Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Your potassium is on the high side at 5.2 and you do need to make some adjustments to your diet, but 5.2 is not dangerously high. Some simple dietary adjustments are probably sufficient to get your levels back in the normal range (watching the high potssium foods such as orange juice, tomatoes, potatoes, etc., will probably help more than the peanut butter and milk, which tend to be higher in phorsphorous than potassium) and as you've already seen, they've helped (to with the lack of muscle spasms). What we were trying to say was not to panic at 5.2; it's really not dreadfully high (panic levels, a term actually used by the medical community, are ~6.5 or higher).
A renal dietician consultation is an excellent idea and can help you develop a healthy diet customized to you and your current condition and labs. We're by no means saying not to follow this. It's a great idea and will help you find some new ways of thinking, new food plans, new ways of cooking beyond your traditional midwest cooking and help you understand all the elements that go into a complete and healty diet. Renal dieticians play a critical role in helping us kidney patients stay healthy and unfortunately not all nephrologists take advantage of their expertise and advanced training, so take advantage of the referral and make that appointment; you will learn a lot! A renal dietician will also help you learn what foods are high and low in potassium, phosphorous, sodium and any combination thereof, as well as what foods are actuall nephrotoxic (star fruit is definitely one of them; I thinkt there's type of unusual fruit, possible noni berry, as well). They have plenty of resources for you to take home and study as well as are a font of information. One of the things they will probably ask you to do in advance of yoru appointment is to keep a 3-day diary of everything you eat. Eat normally, nothing special and keep track of everything you eat. That will help the dietician determine if you care getting adequate and balanced nutrition and help you develop a balanced diet custom made for you, your particular situation and tailored to meet you likes and dislikes (no lima beans if you don't like lima beans...and I hate lima beans!).
Make the appointment; I think you'll be happily surprised by how helpful the renal dieticians are!
Lots of hugs,
Ruth
as my brother used to tell me, the dietitian will ask you what foods you like and tell you you can't have them. then will ask what you don't like and tell you you can have all you want.
peanut butter and milk, while moderately high in K, are also high in phosphorous which can be a problem for some kidney patients. if this is not a problem for you the protein and calcium may be of more benefit than the K a problem.
eating healthy when your kidneys aren't processing electrolytes fully can be a real challenge and one thats hard to figure out unless you get your labs done every day. one reading doesn't really say much except that is what your blood was the day it was taken.
this is not the time to be alarmed Norma, just time to review what you are eating and drinking and see what simple adjustments can be made.
Norma..
have I gone to a dietitian??????? my daughter is one. not only that but part of a workup for transplant is a visit to a dietitian. in one case I was given a diet that was so restrictive I was in tears. I was permitted 4 slices of white bread, 1/2 cup of veggies, 2 oz. meat and all the hard candy and unsalted butter I could eat. I was told it would help keep me off dialysis. hey, I would rather be on dialysis than die of malnutrition.
I showed the diet to my daughter who ripped it up (after noting it was from 1979) and got me a much more sensible one. she is not a renal nutritionist, but has access to the information. she was furious that I was given such outdated information.
its very easy to find information to INCREASE your potassium since many people follow such poor diets. trying to find ways to decrease it is not as easy.
generally, your body needs about 2000 mg potassium daily. sometimes in renal failure even less is better but that would depend on your lab values.
This formal event sounds like an evening in which you need to cut yourself some slack and just enjoy yourself and the luxurious, delectable foods provided. Then go back to being more cautious about what you eat the next day and beyond. Part of the motto "All things in moderation" includes enjoying those unique special events. Just don't come up with an excuse to make every day a special event or you'll end up causing yourself more damage in the long run.
Have a fabulous time!
Ruth