A little help

[Lexilou77]

I was just diagnosed with stage 3 ckd does anyone have any help ? I started changing the way I eat but I still feel helpless

[Hidden]

Hi and welcome to the community.

There are many things to do to help you begin your travels down this road. You've already taken the first step by finding this site. Lots of folks here will be able to help you along the way.

To begin, since you are in the USA, go to the davita.com website and register for a free, 90-minute Kidney Smart class in your area. You'll receive a lot of information on CKD and your options.

The DaVita website will also provide you with a lot of recipes for you. Just remember that none of the recipes should be taken at face value. Adjustments must be made to account for the results of the lab values you have and you'll need to make changes as the values change over time. There isn't much that is connected with a kidney-friendly meal plan that is static.

You didn't mention any other health issues but those need to be taken into account when you look at your medications, meals, exercise, and the members of your Care Team.

Make sure you always inform your doctors of your CKD status. Even your dentist. If you haven't yet seen a nephrologist, ask your PCP for a referral for one. Also, ask for a referral to see a Renal Dietitian. The RD will help you develop a kidney-friendly meal plan. Things you will have to monitor are sodium, potassium, phosphorus, protein, and calcium. You don't want to eliminate any of these but you will need to adjust menus to keep them in check. When you meet with the RD bring as many of your lab results with you so the meal plan can be tailored exactly for you.

If you don't have hard copies of your previous labs, ask your doctor's for them. If they are part of a large practice and/or clinic you can contact their Medical Records office and obtain them.

Something else to help you is to set up a spreadsheet to help you track your labs. Along the top of the sheet, list the date of the labs and the physician who ordered them. Down the left side list the test. In each corresponding box write in the actual lab values. If the value is within the normal range, it can be left as is. What I do is highlight it in red if the value is above normal, and a use a different color if it is below the normal range. This allows you to quickly see if any trends are developing and it zeros in on specific questions to ask your physicians. If you aren't sure of the abbreviations of some of the tests, use labtestsonline.org for an explanation.

I'd also recommend using drugs.com to check on any and all meds for interactions and problems for your CKD and other health issues. You can set up a free account there and get updates on issues that may come up with medications, dosages and even food issues with meds.

Make a list of all of your medications and dosages and bring that with you to each doctor's appointment and be sure they update your file.

I'd also keep a list of all your physicians and distribute them to each one along with contact information. You need to keep them all informed as to your health conditions. Keep all of your appointments. If you have a physician who won't tell you much or keeps you in the dark, find a new one. You must be proactive and in charge of your Care Team. If the doctor won't go along with you on that then replace them with one who will. It's your life and your health.

Stay proactive and take notes or bring someone with you to your appointments and ask them to take notes. If your physicians have a patient portal, use it. You'll find it a great way to stay in contact with them and get test results, ask questions and know when you need to schedule an appointment.

Come back here if you have any questions and don't be surprised if in the near future you'll be able to help someone new to this site.

[Lexilou77 in reply to Hidden]

I went back as far as 2011 on my labs that Is whn gfr started to decline but none of my doctors ever said anything I had to get an mri with dye and needed bloodwork I questioned the results along with back pain I was having and that is when they said I have stage 3 I also have high blood pressure with a torn rotator cuff and arthritis in my shoulder and neck.

[Hidden in reply to Lexilou77]

Many of us here have similar issues with doctors not being forthcoming with the information we need.

I've been through five PCP's, three nephrologists, and two cardiologists. I need the physicians to be open and honest with me but most of all accepting when I make the final decision regarding my healthcare.

When I said you have to be proactive I meant it. You'll be amazed at how quickly you can get on top of your health issues.

I also have Type 2 Diabetes, Hypertension, AMD and soon I'll be without a gallbladder to go along with my CKD.

CKD is progressive. There is no cure, no magic fix, just determination by you to controll your life and the choices to get you there.

[Bet117 NKF Ambassador in reply to Hidden]

Well said!

[Marvin8 in reply to Hidden]

If you haven't already, you might be interested to see these two websites with anecdotal evidence that ckd can be halted and sometimes reversed.

facebook.com/groups/natural...

dadvicetv.com/

[Hidden in reply to Marvin8]

I appreciate your directing this towards me, however...I don't do social media so I will not go to any place there. Regarding the second site. If your nephrologist is worth his/her degree they would be telling everything that was mentioned there except #5. Many supplements are designed to separate you from your money. I do take a few but every one of them has been recommended by my Care Team.

CKD affects 40 million people. Sadly, many of them don't know it, yet. What we do know is that CKD cannot be stopped, let alone reversed. What you can do is slow the progression. When the recognized medical community hails a breakthrough I can assure you that every newspaper, television and radio station will be broadcasting the news. Until then, if you must, follow your physicians' advice and avoid supplements unless and until your doctors give you the okay.

