many of us find that heat helps tremendously with the pain. You may want to try a soft heating pad when you're stationary or even a Thermacare back heat wrap (or generic version from WalMart), but worn in such a way that you center the heat around your left kidney area (use the ones for the lower back; they wrap around the body and fasten with velcro; you can adjust them to fit any part of your body and get them to stay in place higher up with a tank top or snugger camisole). The heat is amazing and really does help. I know it sounds strange, but it makes a world of difference.

Count me in for the homecooked meal too!
Ruth

Hi, Robbie!
At a PKD Seminar last spring, we were advised to eat a vegetable-based diet.
Eat colorful vegetables. Ease up on the potatoes (potassium) and ease up on meat and dairy (protein).
No cola!
With those guidelines, eat heartily!
As for your cysts, what will be will be.
Drink lots of water and kep your blodd pressure in check.

Peace and Blessings!
CoachRichie
http://www.innergameofpkd.com