Second time around

By PAllen5

1 min read

I was "diagnosed" nearly 6 years ago. My eGFR was 48 and creatine was high. Went to nephrologist and they were not concerned at all. They said the usual things... drink more water, watch the salt, and avoid NSAIDs. She even increased my Lisinopril, which now my primary care doctor is telling me to stop until I see another nephrologist.

Will go next week. My numbers had dropped to 44 and potassium was slightly elevated. So is dropping 2 points in 6 years drastic? A few years ago I was told I could hover around these numbers forever with no ill effects. I'm 63 and otherwise healthy. I'm not overweight and I try to eat fish and veggies as much as I can. Just hoping I get good news next week. Thanks for reading.

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minel-cannucciari Community Admin
Hi <inline-mention username="PAllen5" user-id="8877109"/>, thanks for taking the time to share some of your story with us. Did you end up seeing another nephrologist? If so, what did they say? It seems like your numbers held steady for quite a few years, but can understand the concern since an eGFR of 44 is considered stage 3b (<a href='https://chronic-kidney-disease.net/stages' target='_blank'>https://chronic-kidney-disease.net/stages</a>). Thinking of you, Minel (Team Member)
Cinders Member
I’m no doctor but I would say going from 48 to 44 in 6 years isn’t bad. Lisinopril is a kidney protecting drug. It especially helps with protein spill. It sounds like you are taking a good approach on your diet. Eat lots of fresh fruits and vegetables and try to stick with chicken and fish like salmon. I know my nutritionist told me to stay away from all red meat it’s supposedly the worst for kidneys but you need to follow your doctors/dietitians advise. Of course if you are not retaining water then drinking your required amount is imperative. For me she said 64oz. I heard 1/2 your body weight. I know that amount for me is right then. I hope your next appointment is good. Make sure you write down all the questions you want to ask your doctor before going. I also record my doctors visit so I can listen back.
Diane Talbert Moderator & Contributor
Hello PAllen5 , Just following up to see how you are doing. I was told the same thing to drink more water and cut out salt. We would like to hear more about your journey. Diane (Team Member()
Cindy Barton Moderator
<inline-mention username="PAllen5" user-id="8877109"/> Just wanted to check in and see how you are. Any more word from your nephrologist? I’ve been a stable 3b for a year now. It’s always scary getting your blood drawn waiting for the infamous number we all hang out hats in. Hoping you are feeling well and trying to stay on a safe kidney diet with lots of water (as long as you’re not retaining/swelling). Please let us know. Cindy Barton (Team Member)
CommunityMember5412a3 Member
Im new to this all. I was diagnosed CKD 3b and type 2. Diabetes about Feb. Getting a nephrologist seemed like it took forever. This the doctor recommended to see but it's like pulling teeth to get one and see one. A good dietician is even harder. The dietician I finally got thru Florida Blue felt useless to me. I read more about CKD and what to eat or not eat than what the dieticians advice was. She insisted I eat more protein but that is the issue with my kidneys. I have too much protein in my blood. So no I will nov continue with her. All she said was to lower salt and drink more water. There's way more to it than that. My nephrologist said he's going to give me recommendation next visit. My first visit went well. Happy about that. Looking forward to a new dietician. Apparently unless you stage 4 many dieticians don't treat the earlier stages very seriously regarding what food you eat. But if you read a lot about it there are many articles about what you can of can not have. The diabetic diet and kidney diet cross over a lot but many things contradict each other. Bottom line fruits and vegetables healthy protein choices. Chicken and pork are really the only real meat sources allowed and then pork is questioned. I grill a full grill of boneless skinless chicken breast on the weekend. I cut the breast in half to make them thin. Makes a great sandwich or by itself with collard greens. I only have that type of protein once a day. According to the one dietician Its not enough protein but again that's my problem and why I'm stage 3b. So no I'm not going to follow her advice. She didn't even want to discuss my blood work. AND this is what folks that have had CKD for years say - you need to eat to your blood work. Meaning eat according to what your blood work says. If it says potassium is high, you have to eat less of that. It's the minerals you have to watch. Potassium, phosphorus, and I can't keep up with the others. But the blood work covers all these and will explicitly point out what is high, but you have to know how to read the blood work. That's what I've been working on since getting the advice I was looking for isn't really there. The internet is great but then you still have to take it all with a grain of salt. As everyone and his brother has an opinion as to what you should eat. When in reality it's very specific to you and your own numbers off the blood work. My biggest help was acquiring a counselor, but I have many personality issues that do not make life easy. Mostly having someone you can talk to that is in your corner is a huge help. 
1. Cindy Barton Moderator
 <inline-mention username="CommunityMember5412a3" user-id="9801194"/> Good Afternoon! I'm glad you have found us and you are here! You have done a lot of research and you know some of the things I know to be true. I will say you are so right there are very few dietitians out there that are certified renal and know what the heck they are talking about and add to that your diabetes it makes it even more complicated. If you can't find a certified renal dietitian in our area there are a few on Facebook and Instagram who are and one who I have actually counseled with. Lindsay, <a href='https://www.facebook.com/vitalkidneynutrition' target='_blank' rel='noopener noreferrer ugc'>https://www.facebook.com/vitalkidneynutrition</a>, is the dietitian I consulted with. Her page is very informative and she also shares recipes. These renal dietitians use telehealth/zoom for meetings. Something you may want to investigate. I agree with you on the protein there is a fine line especially if you are spilling protein. I spill protein and my numbers were quite high at 500. I only eat 3 oz of animal protein twice a week (boneless skinless chicken breast and wild caught salmon, no red meat ever that includes pork and venison) and I take 5mg of Lisinopril to help. I can't take anymore than the 5 mgs because I suffer with very low bp. Anyway, turning to a plant focused diet and only eating animal protein twice a week I have managed to lower the protein to 150! Thank you God! I was so thrilled to hear that my last visit and that I have been stable for a year now. Because of my limited animal protein I rely on tofu, edamame, lentils, quinio, beans, legumes, brown rice, whole wheat pasta, tempeh, and other things for my plant proteins. It's a learning curve for sure. I'm glad you found a counselor to help you wade through the emotions that come with having this disease plus someone to just vent too. Keep us posted on what direction you choose to go in and if you find a good renal dietitian who understands ALL your diseases. Keep fighting the good fight kidney warrior. Cindy Barton (TM)
2. Cindy Barton Moderator
 <inline-mention username="CommunityMember5412a3" user-id="9801194"/> just wanted to check in and see how you are doing. Have you found a good certified renal dietitian to help you with understanding a kidney diet and how to get good plant protein? Plant protein is so much easier on your kidneys over animal protein. Looking forward to hearing from you. Cindy (TM)