One final thing. Not everyone with CKD is due to hypertension and/or diabetes. Many folks who have CKD are also fit and eat a healthy diet. The second site was good, common-sense advice that will help some, just don't fall for the "...you can stop or reverse your kidney health..."

[Marvin8 in reply to Hidden]

Well, the first site was started by a guy who was on dialysis and reversed it to low Stage 3....or at least that's what he and his wife claim. They're not selling anything on their site and seem pretty knowledgable and genuine.They're pure vegan and supplement with amino acids. So they're either completely bs'ing for sport or they're being completely honest. I can't prove either. As for the second site, the guy seems genuine and passionate enough, but I do think he's got links to supplements on his site, but again, he either reversed his ckd or is completely BS'ing.

[Jayhawker in reply to Lexilou77]

I, too, found that my kidneys had been in trouble for at least 3 years before I was officially diagnosed with CKD.

Like Mr Kidney, I have shifted nephrologists recently specifically so I’ll receive care from a specialist who will support my involvement in my care, etc. I’ve also had to shift PCP too.

Have you been to see a nephrologist yet? If not, I’d strongly suggest that you do that as soon as possible. You need specific information about your renal function. Then a dietician can give you detailed help with regard to any dietary restrictions you should follow.

With hypertension, you’ll want to get that under control. That may require dietary changes and so forth. Hypertension and diabetes are the two most common causes of CKD. So getting either or both under control is very important.

I’ve become very proactive. I suspect you’ll need to do that as well. Let us know how everything is going.

Jayhawker

[Lexilou77 in reply to Hidden]

I did find DaVita and sat it I’ll check it out

[Bassetmommer NKF Ambassador]

Hi Lexilou and welcome,

Here is a little more information to get you going. 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.

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.

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 crème not non-dairy

5. Lots 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. Get Educated. Take classes on how to manage kidney disease. There are classes on the internet as will as maybe by your local Kidney Foundation.

Ask as many questions as you need. We are here for you.

[Lexilou77 in reply to Bassetmommer]

Thank u it’s just soo overwhelming and my boyfriend doesn’t seem to understand how bad it really is. I explain we can’t eat pizza , hot dogs etc I really started watching but I just wished I had support cuz I feel so alone with this

[KidneyCoach NKF Ambassador in reply to Lexilou77]

You CAN eat these foods, merely LIMIT frequency and portions. Have you tried kidneyschool.org as it's great at providing valuable information. Blessings

[Krazykatlady in reply to Lexilou77]

Let boyfriend eat the pizza, you get the salad. And chicken wings, of course! My fave!

[KidneyCoach NKF Ambassador in reply to Bassetmommer]

Its vital to remember that your list is for YOU but may not apply the same to others. Consulting with personal physician and dietitian about individual limits is key. What works for one may not or cannot work for another. For instance coffee with real cream may be adverse for many. You can eat out just be smart about it. But this is JMHO. Blessings

[Batsheva]

Hello and Welcome. Mr. Kidney seems to me to give you excellent advice and extensive knowledge. I am in the same boat like you. Diagnosed recently. I went into a very dark place but since I found a wonderful and encouraging nephrologist I feel so much better. I hope you can find a team that can help you feel mentally better. Sorry we all have to deal with this illness. Good luck to you!!!! BTW, there are tons of free kidney free recipes all over the internet and davita. They have the most delicious turkey meatballs with that sauce with grape jelly -- Yum . Take care dear. ALSO. THANK YOU MR. KIDNEY.

[jobeth]

A good resource is the book "Stopping Kidney Disease" by Lee Hull. He has done extensive research on what affects the kidneys. He has kidney disease and this is his journey to help himself before he progressed further. He just published the diet book that goes along with his book. I am on PD dialysis, but am going to try to follow the diet as much as I can along with taking the Albutrix tablets. My labs have improved since I started taking the Albutrix but I didn't take it all the time, or regularly. I have not been eating the best of diets as it is hard when everyone else is eating differently. I have decided that I am going to cook for myself and let the rest fend for themselves unless they want to eat what I am eating. I will let you know if my labs get significantly better. I also need to lose weight if I want to get on the transplant list. That is also one reason I will be following the diet.

[JimVanHorn]

Hi Lexilou77, I lowered my ceatinin level from 5.6 to 3.2 in abut 4 months by watching for Potassium, Sodium, only 3 ounces of fish or chicken, proper amount of daily water, Phosphate preservatives (no more 7-11) and eating fresh foods. That was 1 1/2 years ago but now I have a creatinin of 4.6, because I let some of those things back in my diet. So thank you for helping me see how important diet is in kidney dysfunction, You have to understand that "FOOD IS OUR MEDICINE!!!".