What are things I can do to live well with 3b kidney disease?

Hi @dmccuen219. I'm so sorry that the diagnosis affected you so severely. Huge kudos on the lifestyle changes you've been making - it truly makes a difference in managing CKD. Do you know the cause of your CKD? Is it genetic? Diabetes or high blood pressure? Something else?

My first nephrology appointment was at a similar point in the disease's progression (I have PKD). The focus then was setting up a regular appointment for labs and making sure that I was medicated to treat the issues that accompanied the CKD. I was fortunate because my biggest issue was high blood pressure which was easily controlled (at least it was in my case). If your CKD is progressing slowly then you can focus on your energy level and - from what I interpreted in your comments - a general malaise and possible depression.

All of these feelings are 100% normal.

I attended a seminar put on by the Minneapolis chapter of the National Kidney Foundation and one of the most powerful sessions was on Grief. It hit me hard. Up until that point, I hadn't allowed myself to grieve for a "normal" life that didn't revolve around my kidneys. Recently - as I get closer to transplant - I find myself grieving my independence as I realize that while I'm beyond grateful to get this second chance at health, it comes with conditions (medication, risk of skin cancer, immunosuppression, etc).

It's a process and it's very easy to become overwhelmed. So as hard as it may be, stop and take a breath. You're doing all you can right now. Then in your appointment, ask your doctor what you can do to reclaim some of your lost energy. Are there other conditions which might be affecting it? Has your thyroid been tested? I've found that admitting to myself that I have to pace myself - while annoying - was helpful.

If you're depressed, see if your doctor would recommend a low dose antidepressant. Start building your support network. Yes, family and friends. But now you need a medical support network as well. Make sure your primary and nephrologist are supportive of you - and of each other. If you don't feel you're getting the support you need, switch doctors.

Yes, this sucks. But you can do it. Best wishes.

Thank you ! I was diagnosed with Lyme disease in January 2000 which lead to
failure of my thyroid I’ve been on various meds to deal with the Lyme Since
2016 my creatinine level has been increasing in small amounts until I
reached 3b in February I am a fighter and will keep changing what I need to
slow the progression Yes I am a little down and really sort of angry
Concerned about the progression and of the unknown

I was diagnosed with stage 3b CKD late last fall following a severe urinary retention issue that caused me to go into acute kidney failure. The urinary problem was resolved with HoLEP surgery, which seems to have worked very well. I have been seeing a nephrologist since January 2022 who is fairly closely following my situation--I see her or one of her staff every 3-6 months and report my blood pressure, etc. I am on several blood pressure meds or related meds, including losartan, chlorthalidone and amlopidine, and those are keeping my bp at around 118/76 which my doctor says is good. My creatinine is about 1.75, and my eGFR is about 45. These have been holding steady for 6 months or so. I eat a fair amount of red meat but in small portions, and small portions of rice, pasta and potatoes. I eat a lot of sweets but have cut way back in terms of portion and type. I drink a lot of milk. I still drink pop, but again have cut way back. I would appreciate any insight or advice as to what I can expect in terms of the progress of my CKD. I am 70 years old and in fairly good health otherwise.

Hello, my name is Nancy and I will be 75 in September. I have CKD3 and have had it going on 4 years. I was low in 2019 but my GP did not address it with me. I saw it on my patient summary.
I have looked into it on DaVita and this wonderful sight but only for the past year. I have cut way back on salt, watch for potassium, magnesium, phosphorus, protein, etc. My last GFR reading was 49 (up 5 points). I don't like not knowing where my numbers are now but I have to wait until August (6 months). Re your diet, I do not drink any soft drinks (phosphorous), very little milk usually only in oatmeal or an omelet, the sweets are difficult but I do try to be careful, I eat very little red meat, maybe a hamburger twice a week, I eat flounder for my fish. Salmon is quite expensive even though I love it. I do sometimes have Ritz with coffee but I am careful about the salt. Do you or anyone else know the maximum mgs daily for salt?? I'm sure I knew before but I forgot. I think I am way below this amount but I would like to know. I hope this was helpful to you. Good luck, Nancy

Hi, Nancy, thanks very much for your reply and information. It is very helpful. I believe my nephrologist said I should keep salt intake below 2000 mg a day. I use very little if any actual salt, but of course it is so many things we eat. So I try to stick to unsalted things, like taco chips with no salt, etc. Regarding GFR, I know my nephrologist said this was an estimate I think she feels as long as my GFR and creatinine is staying within a certain range, I am okay. So my recent creatinine numbers, went from 1.75 about 6 months ago, to 1.66 about 3 months ago, and then back up to 1.75 just a few weeks ago. So she thinks 1.75 is probably my number right now. Regarding diet, I eat more red meat than you, but way less then I used to, and keep it down to small portions--the nephrologist said to limit my red meat portions to the size of the palm of my hand. Good luck to you also!

