Very concerned. New to all of this. - Kidney Disease

Kidney Disease

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Very concerned. New to all of this.

Pisces10 profile image
21 Replies

Educating myself on CKD and read it usually progresses over time. I had a yearly physical in March this year and my bloodwork showed a creatinine of 0.99 and eGFR of 59. Fast forward to July, hospitalized for dehydration due to Covid. Followed up with PCP a month later bloodwork showed creatinine level of 1.77 and a eGFR of 30. I am not diabetic, no heart disease and BP is controlled my medication. From what I have read it could be from taking Nexium for many years for GERD. I will be having an US but cannot get into to see a nephrologist for three months. I am constantly searching for information since my anxiety is through the roof, and grateful I found this group. Because of your website I read Lee Hull’s book and currently trying to change my diet to plant based. Very challenging. I am hoping someone can shed some light on all of this.

21 Replies
orangecity41 profile image
orangecity41NKF Ambassador

Welcome to the forum where you will receive support and shared information on CKD. Check with your Doctor and/or dietitian for an appropriate CKD diet for you. My Doctor prescribed a CKD diet for me based on CKD level, and blood levels of sodium, potassium and phosphorus. Important to get nutrients you need. Attached is a link to information on eGFR rate and a link to nutrition information. Both links are from National Kidney Foundation. Keep us posted. kidney.org/atoz/content/gfr

kidney.org/nutrition/Kidney...

Pisces10 profile image
Pisces10

Thank you for your information. Do you know if there is any information to address the sudden drop? I thought CKD progresses slowly over time.

Marvin8 profile image
Marvin8 in reply to Pisces10

It does. For your eGFR to drop that much in such a short period of time indicates something unusual going on. Could be a one-off lab work. Could be a result of Covid. Could be a million other things, but I highly doubt it's related to Nexium since it happened so quickly. I'd tell my PCP that I'm freaking out, need to get in to see a nephrologist sooner, and can you pull some strings to speed up the process. EVERYbody would be freaked out to see their eGFR cut in half so quickly, not to mention the increase in creatinine levels.

LLWegeners profile image
LLWegeners in reply to Pisces10

Are you taking any NSAIDS for pain such as Ibuprofen? My wife has hip joint pain and saw her GFR drop quickly due to that.

Chucka profile image
Chucka

Hi Pisces10, Welcome to this forum. I have heard that a creatinine level can increase (and thus eGFR decrease) if you are very dehydrated when you did your labs. If you can’t get in to see a nephrologist for several months you might want to ask your doctor if you can repeat your lab work because you were dehydrated when you gave your samples. Maybe you would get a more favorable lab result and that could help alleviate some of the anxiety between now and your nephrology appt. And it could give the nephrologist more data to work with.

If this will be your first nephrology appt, have you ever had the 24-hour urine catch sample done? Often they will do that in addition to blood work to get a more detailed picture of what is going on.

I went from creatinine of 0.99 and eGFR of about 60, down to eGRF of about 40 and creatinine of around 1.8 within a year. I now have been at eGFR around 28-30 for almost three years. It can be disheartening to see the lab reports go down. Try to stay as healthy as you can with diet, avoiding stress, etc to help to maintain a positive focus. Maybe your recent profile is due to the impact of Covid on your system and you will bounce back a bit.

Wishing you all the best.

Pigsfly profile image
Pigsfly

Hi there and welcome, I’m quite new here but have recently spoken to my consultant and he told me that dehydration can alter your eGFR drastically and that is why hydration is so important. I recently had a low reading and I had them taken a week later and the results were more like my usual results.I agree that you should ask for your bloods to be done incase the dehydration was the cause.

All the very best and keep us posted please.

Take care

userotc profile image
userotc

Like many drugs, nexium can indeed cause kidney damage short and long term (see below).Best to avoid any drugs, where possible.

My mum's recent drop in eGFR from 76 to 46 may have been triggered by a couple of days on benadryl although I believe her lapse in daily hydration may be a more likely cause.

nastlaw.com/nexium-prilosec....

sciencedaily.com/releases/2...

KidneyCoach profile image
KidneyCoachNKF Ambassador

Check out kidneyschool.org

horsie63 profile image
horsie63

You said you were hospitalized for dehydration due to Covid so it's possible what you experienced was an acute kidney problem and not so much chronic. You didn't say what age you were but as we age our kidney function along with other things naturally declines. The advice to watch your meds (see drugs.com) don't drink or only in moderation, cut back on any meats especially red meat and don't smoke is great for anyone and not only CKD patients. Daily exercise based on what your PCP recommends can only help. Take a deep breath and relax .

rabbit01 profile image
rabbit01

I was diagnosed out of the blue with an egfr of 17%. Managed to keep going to 7% and ended up on peritoneal dialysis in November 2019. Not diabetic, normal BP. No family history if kidney disease. I was 48 when diagnosed and 53 when I finally started dialysis.

