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Kidney Disease
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Any Advice?

Hello everyone,

I'm new here and just wanted to ask for any advice that anyone has. To give you a brief history of my condition:

When I was about 3 years old I got E.coli. I don't remember it but according to my parents I had almost, if not complete, kidney failure. I still have scars on my stomach from the catheters and whatever else I was hooked up to (I'm assuming dialysis). I'm told I have or had Hemolytic Euremic Syndrome. For whatever reason, the higher powers above or the scientific miracles of mankind, I came back from it and was able to grow up with a normal childhood. I never took any medications or had to see any doctors growing up.

It wasn't until I was 16 years old that I went for a regular doctor checkup where they discovered my blood pressure was at about 190/100. They did tests and found that I had Kidney Disease. I was told to take blood pressure medications and it was left at that. My blood pressure returned to a normal 120/80 and I met with my nephrologist about every 3 months. My creatinine levels was 1.5-1.7 from 16 years old till about 26 years old when it started to increase.

I am now 29 years old and my creatinine levels have been increasing steadily for the past year or two. I just met with my nephrologist today, and my creatinine levels have reached 3.1 and my GFR is about 29-34. My nephrologist says that is almost time to start looking at my options as far as dialysis goes, as well as a transplant. I always knew of my condition, obviously, but I never worried about it. Now I'm starting to get scared. Everyone my age is getting married, having kids and buying houses while I am now having to deal with this and I'm terrified of what my next few years holds.

I'm asking for any advice on mainly eating habits for Kidney Disease patients. I have met with a dietitian as well but it's hard to remember everything they tell you. They tell me to stay away from high protein, dairy, red meat and anything with phosphorus. Are there any recipes or sites to look at foods so I can try to slow down the disease as best I can?

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Hi,

I see that you live in the USA. May I suggest you go to the davita.com website and register for a free 90-minute Kidney Smart class in your area. This will explain all of your options and provide you with a wealth of information on where to go from where you are and how to slow down the progression of CKD. Also, on that website you will find a tab for Recipes. Look that over and it will provide you with many meal options. Don't take any of the recipes at face value. You can and should modify those to meet your tastes. For example, I have to watch my sodium so any mention in the recipes of salt, I disregard or use a salt-free substitute for flavor. You can substitute any seasonal veggies with ones in season if you like a meal.

There is no reason, that you mentioned, to prevent you from living a normal life. It's just going to be a normal life with you having HBP and CKD. I have both, along with T2D. I'm taking a long trip next month to Colorado and going hiking in the Rocky Mountains and I bought an extra memory card for my camera to handle all of the photos I plan on taking. I haven't slowed down (much) but I have gotten a lot smarter in dealing with my health issues.

One final thing. Make sure you learn all you can about your health issues and put together a Care Team of professionals (physicians, renal dietitian, pharmacist, significant others) that will provide you with the best medical, health and nutrition information they have and then support your decision, whatever it is.

Best of luck.

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Thank you!

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Hi BlueComet,

You have been through a lot in your short life. That makes you a warrior and that same strength will see you through to old age even with CKD.

I check almost all of my foods that I eat. I use a tracker and planner so I know what my day will look like. I put down EVERYTHING that goes into my mouth so I now really what I am consuming. After a while, you will learn what you can and cannot enjoy and it becomes less tedious and you don't have to track anymore. I lost weight doing it and then stopped for a while and so did my weight loss so now I am doing it again. I try not to be consumed with this diet, but then I am a foodie and love to cook and bake. So I guess I am consumed.

I use currently Davita.com tracker because I have programmed the levels I want for sodium, potassium and phosphorous. It is pretty simple to use. I also agree with Mr. Kidney that I do not like their recipes as such as they are not always the best. Too much sodium and potassium. I use a lot of my own recipes and modify them because I check each food item and know what I can or should have.

There is a lot out there on plant based eating. I do not eat any red meat and have cut down chicken and turkey to once or twice a month. I eat an abundance of salads, but I love lettuce. So much, I grow my own and I am talking red and green leaf. I fancy my salads up with things like apple, craisons, shrimp, eggs and cheese. I love cheese and I do eat it but I track it so I know how much I can eat in a day.

I am not sure if your dietician told you that plant based phosphorous is only 50% absorbed as to other sources non-plant based. So for example, phosphorous from meat, 100% is absorbed. Phosphorous from lentils, 50% absorbed. But lentils are high in potassium as are other bean sources such as hummus and cannellini beans.

renvela.com/Docs/pdf/Phosph...

