Polycystic Kidney Disease (PKD) Support Group

hi and welcome to a great support group.
its always a good idea to get a copy of your labwork so you can learn what the values mean. generally don't pay a lot of attention to anything in the normal range but keep an eye out for any highs or lows, usually indicated with an H or an L, sometimes with a + or a -.
as for diet, most Americans eat a diet that has more sodium than necessary and more than anyone with heart or kidney disease should be consuming. cutting way back on salt helps a lot. cutting back on fat and sugar will help keep you healthy in general.
if your labs indicate highs in potassium or phosphorous you should get advice about lowering your intake, otherwise continue to follow a healthy diet, lots of fruits and veggies and whole grains.
there is some controversy over lowering protein but there is no evidence that protein contributes to cyst growth and I was told NOT to lower protein because of the danger of malnutrition and muscle loss. that doesn't mean a huge ham, sausage and eggs breakfast, a huge burger for lunch and steak for dinner, it means a sensible amount of protein, a large part from vegetable sources.
continue to exercise as much as you are able, the healthier your whole body is the better for your kidneys.
ask any questions you want, there are some very smart people here who can give great advice.

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Welcome!
I know that brain fog feeling. The doctor keeps talking, but all you heard was PKD and 25% kidney function and your brain just freezes. You know the doctor said all sorts of things and you even participates in the conversation and asked intelligent questions at the time, but darned if you can remember what they are!

Our emotions cloud what information our brains can process and recall and you got a whopper of an emotional punch yesterday. To help with this, for your next visit (and something I do with all my visits), bring along a spouse, loved one or trusted friend to take notes and ask questions. They will invariably hear things you didn't hear and will often think of questions to ask that you didn't. And keep a notebook where you write down all your questions and the answers and bring it with you to your appointments. It helps immensely because invariably when you're sitting in that chair in the office, you will forget at least two or three things you meant to ask about. But with the notebook, you just pull it out at the beginning of the appoinment and refer to it throughout the visit. You can keep track of your BP in it, how you're feeling, any questions you have, notes, phone numbers, etc., even rewrite everything for your appointment on a separate sheet of paper, but keep it all in the same notebook so you can flip back and forth and be sure you didn't miss anything. My doctor is so used to me and my notebook he asks me where it is if I don't immediately pull it out. And since lately I've been forgetting to use it (severe brain fog due to medications), I've had to send him emails asking for prescription refills, etc, things I would normally have had well under control if I had been using my wayward notebook.

I bet if you make a list of questions, then call and ask to speak with you doctor, he'll be more than willing to talk with you and answer your questions again. Just let him know you were hit with a bombshell of information and although you know you had a conversation with him during your last appointment, you really need some clarification. Chances are very good he'll understand.

And please, feel free to ask any and all questions you may possibly have here. We each have our own lifetime of experience of dealing with PKD (I was diagnosed 21 years ago; am now 48).

Helen (Spiderwoman) gave some excellent advice. I would add that in addition to getting copies of all of your lab results, you also keep copies of all of your imaging studies, both the reports and the actual imaging (the imaging centers will put the studies on disc for you for a minimal cost). This way you have everything you need to keep track of your healthcare and/or see a specialist at your fingertips.

On the protein issue, it's important to remember that in this era of supersized restuarant portions, a serving of protein is the size of your palm or a deck of cards. If your potassium and phosphorous are okay, go for a variety of whole grains, fruits and vegetables (just take it a bit easy on the tomatoes and orange juice (as in perhaps not at every meal or every day; I find it's easy to overdo those since they taste so good and we're right at the end of heirloom tomato season and they will quickly cause my potassium levels to reach the top of the normal range...they're just my weaknesses and my potassium triggers; otherwise I'm fine on all electrolytes).

And for your next visit (every 2-3 months is quite reasonable at this point), ask and if necessary, tell your doctor not to touch your kidneys. There is no need for anyone to go poking and prodding our cystic kidneys. All they manage to accomplish by doing so is induce pain and possibly rupture cysts. My nephrologist is absolutely adament that no one touches, palpates or otherwise manipulates the kidneys or liver region of his PKD patients (he's the chief of nephrology in a teaching hospital, so his "rulings" carry some weight). He's seen too many of his PKD patients end up with ruptured cysts and in pain as the results of other doctors doing what would be considered a normal check of the kidneys. We don't have normal kidneys; we have very cystic kidneys and those cysts are single-cell walled entities that can and do ruputure very easily. We should never feel pain or discomfort after a simple medical exam, and definitely not be sore the next day from someone palpating the kidneys. So hands off needs to be the motto. I know others will disagree and will tell you that even their PKD specialists will palpate their kidneys. I'm just telling you my experience and what my nephrologists uses as a rule. No touching equals to doctor-induced cyst ruptures. If you want to "see" the size or shape of the kidneys, order an ultrasound. (I really like my nephrologist; he's very protective of all his patients and hasn't forgotten his roots so he still practices internal medicine for some of his patients, as well as nephrology for all of them. It's nice to know I'm more than just a set of kidneys and a liver to him; I'm a whole person.)