Pisces10 profile image
Pisces10

Thank you everyone for responding. I appreciate your information and encouragement.

RoxanneKidney profile image
RoxanneKidney

When you change your diet you will be fine as long as you are not spilling protein in your urine.

Pisces10 profile image
Pisces10 in reply to RoxanneKidney

Thanks. Thank God not spilling urine.

PecanSandie profile image
PecanSandie

What BP medication are you taking?

Pisces10 profile image
Pisces10

I am on Lisinopril 10

Blackknight1989 profile image
Blackknight1989

It’s a marathon not a sprint. You can maintain what remaining kidney function you have left for many years if you pay attention to what goes into your body. No alcohol, no NSAIDS, and mostly no supplements. Low protein and a diet managed by a renal dietitian. Of course, the natural aging process will take its toll on all of us and our already compromised kidneys. Also, unfortunately COVID or the COVID vaccine can and do cause AKI in healthy folks. Not much you can do there and as such, don’t stress about it.

Other folks I completely agree with as far as your dehydration and the eGFR. Get another test. This is an imprecise lab value that can fluctuate greatly, mine from 14-29 just in the last 6 months. That is nearly a 100% difference from one lab test to another. EGFR is used to measure the amount of damage your kidneys have sustained. Therefore, while this number can change and even increase significantly most likely that is because it is so inaccurate and not because you have spontaneously recovered kidney function, I’m sorry to say. So my recommendation is not to place so much emphasis on what the number is exactly otherwise you’ll go crazy. Additionally, there are now finally some medication breakthroughs that can essentially stop the decline of eGFR and save the kidney function remaining. Talk to your doc about all options.

The more you stress and panic the worse you’ll hurt you kidney function. So try to channel that energy into becoming smarter on CKD than every doctor you have except your nephrologist. After all, no one in this world will ever be a better advocate for you than you. You may be faced as I was with situations where medical professional are offering therapies to treat another condition that may hasten your kidney failure. I had 2 doctors and 2 nurses about ready to put me in the psych ward rather than a regular floor because I refused to allow them to inject a pharmaceutical grade NSAID into my IV. Had I not, I have no doubt I would have needed a transplant in 2006 rather than in my position now. The general public is ignorant about CKD and doctors are just a subset so unless they are nephrologist/urologist they are most likely ignorant as well. Good luck to you and take a deep breath…you got this!

Blackknight1989 profile image
Blackknight1989

I wanted to add something else I consider essential. Find your trigger. What do I mean by that, for me (FOR ME THIS IS JOT ADVICE) diet plays almost no role. That doesn’t mean it isn’t important because it is for so many other reasons. For me (FOR ME) it is BP below 120/80 and weight below 200. Makes about a 10 point difference in labs and more importantly I feel so much better. Sorry for the double post but thought it was important! My best!

neidrum profile image
neidrum in reply to Blackknight1989

I agree 100 % with with blood pressure & weight if you're over 6 ft. I think diet is good because meat and alcohol can destroy your kidneys big time. you did say (FOR ME) so you haven't really nixed diets. 😁

Blackknight1989 profile image
Blackknight1989 in reply to neidrum

No I do try to eat “right” and limit protein but I don’t follow a “specific” diet. However, for the entire 26 years I’ve been stage 4 if I’m over 200 and BP is uncontrolled my labs suck but under they are pretty good, or good FOR ME…lol!

gojets profile image
gojets in reply to Blackknight1989

Exactly everyone’s different my labs were a little up four years ago I freaked out thinking I’m gonna die soon lol mostly because I came to this site I went to two nephrologist both of them said never ever go on the Internet and specifically this site to get any kind of real information four years later and nothing changed with the labs no symptoms and I never changed anything in my diet live life while you can don’t worry about what’s going to happen when you’re 80 years old life probably sucks then anyway😀😀😀

Blackknight1989 profile image
Blackknight1989

I read an interesting study thus weekend. Nearly 48% of nephrologist don’t follow clinical guidelines! Wow! I guess they just dkk on by care about their patients. Why? Billing difficulties and it’s too hard to find information. Give me a freaking break!

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