Told I had kidney disease at stage 3

Hi, I am new to the forums, thank you all for your kindness and information and compassion.

To me, the entire CKD “treatment” process seems to be inherently flawed. As I see it, It’s basically a non treatable, non reversible disease. Diet is very important, as are avoiding many things. Certain drugs may or may not help. There’s really no set protocol. Yet, incredibly, most doctors don’t even tell you about your eGFR and CKD until you are below 60 - stage 3. This, to me, is much too late. Why the heck wait until you are at Stage 3 to alert the patient to immediately make lifestyle changes ? ?

Then, most nephrologists don’t even want to see you until your eGFR is much lower then 60 AND you have other symptoms. For example, I just recently self referred to a nephrologist when my eGFR was 53. I get my eGFR tested several times a year or more and my urologist has NEVER even mentioned my eGFR. Why? It seems crazy to me.

From what I gather from my research, many , NOT ALL, nephrologists do not seem overly concerned about much, until eventually your eGFR and symptoms get to a point where you need dialysis. If that occurs.

My General Practitioner of 35 years told me last week “CKD doesn’t usually kill you, what kills you is cardiovascular issues from the CKD”. I responded “okay, if the CKD causes the cardiovascular issues that do kill you, then logically the CKD does kill you”!

As @gingerw said to me “ it’s a firehouse of information”. It is. Deciphering it is very difficult. Am I over reacting? Am I under reacting? I think I have to take this in stride, as I am early on in the CKD for now , thankfully, and live healthy and take each day as it comes. For me, that is much, much easier said then done. Thank you all for reading and for your continued support, and my continued prayers for everyone going through any health issues.

@ddon
Hi,
I'm past the worrying and am just mindful not to do anything stupid that can affect my kidneys.
I have just dropped to GFR39 at age 73. I'm pretty sure Autonomic polyneuropathy is going to get me way before my loss of kidney function will. I live by the colour of my urine, it tells me when I need to be drinking more or not so much and that is what keeps the kidneys functioning.
What you need to watch out for is Dr's that try to mitigate your health without consulting you. I have made it plain to my Dr's that won't happen without my consent, ask first. I usually make suggestions to my Dr's and they can agree or just roll their eyes! I do more research about my health issues than they do, so I believe I know as much or more about my situation then they know or appreciate. I find the younger Dr's are the ones more likely to want to do more as they still think they can cure the world. When they eventually find that I'm incurable and untreatable they drop me like a hot potato. I still haven't found out exactly why I get the symptoms I do but I'm getting closer, it is some sort of Autonomic problem caused by a serious bout of Campylobacter which very nearly killed me. Very much like long Covid can cause, except I predate Covid.
Cheers

@cheyne

I have had the good fortune to have helpful, educable doctors. Five years ago, my PCP referred me to Nephrology when my creatinine continued to creep up and was approaching 1.0. I am still seeing the nephrologist I was assigned to see. I always tell physicians that I can generally understand what they say and will ask if I don't. (I taught organic chemistry and took a fair amount of biology--a year of advanced physiology, a year of biochemistry (at a medical school where the university's Biochemistry Dept. was housed) and a semester of microbiology.)

I had a gazillion tests before a kidney biopsy revealed the problem. Even that wasn't easy--my sample stumped the lab at the HMO where I have been seen since 1978, was sent to the County hospital in Minneapolis and from there to the Mayo Clinic. A pathologist in the Nephrology and Hypertension Dept. at Mayo had the necessary test reagents and experience to decide my sample should be examined by electron microscopy. Apparently, the micrograph was the clincher--she'd published a paper on that before studying my sample. When my nephrologist received the report, he made a pdf and sent it to me via the HMO Patient portal. It was his and my first time to see the phrase Immunotactoid Glomerulopathy aka ITG.

I still have access to university library loan and used the web to research ITG. I found articles published by "my" pathologist and worked to get an appointment with the Mayo nephrologist who was a joint author on a few of those articles.

I was sent to see a hematologist next because of the approx. 100 patients who were found by a team led by my Mayo nephrologist, 70% have lymphoma plus ITG, 30% have myeloma plus ITG. So, I was tested for lymphoma (neg) and myeloma (neg). That means that I am one of about 10 known idiopathic ITG patients in the world.

Fortunately, the HMO nephrologist and hematologist were curious and educable. I shared medical journal articles on ITG with them. My hematologist decided to treat me for lymphoma, just in case, because lymphoma patients with ITG who have successful lymphoma treatment, are also cured of ITG. That failed for me. Next, he treated me for myeloma. He still doesn't think I have myeloma, but the treatment slowed the progression of "my" ITG.

