Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?

He is still resisting going in to see the doctor - or calling. I'm still driving - we convinced him to give up driving last year, which he was delighted to do. Plus he has only gone out to visit doctor and dentist. And now declining to do that as well. He is quite happy at home and I've managed to keep the pain level down for him (Tyenol, which the doctor said he could take). Most of his symptoms are more of the nitty picky type of thing as far as he is concerned. Feet are almost always elevated so that keeps the swelling down. No pain with the 'red palms'. Even the diarrhea a couple times a week doesn't seem to bother him. Nor the low diastolic blood pressure. So basically he is a happy camper other than he hates taking all the meds he is on presently and doesn't want more - which he is sure the doctor would suggest if he goes in. His choices of foods (mostly sweet) are terrible but I do manage to get a lot of fruit and veggies down him. Kids and I figure at 88 with his health problems he might as well just enjoy things as much as he can. He likes using me as a research assistant so I can answer his questions - which I probably bungle but keeps him happy.

Thank you, Ginger. Well tbh I’m scared but optimistic. I haven’t been sick in years, not even a cold. So overall I think I’m relatively healthy. My doctor thinks that stopping the Lasix I was on for the past couple of years and stopping NSAIDs and other OTCs might bring my GFR back up some. Crossing my fingers. I was a nurse for 40 years so I believe in being proactive about my own care.

Yes, get a referal. See what other tests can be done to get more information.

Hey guys, I am new to the group. I like reading about all of your options,advice, and experiences. I have had right kidney issues for a long time such as stones and kidney infections. Also nagging pain in the area. A trip to the ER last year for an unrelated issue revealed a 8mm ( if I’m remembering correctly) cyst on they same kidney. Over the past 10 years I have had issues with funny smelling urine, foamy urine, and random cloudy urine. Swelling a few times in my ankles. I have never had uncontrolled high blood pressure or diabetes. I do have pain constantly in the right kidney area mostly if I bend a certain way. I do have arthritis ( psoriatic) I have been on meloxicam for years. Recently quit taking it and started methotrexate. I also wake up most nights thirsty and very dry mouthed this also has happened in the day. It’s like all of the water just leaves my mouth. No saliva at all. I drink so much water every day and it is very rare that I let myself get dehydrated in anyway so none of the issues above should happen. I recently have told my primary doc that if I have to hold my urine I tend to also get nauseous. He says it is unrelated. Now my creatinine has been slightly elevated for probably 7 hrs. but I didn’t worry because the doctor was not worried. However, now my creatinine is creeping up and I am worried. I’m worried my doctor is not as familiar with kidney issues as he should be. He think I do not need to see a nephrologist just. Oh my goodness! When should I , after I am in complete failure and past the point of no return? Also why is it that none of my doctors have run a UA? I hope this isn’t too long and drawn out. Thank you in advance.

I had some of the same symptoms. I had to become my own advocate. I scheduled a visit with a nephrologist at the University Hospital. After many normal blood work I was scheduled for a renal biopsy which came back”normal”. Thank goodness I had chosen the right Nephrologist. Additional testing and I will diagnosed with Minimal Change Disease. Don’t stop researching your symptoms and seek a second and third opinion. God speed!

@littlebittexas [cool screen name!] Welcome to Mayo Clinic Connect. We are fellow patients who share our stories and experiences here, and help others on their own health journeys.

I am also a kidney disease patient, stage 4. Kidney disease can be a "quiet predator", in that many times it progresses slowly. You don't realize that there is an issue until later. Unfortunately, the majority of general practitioners do not have a great knowledge in kidney issues. If your primary dr will not refer you to a nephrologist, call your insurance and ask about self-referral. It is certainly better to pursue a specialist's opinion now.

In my experience, I had a wonderful general dr who sent me to an equally wonderful nephrologist, back in 2014. It has been quite the journey! There are many causes to kidney disease, including family history, high blood pressure, diabetes, lifestyle choices, certain medications, or like mine, a weird autoimmune disorder.

Please let me know what you decide to do, and if I can be of any help to pursue your decision! Will you do that?
Ginger

Ginger, thank you so much for your advice. What a blessing to have a group like this. By typing my story alone made me feel better. By hearing yours I will take action! Stay well 🙂

@littlebittexas Yes, the community of Mayo Clinic Connect is a special one, to be sure. We're here because we care!

Like you, I have found that writing out things [thoughts, symptoms, feelings] tend to take some of their power over me, away. Have you tried that? We have a journaling discussion here on Mayo Clinic connect that you may find informative: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/ While it hasn't been active recently, I think we should change that! Don't you agree?

Please come back and let me know the action you have taken to get more information on your kidney disease journey.
Ginger

Just diagnosed with stage 3 CKD. I’m 68. What happened to stage 1 and 2? Kind of a shocker. I see a NP as we don’t have a lot of internal medicine doctors in my area. No mention of referral. Was on Spironolactone and I ASKED to discontinue as I noticed that was a Rx that could cause CKD.

@brklimeks Welcome to Mayo Clinic Connect. We are a community of patients, family members, and caregivers, sharing our unique health journeys with fellow members, offering support and experience, and what has worked for us.

CKD stages are based on the eGFR function level of our kidneys. From the National Kidney Foundation, here is a chart https://www.kidney.org/atoz/content/gfr

You mentioned you were taking spironolactone. Here is information from Mayo Clinic's website on that drug: https://www.mayoclinic.org/drugs-supplements/spironolactone-oral-route/description/drg-20071534. If you are taking spironolactone +hydrochlorothiazide, here is the Mayo Clinic information on that: https://www.mayoclinic.org/drugs-supplements/spironolactone-and-hydrochlorothiazide-oral-route/description/drg-20071484 And remember, interaction with other medications can be an issue!

Chronic kidney disease may be caused by genetic issues, medication side effects, lifestyle choices, high blood pressure, diabetes, or a combination of any of these! It will be to your benefit to narrow down the cause of your decreased function, in order to work with it, and minimize the effects as possible. For me, I am in Stage 4 now, having started out Stage 2, finding out I have a rare autoimmune condition for it. I take blood pressure medications, a water pill, and follow a renal diet.

You might want to consider getting to a nephrologist for kidney care. Many NPs and primary doctors are simply not educated to follow a kidney disease patient. It can be a sneaky disease.
Ginger