I am 51 years old and recently diagnosed stage three CKD. I have an appointment with nephrology in about two weeks. What I’d like to hear about is questions that you wish you did asked on your first nephrology appointment.
I am an extremely healthy male, I have eaten a vegetarian diet for 26 years before, so I’m not worried about that changes.
Here is a link to information on eGFR calculation for CKD that might help you in discussion with your Doctor.
CKD is an extremely broad term that covers a wide variety of underlying conditions that lead to that label. (It's like saying I have a skin condition or cancer or an infection. The "type" of disease you have is incredibly valuable.) I would drill down and get specifics. So here are the questions I would ask.
1) What is the underlying condition that has led to this diagnosis - autoimmune? genetic? diabetes? high blood pressure? infections? bodily injury? something else? What is the specific medical term used for my issue?
2) What is the expected outcome? Does this situation sometimes resolve or does it continue a downward trajectory? What is the timing?
3) What can "we" do to slow down or halt progression (if that's expected) in terms of meds? in terms of diet? What are the newest medical approaches? Are they available locally? I understand that sometimes diet makes a good difference. What does my labs say that I need to do with my diet? Do you recommend that I see a dietician about this now? Or can you advise me?
4) How often will you follow up with me? Can we take labs regularly so we can stay on top of this situation?
5) Can you make sure I'm referred for a transplant (over dialysis) IF it ever comes to that? I understand that's the preferred option. (Important! In the US, one can hop on the transplant list when eGFR is 20 or lower, so keep an eye on that.) Some manage to get a pre-emptive transplant, skipping dialysis. It's the "best" way to go. Regarding referrals, some transplant centers require them.
I'm very glad you're being proactive! Some move into denial and that gets one nowhere. Sending you lots of encouragement to "lead" your situation to a good outcome instead of the other way around. It makes a world of difference in navigating the path ahead.
Thanks for the thoughtful reply! I’ve always been forward focused on health and preventative health. That’a partly why I’m so unsure how to talk to the doctor about it.
I’ve always had lower end blood pressure (which has been creeping up likely due to the ckd), genetically high “bad” cholesterol (vegetarian) but healthy when considered in ratio with my “good cholesterol”. I have always been just under the prediabetic fasting blood sugar but healthy A1c. I train and plan for endurance bike rides, runs and backpacking. I’ve used NSAIDS for muscle pain periodically but not like months or years at a time.
So I feel like I don’t know what else I could do, and can’t understand what underlying condition could have me in CKD3 at 50yo.
But I guess that’s what I’ll ask when I get there. Thanks for the tip on transplant at 20 eGFR.
Your situation could be linked to the nsaids and that can be stabilized. There are a lot of conditions out there though. I wonder what your neph will say. My greatest regret is they my husband kept himself in denial, blindsiding both of us. We probably could have staved off dialysis and transplant completely. You're doing a beautiful job looking at things thoroughly and analytically. You're sailing your ship well. Stay in touch.
October 15, 1999 - 2023
Latest bloodwork is great!
First Face-to-Face With Other CKD Patients
Hyperkalemia