The doctors have recommended against further treatment since 2023. It is an amazing feat considering the average time to dialysis for ITG patients is four years from diagnosis and survival on dialysis is only 3-5 years.

The downside is that my immune system stubbornly refuses to recover from the treatments, so I am either forced to isolate (which I've done since covid isolation started in 2020) or pick up one after another viral infection.

Masking with an N95 or N99 seems to be somewhat protective. (Although an Infectious Disease Specialist told me I must have gotten covid through my eyes on one of the visits I made to the local hospital where I was getting myeloma treatments.)

I have been able to attend St. Paul Chamber Orchestra concerts. I've successfully flown to HI and to see the grandkids in NC. (I get what they've got though.)

To echo your fine sentiment: Cheers!

@cehunt57 I also went from stage 4 to 3. It is such an amazing, life transforming thing. I hope that you can get a kidney soon and experience that healing again.

@faithfully123 Take a deep breath! I promise there won't be a test anytime soon, so you can absorb the information at a pace that suits you! We factor in our own individual circumstances, and realize that what is common for one person is not for someone else. And protocols we might like to look into cannot work in our situation. You're absolutely right, "take each day as it comes".

For whatever reasoning, many medical professionals don't seem to understand/want to deal with worsening kidney issues. Our kidneys are a real workhorse, and are vulnerable to malfunctioning from several fronts, even seemingly minor concerns! This is why we have to be our own advocates, and educate ourselves for our own situation. Be adamant is need be. We are the center of the wheel, and it cannot turn without us!

And my first nephrologist said the same thing your GP said! Well, here we are 12 years later, and yes, indeed I have the cardiovascular issues. Plus dialysis.
Ginger

@faithfully123 Gosh your post is exactly what I'm feeling. Five years go my doc told me I was Stage 3 at 56 gfr. She said it so casually I thought there must be a mistake. I saw a dietician, she said no more than 200mg per meal watch protein and salt. Watch it? What does that mean. A casual visit so I didn't take it seriously until now my number is 44 stage 3b. Now I'm on here and looking diligently at kidney cookbooks. Barnes and Noble has none.
Amazon does
In the meantime I am eating Greek yogurt and berries with walnuts, chicken or fish and veggies roasted and salads. With my own olive oil dressing
Only water no alcohol, for the last 4 months. From reading this forum and the casual doctors responses I'm in for a deep study, research and education ... So glad to find all of you! Thanks Donna

@ddon Thank you so very much for your response. I love these forums and the people on them. The feedback makes me know I am not “alone” on this journey!

The only thing I have had to drink in the past 2 years is water. Nothing else.

Through my research, my diet is much like yours, my protein is limited (0.8 grams per kilogram of body weight) and consists of egg whites, skinless white chicken and certain fish. Blueberries everyday, other fruits and certain vegetables and like you I have kidney friendly cookbooks and kidney friendly food charts. No cheat days for me. I relay all this to my urologist, and he literally just laughs, and says “ you should just follow a normal, regular diet”. Why would I do that? ? I have CKD. It is very frustrating and confusing.

If you have any questions, or want to share anything, feel free to contact me. I have plenty of time to research.

Prayers for you and everyone.

@faithfully123 It's very upsetting to hear a professional Dr laugh and say eat a normal diet. This goes to show western medical doctors know nothing about nutrition. A good registered dietician does. I do have a good one, still we must educate ourselves. I just bought Lee. Hull. Research and cookbook for CKD. The most comprehensive one out there Do you have it? Not only salt, phosphorus and potassium but acid/alkaline. Water is 7 PH.
I do drink a cup of. Coffee or tea each morning, I hope I don't have to give that up. What stage are you at?? Any other diseases? I have AMD, hypoglycemia and I see a chiropractor monthly. I like researching and learning. Good thing! Good talking!

@faithfully123 Yep, that is what my doctor told me, also, when he casually mentioned that my kidney function was sliding down. Immediately put myself on a renal diet. They kept telling me, "eat normal, you have nothing to worry about!" Nope, did it my way, and was able to keep my eGFR from sliding too fast. It was 10 years after going onto a renal diet that they finally did a kidney biopsy and found the cause is a very rare condition, less than 50 people in the world have it.

We have control of what goes in our bodies for food. Make it healthy, make it count! Diet is very important in kidney health.
Ginger

@endelfam
What was the blood pressure medicine that they had you to reduce?
I'm concerned that some of my heart/blood pressure medicines may be affecting my EGFR in a negative way...