Hi, tika!

Stop the Diet Pepsi immediately!!! The phosphorus will mess up your kidneys real fast!!!

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

there is no substitute for a healthy diet but don't make drastic changes unless your lab results indicate a problem. reducing sodium is a good idea for most people because our diets are often too high in salt. as Coach Richie says, stopping Pepsi is a good idea too. aside from the phosphorous it does nothing good for you. if you want something sweet try lemonade or ice tea instead.
when you cut back on salt you will learn to enjoy the taste of your food. there are many things you can substitute, lemon, lime, vinegar, hot sauce, garlic, herbs and spices.
our Alona (MsFur) started a PKD Recipe page where you can find suggestions, maybe add a recipe of your own.
welcome to our group and we look forward to hearing from you.

Welcome Tika!

Congratulations on your 30 pound weight loss; that's fabulous!

It sounds like you got hit from both sides in November with the dual diagnoses. I can't imagine what you've been through, but I do know we have other members who have been through cancer diagnoses and PKD who can tell you about their experiences.

Regardless of who is treating you right now, your doctors need to treat you high blood pressure. There are plenty of BP meds on the market that will get your blood pressure down without interfering with your oncology treatment. All too much damage can occur to your heart and kidneys between now and April if your blood pressure if left unchecked and out of control. 140/90 is too high, period.

As for the Pepsi, please do not stop abruptly. You need to taper off. If you stop immediately, you'll get a whopper of a headache due to the sudden lack of caffeine and that headache will takes days if not a week to recover from, the best treatment for which is acetominophen with caffeine. So instead, start reducing your Pepsi intake by cutting it by thirds every few days, substituting water for the Pepsi. As for the phosphorous in the Pepsi, it isn't going to harm your kidneys. In fact it never harms your kidneys; the efffect phosphorous has is on your bones. Your kidneys are the master chemists of your body and keep all of your electrolytes in balance. As they start to fail severely, your phosphorous levels tend to climb and that phosphorous will pull calcium from your bones, causing bone issues. Nonetheless, regardless of function, chosing water over sodas is always recommended; even healthy kidneys prefer water to having to deal with the chemicals and by-products in sodas.

As for the sodium, don't go for the salt substitutes (the fake salt), as they just have potassium in them and you don't need that much potassium. Instead try spices and herbs. There are so many blends that come in single serving packages or are available in the food court that you'll find something you like. And at home, that' the place to experiment. No salt when cooking; you just don't need it. Instead use herbs, preferable fresh (grow them on your window sill or outdoors in warm weather) or get them at the store. Some are better dried, some better fresh, but that bottle of oregano that's been sitting in the pantry probably needs to go; it's dead when you can't smell the spice (so buy the small containers even if they cost a bit more while you're still discovering what you like).

When you mention the "PKD diet", exactly what are you referring to? I ask because there is an extremely unproven diet/wacko website out there with that name which promotes a very dangerous alkaline based diet. The author has no nutritional training whatsoever and there is no basis for her dietary recommendations; the are not based in fact or reputable science. Please avoid and seek nutritional counseling instead. Her suggestions are just bizarre.

For most of us the motto when it comes to most things, food included, is all things in moderation. There is no dietary cure for PKD. No magic food combining, no proof that a vegan, vegetarian, high protein, low protein, no protein, all cauliflower, all cabbage, all anything or nothing diet will make a difference when it comes to affecting the progression of PKD. Eating healthy, fresh fruits and vegetables, whole grains, protein (be it fish, meat, bean or other forms), fats (a must, no-fat diets are dangerous; our bodies need fat for the brain and omega-3s, and vitamin E, Aand D), fresh water and of course, dark chocolate (good for antioxidants). Nuts are fine, in moderation. Ice cream is fine, in moderation. Wine is fine, in moderation. All things are fine, in moderation. You get the gist--all things are fine in moderation. The only thing you need to restrict is sodium (1,500 mg per day from all sources, which is going to be a change for you). Otherwise you do not need to restrict anything else like potassium or phosophorous; only make those changes when your labs and your doctor tell you to.

You have yet another language to learn, that of kidneys and PKD. But right now, just get copies of your labs and the imaging study that led to your diagnosis; you have other things to focus on. Just please talk with your doctors (oncologist and primary) about blood pressure management; you really need to get it down for you overall health. We'll talk PKD and kidneys when you're ready. Don't worry; we'll be here.

