new diagnosis

[BestAuntieEver]

just beginning my diagnosis.

Both parents had ckd and ended up passing away from conditions with it.

Super nervous! My last eGFR was 41. It has already dropped from 45 then 48 then the current 41.

[bumblebee_tuna]

Hi  BestAuntieEver , welcome to the board.

What is the source of your CDK, is it a genetic variation or something else like Diabetes?

We are here to support you!

[BestAuntieEver in reply to bumblebee_tuna]

we actually have no idea. Had a biopsy and nothing came up on that. No comorbidities.

I’m guessing genetics?!

Thank you for the welcome!

[orangecity41 NKF Ambassador]

Welcome to the forum where you will receive support and shared information of our CKD journey. Has your Doctor prescribed a CKD diet for you yet? Many of us have been helped by it.

[BestAuntieEver in reply to orangecity41]

my doctor has not prescribed the diet or anything yet. I think I will look it up.

[orangecity41 NKF Ambassador in reply to BestAuntieEver]

My CKD diet that Doctor prescribed is based on bloodwork levels of sodium, potassium, phosphorus and protein. One diet may not fit all.

[BestAuntieEver in reply to orangecity41]

good thing to know. I will get my doctor’s input. Thank you!

[Beachgirl32]

firs

T they do need to find out where your kidney disease came from. Have they did ultrasound to rule our polycystic kidney that is a genetic kidney disease . Yes watch diet check lab dialysis and whatever labs are high or low in your doctor can help. Also excercise is important I use to constantly be at the pool wate

R aerobics and swimming and walking can’t do pool now

Cause I’m on pd dialysis and it was a community pool . But I did not go on dialysis until I was 66.

[BestAuntieEver in reply to Beachgirl32]

thank you for your input. Still trying to get answers. Yes, I have had an ultrasound. Nothing really showed up on that. Just got some results from a rheumatologist and my parathyroid is high. That could give us a starting block.

[bumblebee_tuna in reply to BestAuntieEver]

High PTH is common in CKD. Do you have any information from your parent's illness (you don't have to answer if it's uncomfortable). There is genetic testing you can do today - might find something.

[BestAuntieEver in reply to bumblebee_tuna]

I will certainly look into that. Thank you for the idea.

[Bassetmommer NKF Ambassador]

Welcoe to our forum. We are here to support you. Just know there are many things you can do to help keep you CKD in check. Diet is key and most doctors do not get into it because it is not their wheelhouse. Ask him/her for a referral to a renal dietician. There are many of us who sowed the prgression of CKD for years with diet and healthy lifestyles. Ask as many questions as you want. I personally love to talk food. Look to the right of this page and you will see a Topic called Diet and Nutrtion,. Good place to start and also the National Kindey Foundation website had tons of good info.

Best to you.

[BestAuntieEver in reply to Bassetmommer]

thank you for that information.

My best to you as well.

[WinJ3]

I definitely see your concern. Do you have hypertension or diabetes?

[BestAuntieEver in reply to WinJ3]

neither

[Hidden]

Are you taking any NSAIDS or prescription drugs? I recently posted a chart of my wife's GFR over a 3 year period and it was all over the place. Her variation was mostly caused by prescription drugs.

[BestAuntieEver in reply to Hidden]

no NSAIDs because I have a stomach issue and all of my oral medications have been scrutinized.

I see the endocrinologist this week to get an opinion on my parathyroid.

[drmind in reply to BestAuntieEver]

My nephologist treated my high parathyroid. I took calcitriol which he carefully titrated for several months until the PTH was in normal range and then it was stopped. I also took vitamin D3 and still do. Good luck with yours

[BestAuntieEver in reply to drmind]

I’m looking forward to seeing the endocrinologist and hope it will be an easy fix. I do have other questions too for the endo that I’m hoping she will be able to answer.

I hope you continue to stay in range.