Stage 3b last month, anyone else feel like their doctor downplays the numbers?

Health & Wellness Renal Health
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I got the call four weeks ago. eGFR 38, stage 3b, “we’ll keep an eye on it.” That was the whole conversation. Eight minutes, walked out into the parking lot, sat in my car for forty.

I’m 54. I’ve known my kidney function was sliding for a couple of years, the diabetes has been chipping away at it slowly, but seeing it written down on a lab report did something different to me than knowing it in the abstract. My nephrologist is kind but she talks about it the way you’d talk about a weather forecast. “Some people stay here for years.” Okay. Some people don’t. Which one am I going to be?

The part nobody warned me about is how much grief there is in food now. I made a roast chicken on Sunday and stood at the counter trying to figure out the potassium load and ended up just eating toast. My husband keeps saying “you have to eat something” like that’s the issue. The issue is I’m 54 and I’m grieving a baked potato.

I bought a notebook to track my labs, my BP, my fluid, my food, but I keep not opening it because opening it makes it real.

For the people who’ve been here a while:

  1. How did you get past the paralysis of the first few months?
  2. Did tracking actually help you slow the decline, or is that a comforting story we tell ourselves?
  3. What do you do on the days when you feel fine and forget, and then a lab comes back and slaps you in the face?

I’m tired. Thanks for reading.

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Stage 4 here, diagnosed at 3a six years ago and held steady at low 30s for the last two years. So I want to say first: the paralysis you’re describing is normal and it does pass. For me it lifted the day I started tracking, not because tracking is magic but because the unknown is the heaviest part. Once I could see my BP, my fluid, my potassium, my eGFR all in one place, the disease stopped being a monster in the closet and became a thing I was managing. I use CareClinic for it because labs, meds, BP and food all sit in one timeline and I can show my nephrologist a real picture instead of guessing. Re the baked potato, double-boil and soak, it changes things. You’re not alone in this.

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Dana, the parking lot for forty minutes part broke me a little. I was 3a at diagnosis, hovering at 3b now, and the food grief was the hardest part of the first year for me too. I think the honest answer to your third question is that the days you forget are a gift, take them. The labs will be there. What helped me get out of paralysis was picking one small thing per week, not all of it at once. Week one was just logging BP twice a day. Week two added fluid. By month three it was second nature and not a daily emotional event. Be gentle with yourself. You just got news four weeks ago. That’s nothing.