I keep forgetting that I put together a kidney primer that talks about kidneys, how they work and what some of the labs are (not what the normal values are, but what creatinine, BUN, and the electrolytes are and why they're important). It's was going to be part of a series on kidneys, PKD, etc, but then life got in the way. Very little of it is original; I just compiled it from other sources, but it might help explain how kidney are supposed to work and why your doctors order those specific labs. If you (or anyone else) would like a copy, please message me within Daily Strength and include a regular email address and I'll be happy
send it to you (it's a pdf file).

There's also a good paper that's a bit technical that's referenced in a recent post (I think the post is called "Great PKD reference"). It's a National Institutes of Health reference on PKD written by two Mayo PKD specialists, one nephologist and one geneticist.

I'll cease ramblings for now. I have tons of other PKD references and everyone else here is a fabulous reference as well (we all have our own experiences with PKD, so you'll get the full spectrum of personal experiences as well as scientific references). You've come to a good place.

Best wishes,
Ruth

thank you for the welcomes, everyone, and for the advice. it's good to hear. I've always been low thyroid and hypoglycemic, with a high need for protein, and for something that broccoli has in it-I have the bitter gene, but both need and adore cooked broccoli. it will be interesting finding a good diet. living in the NW, we have short growing seasons and getting a good range of fruit from October on is nearly impossible. so after looking over my choices at the grocery store yesterday (oranges, expensive cantalope, grapefruit, red grapes, and apples, some wilted strawberrys, maybe some bosque pears, I opted for a bag of frozen fruit. maybe a bit pricey, but a good selection of fresh frozen fruit. veggies...having the bitter gene, I'm not too hot on veggies, but I make myself eat a bare salad now and then, and occasionally let myself have some dressing. I try to have at least raw mushroom and tomato in my salad. cannot stand plain lettuce. I do like legumes a lot, but I'm not good at preparing them. lazy cook, and forgetful. but learning to cook mediteranian correctly, well maybe someone on Freecycle's cafe in town will take me under their wing. I'm not much of a cook, and certainly like it simple in every way. I've just stopped eating fat. I have eaten fat rind ever since I was little, my need for protien was so great. but I cut it from my diet a week ago. I will slip now and then with my diet, I've been able to eat whatever I wanted for most of my life. giving up chocolate will not be easy. I assume tea is probably off the list, since coffee is. well, maybe not the decaf type. but tanic acid and I aren't very happy with one another, so that's fairly easy-is it only in hot tea? I don't taste it in iced tea. while I'm on the subject, I need electrolites in the summer, but the sports drinks are too salty and my ankles swell. what's a healthy alternative that still gives me fluids and electrolites?
I hope to be able to afford a Wii and some exercise games, it gets too hot for me in the summer and too cold for me in the winter to walk regularly. my doctor told me I have...well, it's a long word that means my extremeties "shut down" to keep my torso warm...as it is, it doesn't stay warm enough for my liking. so I'm really sensitive to temperature changes, and I make that my excuse not to go out and walk. but I do garden a lot, even in extreem weather-except snow, of course.
I'll try to get copies of everything. I've had two labs so far, one ultra sound and they want an MRI.
I do remember being told that my potassium was fine. in fact, it gets low sometimes, which makes me keep bananas and avacados around and occasionally cantalope. there's one other thing high in potassium but I can't bring it to mind. might be grapefruit, which I detest. too bitter. or potatos, which I love but always sticks in my throat and makes me cough.
I'm sure that when the emotions settle down I'll be able to ask some lucid questions. and perhaps remember some more of what I was told.
no, we can't keep doing whatever we want. oh, I like mediteranian food, but I will miss some of the things I have enjoyed in the past. balancing my issues and my diet is going to have to be with a very fine fulcrum. to have two such opposing issues is troublesome. fortunately, I've never needed or wanted salt, and am finally remembering to ask for unsalted food when we eat out. that's probably been a blessing. I don't cook with salt, or use a tiny pinch for a whole roast. we have a NewWave cooker, so the meat does not cook in it's excess juice and a lot of natural salt or salt additives end up in the tray. that goes out to the wild things in the area. I can't live on salt free peanut butter sandwiches for lunch every day, but I've no idea what else is available. I've been looking for months. salads don't do it either. I can't keep going on salads. something that is simple, I hate cooking for lunch. also, the new diet is more expensive than the old one, and we're barely making it on retirement. it's just frustrating.

