Can somebody tell me why CKD stage 3a or 3b is no big deal?

I have been part of kidney discussions here for a few years now so I am surprised to just be seeing this thread today. I am not seeing some of my experience here so I thought I'd share. The short version is that I am very fortunate that my health care providers have been very proactive and the chronic kidney disorder they discovered has been mostly been put under control.

Long version: My primary care medical professional, a PA, referred me to a nephrologist after looking at annual tests she'd ordered ahead of a routine physical exam I had when I was 68. She noted that my creatinine had been slowly rising for a few years and was now approaching 1.0. It took a few months and many tests for him to sort out what was wrong. A kidney biopsy was the turning point.

My biopsy was evaluated at my clinic's lab but then sent on to Hennepin County Medical Center for further testing. That lab forwarded my biopsy to the lab at Rochester Mayo's Nephrology and Hypertension Department where a pathologist (who happened to have published on the disorder she found) concluded that I have a rare disorder called immunotactoid glomerulopathy (ITG). I started reading the medical literature (I have still have access via the library at my old job) and learned that there are three types of ITG. Seventy percent of ITG patients also have lymphoma and 30 percent also have myeloma. So this is an immune system malfunction. My immune system was producing what I surmise are non-usable immunoglobulin G and lambda sidechains which end up being deposited on my kidneys (the pathologist used electromicroscopy to see these unique deposits). The deposits physically block my kidneys from being able to filter waste. They seem to be permanently attached or replaced as fast as they are displaced.

The hematologist I saw next had me tested for both lymphoma and myeloma and found no evidence that I have either one. (That result means I am one of about ten people in the world known to have idiopathic ITG--I've met three of the others through the ITG Facebook page.) I think he decided that just in case these results were false, he'd recommend I have treatment for lymphoma (since more ITG patients have that) with Rituxan--which failed to slow the progress of the ITG. Next, I was treated with Velcade/dexamethasone, which I found to be a common first treatment for myeloma.

My creatinine improved but the other troubling symptom, raging proteinuria is still problematic. Unfortunately, I developed peripheral neuropathy from the Velcade so that treatment was halted. I have been monitored now for almost three years. My numbers have slowly worsened so I am thinking treatment with a newer anti-myeloma med is likely to be recommended at my next appointments.

I believe that I have benefitted from aggressive evaluation and treatment, while I was in Stage 2, after my primary noted rising creatinine and referred me to nephrology. BTW, I am now also seen by a Mayo nephrologist who has published on ITG with the pathologist in his department who diagnosed my kidney problem.

My local nephrologist puts me at Stage2/3A since I don't easily fall in either category.

I’m finding that nephrologist aren’t kidney specialist’s there just monitors till you get to the stage of dialysis! Go to a functional Dr. and a nutritionist. Which neither one is covered by insurance. The system is rigged against you!

@mnsansei Well, thank you for sharing your story! My underlying kidney disease is also an ultra rare situation with less than 50 in the world diagnosed. I guess we get to be part of a special Club, right? Should we order t-shirts LOL

I am glad that you are comfortable with your medical team and the treatment options they have offered to you. I am also on treatment for multiple myeloma, but it has been shown that it is not part of my kidney issue, thank goodness. What will your plans be going forward, how will you be monitored now? I have had proteinuria since 1986, and they always attributed it to my systemic lupus diagnosis that occurred in 1988. I don't think there was a lot of concise testing done back then, and often have wondered if that proteinuria was really the start of my MGUS and the things that have progressed since then. Ginger

@gingerw I apologize for the delay.

I think the comment my Mayo nephrologist made at an early appt might work for our t-shirt. He called me his "one in a million patient." : )

I make separate quarterly appointments, usually within the space of a two weeks, with the "team" who are each able to communicate with each other as well as view each other's visit summaries, including lab results (which are not always in complete agreement--currently my HMO lab says my eGFR is normal while the Mayo Lab says it's low and has a different result) at both the HMO and at Mayo. I don't know if they are able to read all messages sent to me. My PCP _can_ read my HMO nephrologist's messages.