Best wishes and gentle hugs,
Ruth

PS I know a few 80-90 year olds with PKD who are doing just fine, a couple on dialysis (started in their late 70s/early 80s), one has had a transplant for 20+ years, and a couple with no problems at all. So yes, we PKDers live perfectly normal lifespans, even after facing other life-threatening illnesses. You're going to be okay.

thank you for all your replies and welcome.

Everyone's tips and pointers are great. I really appreciate the huge response.

Coach Richie, I only drink 1 small can a day usually at noon. I do not drink Diet pepsi all day long (my stomach can't handle it!). I do know its not good for me, due to the caffiene I will have to "gradually" wean myself down so I don't get a caffiene headache. It will take some time to get off the diet pepsi completely. I drink plenty of water throughout the day (probably 64-84 oz). It gets better from here on out.

Ruth - Thanks for the great info. When I cook at home for dinner, I do not cook with salt. My parents use "no salt" salt. Is that good?? Just as I did with the LA weight loss diet. PKD diet? I was just referring to other people's diet posts. I would never follow any gimmics and scams out there.

Thanks again Coach Richie and Ruth for your valuable info. Looking forward to hearing back from you real soon. Have a nice night. I am not feeling great today due to the radiation therapy for breast cancer. Thank god its the weekend. It will be a long March.

Jen

Hi Jen, My name is Norma and I have PKD. I am 67yrs. old, actually that a lie, I just turned 68 in Dec. but don't like to admit it. I learned I had PKD when I was 39 because my dad had it, thats when they told him that he had it. They told him he was going to die pretty quick, but of course he didn't and when he did die, it had nothing to do with kidney failure. I guess you and I have PKD type II, which normally doesn't show up in life until later. I had no problems other than high BP until I reached this wonderful old age last year. My kidney function dropped dramatically. I am now at 39% and holding. Please be positive and know that you have a lot of time before this thing starts to advance. I don't know what the stats are on people my age going into kidney failure, but I think it's pretty low, sure hope so anyway. So there you have it honey, a good future to look forward to! The only thing I should say is that your BP is not good and you need to be taking BP meds, or whatever your doc's deem necessary. I've had a couple hernia's in my belly, but no big deal. You have everything to live for and everything to gain. If you want to talk anymore to me, you can message me privately.
Keep up the good work!

Lots of love and hugs,
Norma...

thank you norma for those kind words of encouragement. I do see the doc on the 11th and most likely will be on BP meds at that time. I will be talking with her in great length when I see her. She knows I am still going through radiation (she's been getting my reports from Roswell park). I am alittle nervous about having to go through this and the cancer together. I know i have all you guys, friends and family to support me during this time.

Tike,
Read the label of the "no salt" salt your parents are using. Hopefully it's a blend of herbs and not a potassium mixture. If it is the latter, this is your chance to educate your parents about herbs instead of excess potassium.

Potassium is good for your body, in moderation, and it has been shown to help lower blood pressure (which is why you see it added to so many foods and thus those foods labeled as "heart healthy". But because it's been added to so many foods and you're going to focus on eating healthy with fresh fruits and vegetables, you run the risk of getting too much potassium if that "no salt" mixture is potassium based and used liberally. I'd much rather get my daily dose of potassium from fresh tomatoes and oranges, bananas and other fresh fruits and vegetables than some strange tasting "no salt" additive (my grandmother used to use one; I found it hideous).

It really is tough to cut out the salt; I love it too. But it really does make the biggest difference. PKD pateints are considered to be salt sensitive when it comes to blood pressure, so reducing your salt intake may well help get your BP under control (although you will probably still need medication to get it down low enough (120/75) High blood pressure and the use of BP meds are very common in PKD and hypertension is often the first symptom of the disease, usually seen before the disease is even diagnosed.

I'm glad to hear about your diet ideas; they're good old fashioned common sense. I just wanted to let you know about that site; the proposals are dangerous and and alas, there are people who are desperate for a cure and will look for anything that might work, no matter how outrageous it may be.

You have a lot on your plate right now. PKD is rarely an acute disease; this is a life-long journey and something you've had from birth. You only found about it now because someone went looking for something else and PKD turned up. Focus your attention where it needs to be now and as I said before, we'll be here to answer all your questions whenever you have them.

