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

As I was reading your first paragraph I was thinking, "I wonder if she meant 'Failure to Thrive' ". What a terrible term to call a disease "Waste of Life". I think your point about the good old fashioned docs is well taken; my primary care is, in general, a rockstar. He did not, however, mention that my kidney function had been in decline until he was "alerted" when my laboratory flagged my GFR at 59. It fluctuates from 53-64 ish but had that one point (from 60 to 59) not occurred, I would not have known about my declining kidney function. I believe whole heartedly that this has to change. Declining kidney function needs to flagged and addressed far earlier. This is a fight I wish I had the energy to pursue.

Sadly you are completely correct about addressing declining kidney function as soon as your blood test shows it. In another post from me I said the same thing. I had CKD3 for some time and I only found about it on my after visit summary. I was shocked. I loved my GP (she has since left the practice for taking too long with patients). Really??? Anyway, I think the first blood test showing it was in 2018. So for about possibly a year or more I didn't know I had it. If I had I would have been changing my diet so much more. I do think that lowering my salt intake so much that my blood pressure has been wonderful and that's a big help re kidney issues. Actually 59 to 64 is very good and I hope you can keep it at those levels. Thank you for sharing and I do agree with you as to "Waste of Life". Such a scary name.

All of us with CKD 3a-3b seem to be having a similar experience. Our physicians aren't very concerned and often
tell us nothing very helpful. Sometimes, they tell us nothing at all. As patients, we become our own physicians.
I don't understand this situation and have commented on it previously. We should be responsible individuals, but we require the appropriate help and information. Can someone explain what's going on? If you don't want to
help, why become a nephrologist? Very frustrating. Very puzzling. I wish us all the best. Don't know what else
to say. Makes me feel a bit better to know others have had same experiences. Is this state of medicine in America
today? And if it is, why?

Because of having a very rare blood disorder, I’ll be 1 out of 3.5 million people with it. That means there is only about 340 people in the United States that will have it, if they get tested for it. The official name is Waldenstrom Macroglobulemia, which is already a rare form of Non Hodgkin’s Lymphoma. So my 6 doctors believe my WM has set up a home in my brain causing a tumor. I have to get 2 CT scans on the 24th and 3 MRI’s June 22nd. If that isn’t bad enough, they believe the tumor is the same kind that killed my sister in 1989 at just 39yo. It was a rare tumor called Anaplastic Astrocytoma. My poor kidneys can’t keep up with all the bad guys setting up shop all throughout my body. My last blood check had a reading of 38 and was still tanking towards dialysis, so I’m literally falling apart but still fighting. My favorite quote “I cried because I had no shoes, till I met a man who had no feet.” Things can always be worse. I came into this world with a sickly body and I’m going to leave still in it.

@becky1024 I echo what @nscappa has said, in that we are here to support you however we can. I also have an ultra-rare health condition, involving my kidneys, and have found that working with my doctors, doing my own research, and being "part of the team" helps me.

Dialysis typically is considered as a person gets towards 10% function, except in cases of sudden kidney failure. Gentle exercise, good healthy eating [low/no sodium, careful with potassium and phosphorous] stress reduction however you can, all can play part of keeping yourself as healthy as possible. Learn your lab numbers, watching trends not single results will give you good guidance. Many times declining kidney function comes on slowly, and our bodies learn to adapt to it, so it takes us by surprise when we realize how we may be affected. I feel fairly well at 13% function, but in looking back, I know my energy and "usefulness" used to be better. Now, add in my other health issues like being an active cancer patient on chemo, and I am reluctant to put all the blame on my kidney issues.

I do hope we can offer you support and ways to handle all you are going through. Have your doctors found any link to what your sister went through, and your case, to help you now? You have about three weeks before those tests, how will you handle your time and emotions? Have you thought about writing it all down, keeping a journal to sort things out? We are here for you, please lean on us!
Ginger

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.

Hello Susan, I can relate so well to your response. I was caught by surprise ,as well, by my CKD Stage 3 diagnosis. My doctor sent me to a dietician but I think she was more qualified as a diabetic nutritionist since she didn't share my concern about a kidney diet. I have had diabetes Type 2 for 44 years and have managed it pretty well but was still surprised to get the CKD diagnosis. My doctor suggested a low potassium diet since my potassium was 5, a little on the high side. I go to get my six month labs next week and am anxious to find out my GFR. I will check back in once I have the results. It's helpful to know there are others fighting the same issues I am.

All of us with CKD 3a-3b seem to be having a similar experience. Our physicians aren't very concerned and often
tell us nothing very helpful. Sometimes, they tell us nothing at all. As patients, we become our own physicians.
I don't understand this situation and have commented on it previously. We should be responsible individuals, but we require the appropriate help and information. Can someone explain what's going on? If you don't want to
help, why become a nephrologist? Very frustrating. Very puzzling. I wish us all the best. Don't know what else
to say. Makes me feel a bit better to know others have had same experiences. Is this state of medicine in America
today? And if it is, why?