This time of year you have squash of all types readily available, along with limited fruits (apples and pears primarily). Broccoli is year round since frozen is just as wonderful as fresh and is fabulously healthy for you. And don't forget brussels sprouts! If you don't like them now, try baking them in the oven at about 350 for 45 minutes, after rolling them in some olive oil and sprinkling them with rosemary. They come out a bit crisp and carmely and all wonderful. Put in some onions and garlic as well (also rolled in the olive oil); they bake up great too (and the garlic will keep the vampires away!). For grains, try some different types of rice, couscous, etc.; something more substantial and with more fiber than Minute Rice.

A good food cooperative can be your best friend in these cases and have good prices and generally only carry what is in season. It may feel a bit hippyish to walk in, but they're bonafide stores with bargain rates and quality products.

Coffee and chocolate. You don't have to eliminate these from your diet. Most PKD specialist believe you can still drink a cup or two of coffee or tea (caffeinated) each day. I know I do! And I enjoy a variety of herbal teas, being careful to read the labels and avoid a few ingredients, grapefruit and licorice primarily (grapefruit can interfere with some medications and licorice can increase blood pressure).

Cold hands and feet: Raynauds Syndrome? The best way to prevent this is to bundle up before going outside. Wear layers, gloves inside mittens, etc., and do not take them off till you're back inside again (inside an unheated car doesn't count). My fingers will blanch to white if I walk from the door to the car with only gloves on in chilly weather, let alone cold, so I've discovered that if I wear glove liners, then gloves, then Gore-tex mittens over those and don't take any of them off till the car is fully heated or I'm back inside, I can usually avoid the pain (live in the Washington DC area, but also found this worked in Colorado and Norway...even had problems with it in Florida!). Same goes for the feet, lot of layers. And when you're outside walking, be sure to keep swinging your arms; it helps keep the blood circulating. And always, always wear a hat; it really does help keep the heat in. To help when inside, use hot mitts when moving things around in the fridge or freezer to avoid getting your fingers too cold and carry a pair of gloves with you year-round so when you go grocery shopping you can reach into the cold cases for refrigerated and frozen goods without pain. I know it looks funny to be wearing gloves in the middle of summer, but at least I walk away from the frozen food case without pain!

The MRI is probably to look at your brain to rule out aneurysms, a possible complication of PKD. It's a noninvasive test; you just lie in a long tube and listen to very loud magnets and hopefully some good music for about an hour. As long as you're not claustrophobic, you should do fine (it's a narrow tube, but only your head is in it; the rest of you will be sticking out).

There's a good cookbook you might want to try called "How to Cook Everything", by Mark Bittman (check second hand bookstores or look for a paperback copy). He discusses all sorts of techniques for cooking in very simple ways, ranging from broiling, braising, roasting to much more complex options. There are at least 1000 recipes in the book as well as many alternatives ways to use each recipe (options for using different spices, ingredients, etc.). It's a good all purpose cookbook and you'd find it helpful as you start down the road of exploring new foods and new ways of cooking. Plus he emphasizes fresh whole foods and plenty of herbs instead of salt, so it's just the kind of cooking you want to focus on.

Just remember a very important motto many of us have: ALL THINGS IN MODERATION! There is no right or wrong way to do things, there are no right or wrong foods to eat, there's no penalty for drinking a cup of coffee or enjoying that decadent piece of chocolate on occasion. We're human and we're meant to enjoy all things in moderation. Just take your time and adjust accordingly. If you try to do everything all at once you will probably be incredibly frustrated and end up mad at everyone, most of all yourself and that's just downright counterproductive. You've already made some good changes, so take your time as you make more. This isn't a sprint; it's a life-long marathon so slow and steady really does works best.

Lots of hugs,
Ruth

thank you, Ruth, that's some great advice. I was out today and noticed two things. I ache. just about everywhere, and it was difficult to keep moving. and my kidneys are truly tender. not all the time, but it's noticable when it happens. I am possitive that I do not have Reynaud's syndrome. I did check it at Wiki. when I was reading up on Hashimoto's Thyroiditis. I do get very cold (or hot, for summer) in our uninsulated house, but don't have quite the reaction you do. in fact, 3 years ago my car couldn't take the snow storm and I walked half-way home, about 4 miles, in a down coat and gloves and muckluk boots and was fine. how quickly things change. I'll have to get the word from the Dr. it's a long, tounge twisting one, everyone has it, it just is really strong in some people. I'm going to order How to Cook Everything, and also a book I found at GNC today. Prescription For Nutritional Healing. you're right, I should take it slow, it's like starting up running. but part of me is aware that I need to get going. I was tempted by a number of things at GNC but I'm short on money at the moment so will see if I can find the book discounted online and wait for the cleansers and specialty drinks/tabs they have.
Coffee, though I love the flavor, makes me very jittery, so that's no problem giving up for me. I eat way too much chocolate, so that will have to be cut back on.
yes, that is indeed why my doctor wanted the MRI. there's no history at all of aneurysms in my family, but with PKD one can never be sure.
what do I do abt the kidney's hurting? it's not debilitating, just uncomfortable.