Here is a simple plan to start:

1. Eat out infrequently. You have less control over your food choices.

2. No fast foods

3. No process foods such as frozen dinners or packaged products

3. Less meat the better, chicken and fish still have high potassium, eat sparingly

4. 1-2 cups of coffee and use real creme not non-dairy (I use CoffeeMate's Natural Bliss)

5. Lot's of water up to 2 liters unless told by the doctor to drink less or more

6. Incorporate more whole foods in your diet: vegetables and fruits

7. Little to no alcohol especially beer One glass of wine might be ok

8. Cook without salt. You will get used to it and then eating stuff with salt will taste bad

9. Do not take supplement, OTC drugs or other without checking with the doctor first.

10. Take cooking classes if available on kidney diets. There are classes on the intranet as will as maybe by your local Kidney Foundation

You are not alone and you can do this. When I was diagnose with stage 4, they told me to prepare for dialysis. I have maintained my lab values for over a year now and actually increase my GFR slightly and brought my iron up to normal by changing what I eat. My potassium and phosphorous have remained stable.

my.clevelandclinic.org/heal...

kidney.org/atoz/content/Das...

And last thing... you may want to gt a peer mentor, someone who has walked the walk, to talk to directly. Here is the information. It is free and I highly recommend it.

kidney.org/patients/peers 855-653-7337

Let us know how else we can help

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Thank you so much, your advice helps a lot

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Hi,

Same shock here, i am 27 years old with same GFR, i am trying to manage it with diet and some med, but it hard when we think about the coming year, what to do, i am sure that you have planned for better, but CKD make it unclear how you should plane your life, my hope that science will find the way to stop the disease, as we are still using the same treatment since 70's and 80's.

i would recommend you to join a facebook page "natural kidney journey" a lot of tips and success story.

Hope you all the best.

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I'll check that out, thank you

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I would take what you read there with a grain of salt. There are a lot of "plans" out there, but they must be ones that fit your needs. Do a lot of research and educate yourself so that you are able to choose a plan that is best for you and, most important, one that you will stick with.

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Just saw Ur sit n Mr Kidney advice, which is best. However I'm also in a similar sit as you, with high potassium as an extra, I'm 70 downside of the hill. But but I have remained focused n brought down creatinine, uric acid , potassium IL retest this month. All I did friend was to control my diet n what to eat n remained happy. Important have friends ,watch what u eat n drink do yoga! It's you yourself that's the power in you, ie have faith in yourself.. luv regards.

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I agree that Mr. Kidney and Bassetmommer have given the best advice. Like Raji838, I am over 70, and in 1 1/2 years brought down creatinine and improved egfr almost 20 points by controlling salt, potassium, phosphorous and protein. You have some experts responding to you and if you want to know about what they have written in the past, just click on the circle next to their name, on the left side, above their reply.

Good luck!

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You have received great advice. I will say though that transplant referral cannot begin until your eGFR is 20 or below. Dialysis generally doesn't start until your creatinine reaches 10. Its important to preserve your residual function as long as possible so consult your physician about this. A great tool is online modules at kidneyschool.org and the very best book called HELP, I Need Dialysis! This was written by Dori Schatell and Dr. John Agar. By far the best book on dialysis. Its only $6 and worth it many times over. If you have more questions just ask. Mr. Kidney, bassettmomer and others have great advice as pre and current dialysis. I've had CKD for 40 years, dialysis 17 years and still kickin it. More questions, ask away. Blessings

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I couldn't agree more. I don't often suggest reading books but this is one I have mentioned in this community before. "Help! I Need Dialysis..." is the best when it comes to understanding dialysis and what your options are. While not being technical it offers all sides of the modalities available to the patient with the understanding that it's up to the patient to make the choice that best fits into their life and the style they want to move forward with when the time comes. When you have CKD but are not immediately facing dialysis is without a doubt the best time to consider your options. Waiting until you are both physically and emotionally hamstrung is not the time to chose.

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Hi, BlueComet,

You have to educate yourself about CKD and do all the work yourself. There are no shortcuts.

Since you shared your whole story with us, here is my whole story WITH the resources you are looking for. Let me know what you think. I know this will help you. Good luck.

healthunlocked.com/early-ck...

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