Just join and stressed out

[LarryGee]

Hello I'm Larry just joined, this last two weeks I found out that I got stage 3B ckd. My primary care doctor she didn't really tell me had to do some research and had new symptoms that developed within this last 2 weeks and I went back to her at least three times,, the first time indicated that my blood levels were off the indicator for stage 3 was 40 and then I went back to her a second time the next week because I start getting side pain couldn't sleep on my right side anymore so have to ship to my left. The doctor gave me an ultrasound and all she found was a fatty liver my kidney was an obstructed it was clear but I've been having all these new symptoms bad breath dry lips kidney pain on both sides yesterday very mild pain but never less I felt it she also gave me another blood test and stage 3 level went down to 36 so I'm very concerned and stressed out and I've been dieting for last 6 weeks 7 weeks have lost approximately 15 lb and right now I'm not eating too much ,I'm five feet six and a half and I weigh 192 lb at this time I was at 208 when I started my diet so I appreciate it if anybody have any idea what I can eat, ,,, I've got doctor's appointment kidney specialist which I've going to see in two weeks waited aready 5 weeks when I see him,,hopefully he will be more hands on,,,read some comments that some doctors don't do anything but take ur blood,,,no dietitian to work with the doctor,,, so is there anybody out there with Stage 3B ,,,ckd that can give me information and what type of food I can eat in the next two weeks,,, I don't wish to destroy my kidney while I'm on my diet,, I'm totally stressed out,,,,got most of the symtoms that shows kidneys not working properly. Help I'm stressed out,,,

[cmaxwell78 NKF Ambassador]

Hey, Larry, I'm stage 3B as well, but I am 39 and I have known since I was 18 that I have the inherited form of Polycystic Kidney Disease. I recently discovered the Whole30 diet and adapted that to help trim off some weight. I ran it by my care providers and they agreed that a diet with a good amount of plant-based protein versus animal protein (especially red meat) would be beneficial for me. I stay hydrated by drinking plenty of water and stay away from salt/sodium in foods and drinks as much as possible to help out my kidneys. Remember, they are basically filters, so whatever you put in your body, has to go through them. Red meat and salty foods/soda/snacks are best to be limited.

Because blood pressure is a major symptom of declining kidney function, it's best to try and keep your stress to a minimum, as well, for lots of reasons! Hopefully, your care provider has taken your blood pressure and has suggested that you monitor this at home. Check with your health care insurance on whether or not they can help you get a blood pressure monitor for home use. Generally, a care provider can write you a prescription for one if your insurance requires this. (I suggest Omron as a reliable brand of blood pressure monitor.)

I hope this is some help! I'm not an expert, but I've lived with the knowledge of this disease through my family for my entire life, and for all of my adult life as a patient myself. There are a lot of resources out there for you to read - but I highly recommend not poking around on Google. As an Advocacy Committee member with the National Kidney Foundation, I would highly recommend beginning there as a trusted source of information: kidney.org/atoz/content/new...

Take care!

[LarryGee in reply to cmaxwell78]

Thank. U for ur reply , that helps,

[LarryGee in reply to cmaxwell78]

The whole 30 diet ??? How does it work? Will purchase the book but am curious how it works,,,have 2 weeks before kidney doctors appointment, so I will try this, I'm basically starving myself right now, which is probably not good for my basic health, Whole30 diet, is it a cookbook? Or how does it work, a prompt reply would be helpful and appreciated... thank you

[cmaxwell78 NKF Ambassador in reply to LarryGee]

I checked "It Starts With Food" out of my local library and read that. I followed Whole30 and Whole30 Recipes on Facebook and that proved to be a really great resource for helping me get through. I never - repeat - NEVER - felt starved. In fact, there were times I ate more than I would have when I was not on Whole30 and just trying to "behave". If you love fruits and vegetables - this is for you! There is no calorie counting or weighing (food, or yourself) just eating whole, clean foods. I found it easy since there is a clear roadmap in the book: eat these things, don't eat these things. Simple! Good luck!

[LarryGee in reply to cmaxwell78]

R u not concern about the potassium ,phosphate, and salt content in some of these vegetables and fruits,, i read some articles online and on devita that states shouldn't eat certain types of fruits and vegetables in stage3b ckd..that's high on these,like bananas, leafy vegetables,,,,thanks for ur input,,,and some additional comments,,,would be appreciated regarding my concerns,

[cmaxwell78 NKF Ambassador in reply to LarryGee]

My levels are fine and I only eat Vegetables and fruit higher in phosphorus and potassium in moderation. I recommend speaking with your doctor and for a dietician about what they recommend for your specific case.

[LarryGee in reply to cmaxwell78]

Thanks, for ur info,

[orangecity41 NKF Ambassador]

Hello Larry: I am 76 years old and diagnosed with CKD stage 3b over 1 year ago. I too had similar symptoms. Reason for CKD is organic. My primary Doctor put me on a "pre-dialysis diet" and exercise routine and I too lost some weight. My GFR level has stabilized and improved a bit, although getting some signs of CKD progression. Goal is to avoid dialysis as long as possible. I go to Doctor about every 4 months to keep tabs on CKD etc.

I think you should be able get more info from your from kidney specialist appointment.

.

[LarryGee in reply to orangecity41]

Thank u for ur comments, that's one of my concerns,,,just seeing the kidney doctor,,for blood test every few months and looking at the labs,,took me 5 weeks to get this appointment hopefully he's more hands on,since my primary care doctor, which I can see on the same day that I call, doesn't feel concern and that she says she has patents with my numbers doing fine,,,she nevee even told me I was stage 3b,,,I brought it up with her and she wasn't concerned,,,,hope she right,,,but hopefully the kidney doctor will see me 3 times the next two months with blood test to monitor me after my initial visit..otherwise i feel I'm on my own.

[Catmommy in reply to orangecity41]

What does it mean that the cause of your ckd is organic?

[orangecity41 NKF Ambassador in reply to Catmommy]

Hi Catmommy!

In my case the organic reason is bladder problems.

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Hi, Not quite to 3B yet, as I was diagnosed at Stage 3A. I've been on a diet and completely changed my habits about 16 months ago. So far I've lost 130 pounds. Doing this and then finding out I had CKD was a bit of a surprise but I checked on lots of sites and found the DaVita site and saw their recipes. This worked well for me because I can check which one are also good for Diabetes. I'm Type II. I had been on several meds for many, many years but recently my PCP had me stop them and go on diet and exercise only. It's been a month and so far so good. I was seeing one nephrologist but his unwillingness to answer my questions or even to inform me of my dropping GFR caused me to leave him and seek someone else. Hopefully that will be in the next few weeks. My PCP does the lab work and she seems knowledgeable about my health care and I'm okay with that for now. I'm continuing with the recipes on the DaVita website as long as they are Diabetic friendly. Doing more exercise and changing my lifestyle is helping but it's too early to know how it will change things.

[LarryGee]

Thanks for the reply, ,sounds like ur doing all the right things,,I too, will try to do this,,,hope my nephrologist that I see for consult,,and probably become my doctor, is more hands on,,,not just monitoring blood and leaving me on my own..