Lots of hugs,
Ruth

PS Chances are one of your parents has PKD; this is a dominant genetic disease (passed from parent to child and only takes one gene, like brown eyes). So if one of your parents has high blood pressure or kidney problems, that is probably your "PKD" parent. If your parents are doing well, that bodes well for how you'll do as well. :)

Hi - so glad to hear about the "no Salt" information. The next time I get out to my parents, I will check on the potassium ingredient.

Its interesting how you mention about heredity and PKD. I wonder if I got this from my father. He has not been diagnosed, or he hasn't revealed it to any of us. He claims that his blood tests are pretty good. He is doing pretty good so far - he is 67. Mom has rheumatoid arthriti - she is 67 and was diagnosed with that at age 60. . I wonder if my brother and sister have been checked. This is something I may have to check into. Can an Aunt, who just passed way from complications of diabetes/renal failure have been a carrier? I was wondering this?? Nothing has been said about her having PKD, I will have to check on this with my uncle when I see him next time (probably not until easter, he is in florida for a month - good for him!).

I remember the good old days when my BP was 120/80. It seems to fluctuate a lot when I check it. When I went to my work physical it was 110/80. I have been consistently 140/90 for the past 2 months.

Tika, PKD is hereditary but you can't get it from an aunt or even a grandparent, it is directly passed down from a parent. it can also occur spontaneously.
as to your brother and sister being checked, I believe "if it ain't broke, don't fix it". if they are healthy and their blood pressure is normal, let it be at that. that doesn't mean they shouldn't follow good health practices such as a low sodium, low fat, low sugar diet, plenty of exercise, drinking enough water, no smoking and all that.
Ruth is so right about the "no salt" products being high in potassium. that may not be a problem if there are no kidney problems but far better to use healthy, natural items for flavoring, lemon, lime, vinegar, herbs and spices and so many good things. my favorite substitute for salt is cayenne pepper (and I can hear all you people saying "I don't like hot food"). if used in tiny amounts, until you decide how much you like, it won't be hot at all but will provide lots of flavor.

Cayanne pepper...wow. I am not sure about that. I will give it a try.

Tika - Hi!! We are practically neighbors; I live just south of you in Arcade. Anyways, I've been diagnosed since I was 21 as a result of findings on an ultrasound done for something else!! I've had no problems until 2004 when I came down with preeclampsia when I was pregnant with my first son. Since then, my blood pressure never returned to normal. I'm still learning so much from everyone here! Neither of my parents had PKD that they were aware of nor did my grandparents. Parents are both deceased--mom at 68 from smoking related disease, and my father at 79 51/52 from heart attack. So, who knows...

Anyways, welcome. Have you met with a nephrologist yet????

Michele

Hi Michelle, you can call me Jen. Tika is my siamese cats name. LOL!!!

Arcade, we are neighbors. I have only lived in Cheektowaga a few short months, I live near st Joes. Its close to the hospital I work at (Millard Gates). Previously I lived in Lackawanna. I am originally from Angola.

Yep! I was diagnosed in November along with Breast cancer. I see my primary dr next week. I am sure she will refer me to a nephrologist and put me on BP meds. Are you on BP meds?

I just joined on friday. I was looking around for some support groups of PKD. Here I am. This is a nice site and learning everyday.

Today is the first day I didn't have a diet pespi. I keep hearing Coaches message in my head "too much phosphorus will kill the kidneys!" Not feeling too bad, yet! LOL!!!

Jen, Hi again. I haven't checked in for a couple of days. Sounds like your plate is full but it also sounds like you have a great attitude about it all. It must've knocked the wind out of you to get the news of both PKD and breast cancer; I'm sorry you have to deal with all of this.

I am on Lisinopril. I was originally on lobetalol (sp?) from 2004 during my pregnancy until about last July. It's doing a much better job managing my BP. Labetalol was "safe" during pregnancy and so I remained on that through my second pregnancy as well and up until last summer. My neph switched me last summer as he said it is a better drug for patients with PKD as it basically "slows the kidneys" down not making them work as hard. That's how I interpretted what he said...can't remember exact words.

How is it going with no diet pepsi?? I basically quit cold turkey last summer, too. All these years I've known about my PKD but it wasn't until I read on line that caffiene was a no-no. No doctor or anyone ever told me before. Frustrating.

Anyways, good luck to you. You've come to a good place. PM me and maybe we can discuss nephrologists.

Michele