53yr old female w/ stage 3 CDK

[Wendy2135]

I did not realize my kidney function was low until it was just under 60. I don’t have high blood pressure, diabetes or obesity. My kidney function has hovered at this level for years. I looked back at lab results from the last 10 years. I am not sure the cause of my CKD. I know the medications that can be problematic & have not used them. The specialist told me not to worry about it. His only advice was not to eat too much protein. This does not seem like very good advice. I would prefer to be more proactive so my CDK does not decline further.

Thanks for any helpful advice.

[WYOAnne NKF Ambassador]

What you explained is how kidney disease works. There are no real symptoms until your kidneys start to fail. I think you were fortunate enough to have blood work done and it has been caught fairly early. I am 18 years post transplant, and my first sign of kidney disease was high blood pressure. At this time my kidney function was at 50%. I am not diabetic or suffer from obesity either. They found through biopsy that I had focal segmental glomerulous sclerosis - my kidneys were getting all scarred up inside. This was all caused from step throat I had as a child, followed by nephritis. I guess I wonder if you saw a nephrologist? I know you said you saw a specialist, but if it wasn't a kidney specialist you should see one. You need to get a list of questions ready and ask so you know where you stand. There are things you can do now, and the nephrologist can make suggestions. Also, look at this site at TOPICS on the right hand side of this screen - DIET and NUTRITION might give you ideas. Good luck to you and keep in touch!

[Tammit in reply to WYOAnne]

Definitely find a nephrologist and have him or her work with you on managing this. It’s doeable. I found out I have PKD in my early 30’s and my numbers were very steady for years. Only until the past two have they declined and I’m now awaiting final steps pre transplant. I’m now 53. Also work with a nutritionist who the nephrologist can refer you to. What you eat helps a lot in managing. Lots of good Kidney diet cookbooks on Amazon. Keep stress down, no Advil, manage blood pressure, be proactive. They are there to help. My best to you!

[KathleenMA]

I agree, if your specialist isn't a nephrologist, find one that doesn't brush you off. Stage 3 is concerning but you've been lucky to stay stable for a long time. I remember my nephrologist saying that I was lucky to stay stable too but I could "fall off a cliff" and drop rapidly. That never happened but it did steadily start to drop in my 40s and I did 15 months of dialysis then received a transplant in June of 2016. Good luck to you.

[maryalraines NKF Ambassador in reply to KathleenMA]

Find a really good nephrologist that can guide you as to what you need to do. My PCP put me under the care of a nephrologist when my creatinine started elevating & that was 17 yrs before I needed dialysis & ultimately a transplant. And, that’s correct, your kidney function numbers can go into sudden decline so seeing a nephrologist to evaluate you and your lab is instrumental to your good health. I started declining rapidly after 17 yrs of relatively being stable so my nephrologist was able to suggest going on dialysis before I went into total kidney failure. Once a person goes that low it’s sometimes difficult to get back up to a good level. It’s important to stay well and keep your labs intact in case you are interested in transplant. Hope this helps.

[rabbit01]

Lucky you that you have found it with so much kidney function remaining. I did not know my kidney function was low until it was just 18%! I was diagnosed three years ago at age 48 after having a routine blood test to check my cholesterol level. In 2004 my kidney function was 100% so what happened to the 82% between 2004 and 2015? No idea and neither do the doctors. Like you I don't have high blood pressure or diabetes or restricted blood flow or cysts. They think it might be a condition called IGAN which is an autoimmune disorder. I did have a bad chest infection in 2014 and I think that is what ruined my kidneys. Since being diagnosed 3 years ago I have cut out alcohol (I used to drink above average but not loads) I no longer smoke (was only ever a light smoker in any case). I have cut down on red meat and dairy so rarely have any. I don't drink cola but I do drink a lot more water than I ever did. I also have a lot of dark berries such as blueberries and blackberries. I don't have take Aspirin or ibuprofen anymore. I think this has kept my kidney function stable over these last three years.

[Patient-Empowerment NKF Ambassador NKF Peer Mentor]

Hello, Wendy and bravo for reaching out with the intention to be more proactive! Always listen to your heart and follow your gut, especially when you think your healthcare providers are not giving you the advice you are seeking. I was quite frustrated for years and actually had to find the information I was looking for outside the exam room. I attended patient conferences, interviewed patients who had more experience than me and switch nephrologists more than a couple of times. It seems as though most kidney patients, (like you and I), are left in the dark until our disease advances - not good! Using your time more wisely now can make all the difference in the world. Timing is everything, so I applaud you for wanting to learn more and do before your disease advances. You are not alone, so keep writing in! PS: You might want to take a peek at a book called: "Shift Your Fate: Life-Changing Information for Proactive Kidney Patients." Be well and stay connected! - Risa