My Mayo nephrologist doesn't write prescriptions for me but instead makes recommendations that my HMO nephrologist has, I think, always concurred with. I suppose it's possible that I would have to make the 90 minute trip to Rochester to retrieve a medication otherwise.

I forgot to mention that only the Mayo nephrologist had heard of ITG when the pathologist report landed. I was impressed that my HMO doctors have revealed that they had never heard of ITG. Initially, I searched the literature for information and read the authors' conclusions as I have no experience with medical research design. As a chemist I have only meager experience with statistics. I should probably renew my search efforts now that I think more treatment is likely (soon).

This pattern was established in 2022. I occasionally ask for re-tests which are approved. I think I may be granted this privilege because, one time, the total volume of a 24 urine sample was off in the report by almost a factor of two. I had to re-do that one the next day which is too often for me. (The head of the HMO's lab and I had a conversation about the "hardship." I now put a magic marker line at the top of the liquid level and write the total volume on the container. The lab reports now agree with my volumes.) The HMO lab is willing to send a portion of the collected urine to Mayo as well as the tubes that Mayo sends to me to be filled at the HMO lab. ) I am a retired organic chemistry professor so I have taken analytical chemistry.

I tell my doctors about my educational background and assure them that if I don't understand, I will ask questions. (Not to bias or impress but to not be talked down to as I have read commonly happens to women.)

I went into acute liver failure from Tylenol. No alcohol, no history of fatty liver, or any liver problems. It’s not just the combination.

@amyb5 so what are we okay to take for back pain if NSAIDs, Tylenol and opioids are not recommended by docs ? What if we have osteoporosis and need calcium for bones ? And—-how do you maintain a healthy balance of foods if you have both OP and CKD (so far for me, both are mild) ?? Got to find the fine line to live well !

@nycmusic You're right, it is a fine line, and a challenge for almost all of us. What I can include on a sound lifestyle may not be practical for you. That is where the education and advocacy for ourselves comes in to action! And if our medical team suggests something that sounds counter-intuitive to what we think, at least listen to them and their argument. We have the final say-so in our care.

For me, I know that Tylenol is the only thing recommended based on Stage 5/End Stage/On dialysis. But there are times that simply doesn't work. So, Diclofenac sodium ointment is in my arsenal [Voltaren] which is indeed an NSAID. Even though it is topically applied, I am not convinced there is no absorption into my system. I take this into account. But seeing I am on dialysis for life, there is that fine line we walk to take care of ourselves.

We cannot nor should we, in my humble opinion, disparage anyone for following what may or may not work in their unique case.
Ginger

My GFR dropped from 27 to 21 recently. There are many aspects to maintaining healthy kidneys. Low salt, no NSAIDS, exercise, good diet, etc. I now know infection is a kidney killer and is not talked about enough. I had COVID, Norovirus, and a raging UTI that came dangerously close to full on sepsis. This was 2 weeks ago. I did not even know I had a UTI. A ambulance ride to the ED showed the infection was quickly turning to sepsis. It can happen in 12-24 hours. That’s how fast kidney function declines unless you address infection. My Nephrologist at Mayo said sepsis is the thing that scares her the most for her kidney patients. I’m saying be aware of the signs. Antibiotics cleared up the infection, but my kidneys suffered and we’re waiting to see if they recover. If not, I’m going on the list.
Kidney function often declines over time. The huge drops are what Nephrologists are looking for. If you can remain somewhat stable meaning up or down a few GFR notches. Potassium levels, proteinuria, calcium levels…there are many markers that ebb and flow. Nephrologists often don’t explain the complicated dance with many aspects to kidney function. Ask questions! Get to know more than GFR numbers. And understand what painkillers and antibiotics you can tolerate. You are your best medical advocate.

@mrainne We all have to advocate for ourselves. Any time a doctor suggests a new medication my first question is How much does it cost, then what will it do to my kidneys. My CKD has been bouncing back and forth between 3 and 4 for about 10 years. I take 2000 mg of Tylenol every day for Arthritis. Without that I wouldn't be able to function. I have no intention of going on Dialysis. So I live one day at a time and keep as busy as I can. Nobody has ever talked to me about diet. My visits with the Nephrologist consist of her looking a the computer and saying your numbers are stable.