Hi Paul,

Thanks for your reply. I have not seen a nephrologist as yet but I probably will some time soon. Re the salt intake, thanks so much. I rarely use salt for obvious reasons and I stay away from frozen meals, pizza, etc. Also, no canned soup. I do eat some low salt popcorn that I get at Stop & Shop. It really gets difficult to find snacks that are healthy for my diet. Last week I was a bad girl had I treated myself to a bag of russet chips and my God they were delicious but that's just a treat and I have only done this 2 times. What do you pick on??? I know about cucumbers but really? There are so many things to be aware of and it does get difficult at times. I do cook up some zucchini and summer squash and make an omelet. I'm up late so snacking gets in the way. Do you eat yogurt?? How about protein. I do eat fish such as flounder. Red kidney beans were recommended so I get them and soak the s___ out of them so there goes most of the salt and they have no flavor at all. When I eat a salad I do use a bit of salad dressing but very sparingly. What do you do for seasoning??? I had my last blood work in February and my GFR was 49 which went up 5 points. Re BUN and Creatinine I need to know more about those numbers. What is considered a good number?? I don't have it in front of me but maybe I will take a look and let you know what mine are. I'm talking too much. Again, thanks so much. Take care and I will probably be talking to you again. Nancy : )

Hello Nancy,

Start here: https://www.kidney.org/

You did not address me in your commentary, but I do have a few suggestions.

Give up meat and fish altogether. I do not eat dairy food at all.

If you want to eat popcorn, eat it with NO SALT. Not a little salt, no salt.

I soak rice to get rid of the arsenic, but I soak canned foods to get rid of the salt - and kidney beans are the only canned food I eat.

My story is like yours: my primary care physician did not tell me; I saw it on my patient summary. Every single step I have taken has been on my own. All my knowledge, and remediation efforts, have been a result of my own research. I don't mind doing that, but there is an ocean of information out there, and some voluntary guidance from your kidney doctor would be helpful and would inspire confidence that you are not making mistakes.

The first specialist I saw barely managed 15 minutes. They seem to feel that in Stage 3 you do not need to do anything, or change anything. This is ridiculous. That is when you need to get started with the changes that will slow down, stop or reverse your kidney damage. Why would you wait?

Early on, in that brief (ten-minute) meeting with a nephrologist, I got the advice that I would not end up on dialysis. Well, this is because of my age?

However, that does not mean I don't want to do everything I can to improve my kidneys.

Raised my GFRs, from the time I accidentally discovered I have the wretched disease (UTI medications), from 50 to 64-69 - depending, I guess.)

My experience with kidney doctors is that if you are in Stage 3, they don't offer a lot of guidance and I am aware that I need to look for a more involved physician. However, with the current method of referral's being required, that is not easy.

Most of what I have done, and learned, has been on my own. I am about to send off blood test results to Let's Get Checked, which gives me a GFR figure for the months between my first specialist appointment and my next appointment. I feel as if there is nowhere to go to get answers that will be individualized to your particular situation, since clearly, that did not happen with the first kidney doctor I saw. By the time I met the second kidney specialist, I knew the questions to ask. However, those have been my only encounters with kidney speialists. You are on your own.

I did fight my way to the hospital nutritionist, but you need referrals for that, rather than just making an appointment. You also want to know that the nutritionist is a kidney nutrition practitioner.

This blog is helpful and supportive. Gives you some insight into your condition and how to help yourself.

While medical care and knowledge is extraordinary, the personal touch, I believe, is less frequent in today's medical-care world. I am not a person who requires hand-holding, but I would like to feel as if I were not a number in the medical system, and that someone actually gave thoughts to how best to treat my specific ramifications of CKD after I left the office.

Did you change your diet? That is the key part of fighting CKD, especially in Stage 3b. You can slow it down, stop the progression, or reverse the kidney damage.

I am older than you. Shocked at my diagnosis - UTI infections - I raised my GFRs in 6 months. Went from a GFR of 50 when diagnosed, (3a or b) - diagnosis not definite), to 64 in about six months. Did I get depressed? Yes. Still do. But I knew I needed to do whatever I could to improve my kidney function.

You can do it too.

Read the blogs here, haunt Kidney sites on the web, (National Kidney Foundation for starters), and do the big thing for kidney health: change your diet. Do not eat meat, fish, dairy, or salt. Insist on a nephrologist who listens and seems concerned with your progress. The first kidney doctor I saw told me not to worry, I would not ever be on dialysis. That was about it - then he was out the door. I figured he meant that I would probably die before I reached the critical stage. So I set about repairing my kidneys: you can do it too.

Wow, so well said. You are well versed by looking for info where you could find it as I did. It's very disappointing that my GP did not make too much out of my CKD3. Even though she was a great doctor who gave me extra time (that's the reason she had to leave the practice, she took too long with her patients) I was very disappointed to find out on my own that I had CKD3. Any patient with any changes in their kidneys should be told about it and given steps to prevent the progression. I can't imagine how many other people out there do not even know if they have it or not. It is the silent disease but it doesn't have to be. I guess we have to find the information on our own. I did purchase an amazing book on preventing the progression of kidney disease and the author has kidney disease so he knows what he is talking about. I would recommend it to any one who has CKD. It is called "Stopping Kidney Disease - Basics, written by Lee Hull. You will learn everything you need to know even if at times it gets a bit overwhelming with the details but it is so very informative. Worth looking into. Well, stay safe and keep up the good work.

Nancy

I recommend unsalted Matzos as a base for jelly, peanut butter, unsalted butter, etc... I even use that for a version of french toast. Helps tremendously to reduce the salt load from bread.