New to site with CKD and 16 GFR

[alperk]

My wife, now 65, has medullary sponge kidneys caused by a malfunctioned parathyroid when she was young. Her creatinine hovered around 1.5 until 6/20 when it rose to 2.0 and stabilized. Then, in the last 6 months it jumped to 3.1 with a GFR of 16. She walks 35 miles a week, works out, plays 18 holes 3 times a week and feels just fine. The GFR trend is very concerning but her health otherwise doesn't reflect this poor number. She sees a nephrologist but I would really like to get some comments from the community..

[Bassetmommer NKF Ambassador]

I felt great most of my kidney journey. If she feels fine, then that's wonderful. Does she follow a renal diet with low protein, low salt and lots of whole foods like fresh vegetables? Has she had all her medications checked to see if they are renal safe. The pharmacist can help with that. Does she monitor her BP, drink water and limit caffeine? Does she manage her other comorbidities, if she has them, like diabetes or high blood pressure?

I was told in 2018 I would be on dialysis in 6 months. I was at a GFR of 24 and it did continue to slide downward, but at a much slower rate than they thought it would. It was all because I was following the above-mentioned ideas. Currently, over five years later, I am preparing for dialysis so that when it comes, which will be soon since my GFR is pretty low, I will be set for home dialysis.

Just for example, 3 weeks ago, before my surgery, I was still going to my water aerobics class and I even now I still manage to get two miles of walking in most days.

Also, lab results are a picture of the day it was done. I had one lab done back two years ago that looked awful, lower GFR and other not-good numbers, but I felt fine. I said let's retest if 3 months, and things in that newer lab went back to what was my normal. Another time them made me rush to the hospital because my potassium was extremely high after the result came in with a 6.3 result from the lab. They hooked me up to a heart monitor and then drew blood. Two hours later, with a sheepish smile, the doctor told me it must have been an error, because the new blood draw had my potassium at 4.7. Make sure she is hydrated when going for labs.

Best to you both.

[alperk in reply to Bassetmommer]

Thanks so much for your response and insight. She is on a plant based diet, no meat at all except fish. I also expect (hope) dehydration was a factor. She has another blood test as part of annual physical in a few weeks so I am hopeful for a better result. Thanks again

[RhenDutchess123 in reply to alperk]

I suffered with Parathyroid Disease for years...just curious, did she have any removed ?

[alperk in reply to RhenDutchess123]

Yes. She had a parathyroidectomy when she was 24 but too ate she had developed medullary sponge kidney.