Just now learning my GFR's were low for 5 y... - Kidney Disease

Kidney Disease

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Just now learning my GFR's were low for 5 years.

With the world under a medical crisis, I don't know if I should wait. My GFR has been from 55-64 for the past 5 years but nobody alerted me. My doc recently had a nurse call and tell me about it and ordered repeat blood tests. Twice. It's now 64. I'm Freaked. My beloved sister had 3 kidney transplants and it was hard to lose her and my brother now has CKD. With Corona Virus I suspect the clinic is overwhelmed so I am hesitant to make an appointment to see my doctor. They just closed all the schools near here. I really want to see a doctor because CKD is so scary and because I think I should go on the diet.

What do you think?

17 Replies

Welcome to the club. There are many folks here in the community who weren't notified earlier about being in the early stages of CKD. I was told when my GFR was at 32. Subsequent research showed that I had CKD for almost two years prior.

It won't hurt to see a nephrologist and get additional labs and advice on how to proceed. Nothing prevents you from beginning a kidney-friendly meal plan now. If you go to davita.com you can look up some recipes to help you get started. Watch your intake of sodium, phosphorus, potassium, and protein.

Cut out red meat, processed food, if you smoke stop, and if you drink cut way back. Once you see a nephrologist ask for a referral to a Renal Dietitian. Bring all of your lab results for the previous year and together you can develop a meal plan specifically for you.

Talk to your other doctors, PCP, cardiologist, other specialists and come up with an exercise regimen you can follow.

Start doing research on CKD and learn all you can. Knowledge is power.

The nephrologist will determine the cause of your CKD. The two leading causes of CKD are diabetes and high blood pressure. I have both.

My diabetes is under control with diet and exercise and my blood pressure is under control with medication.

DaVita offers a class on CKD if you are in the USA but I'd hold off on that for now until it's safe to be in groups. You can go to kidneyschool.org and watch their modules on CKD. You will learn a lot and be able to develop questions to ask your nephrologist.

Best of luck.

in reply to

Thank you for your thoughtful response. I will look for a nephrologist. Sometimes I can get into see a specialist without first seeing my PMD.

I also have diet controlled diabetes and hypertension under good control with medication. The problem with my diet and any changes I will make is that I have bouts of hyperglycemia, often several times in one day. I have Celiac Disease as well so have been on a weight-loss (lost 45 lbs in past 3 years), gluten-free, refined sugar-free, organic and non-processed diet and drink only water or herbal tea. My diet is very simple.

Adding the restrictions for potassium, phosphorus and salt is dauntingm though. Is there a kitchen chart with kidney-friendly foods and forbidden foods? If not, I do graphics, I could make one.

in reply to

That should be provided to you by the RD once you develop a meal plan for you designed around all of your health issues.

I agree with you about this being daunting but it's the best way to slow the progression of CKD. Write out a list of everything you eat each day and bring that to your meeting with the RD. Because of the health crisis now going on the nephrologist may elect to initially meet with you at a Tele-Med conference. I met with the RD twice in person and since then we communicate via e-mail.

I eat a lot of fresh fruit and vegetables but I get most of my protein from poultry and fish. If you prefer vegan or vegetarian meals inform the RD and that can be worked out.

rejected1 profile image
rejected1 in reply to

May I ask what kind of fish you eat?

in reply to rejected1

Ever since Fukushima, I don't eat fish. All of the fish tested in the Pacific is radioactive. Lots of people here in California don't sea food anymore.

in reply to

"All of the fish..." is a rather significant statement. Do you have any research supporting that? I ask because I live in "flyover country" and I've not heard anything about that in any form of media. Also, none of my physicians nor my RD has alerted me to that. I'm looking forward to reading the data.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi 4 leaf clover,

I would wait for now to see any doctor at any clinic. I only say this because they are a hotmess right now and you do not need to expose yourself to anything. When things calm down, I would then see a doctor. For now, I would follow the recommendations that Mr. Kidney made and get educated on CKD. There is a ton of information out there on how to help yourself with CKD.

One thing I would suggest is to look into what changed, if anything from 2/19 until now. Did you change medications? Did you take any new over the counter drugs or supplements? did you have any illnesses? Did you change up your diet? Were you well hydrated when you went for your tests? All these things can impact your labs.

Let us know what else we can help with.

in reply to Bassetmommer

I received the results of Wednesday's test today. Another surprise -- much more concerning. I made an appointment to see my PMD next Tuesday and find out what is next and ask for a nephrology referral. Thank you for your help, Bassetmommer and Mr. Kidney! BUN 30, Creatinine 1.23, GFR 43, much lower than it's ever been. I'm wondering why such big differences in tests done only 3 weeks apart.

Chris1974 profile image
Chris1974 in reply to

Certain antibiotics can drop your GFR upto 25%. With dehydration you're looking at another 10% decrease. Blood pressure is another one that goes hand and hand with dehydration. That can change within weeks to months and drastically. My GFR went from 85 to 56 in 3 days while on Bactrim and I was dehydrated. It's back in the 80s now but I have issues with all steak and chicken now so I can't eat those due to sensitivity and damage from 30 days of ciprofloxin. Probably for life. Fish is good!

Anyway I would wait to go see your doctor. The urgent care and ERs here in Southern California have been wall to wall people. Grocery stores cleaned out and hardly any traffic on the freeway. See if you can do a televisit like Mr Kidney spoke about.

Let us know what you do. Btw what's your age?

Jmchip profile image
Jmchip in reply to Chris1974

I was prescribed two medications that affected my GFR. No doc ever said there was an issue, I researched my meds and there it was...the culprits......I then saw a new doc who confirmed this. For SIX years the other docs said nothing. Sad!!!!

in reply to Jmchip

While I now trust the physicians on my Care Team I have learned to verify everything they say and order. I use drugs.com to list all of my medications and before I have a script filled, even a short script, I add that to the list and see if there are any interactions or problems with taking them with foods on my meal plan. Be aware sometimes you have to take one medication for a short duration because it's the only one available and you have to make a decision. I've been faced with that twice and both times I used the meds. My labs dropped a bit but on the next draw, they went back up again. At least it was my informed decision and not some physicians.

orangecity41 profile image
orangecity41NKF Ambassador

That is what my experience was. I am 78 and on Medicare. Had declining eGFR for over 5 years and no mention by Doctor until reached Level 3b On Medicare this is very common especially if your Doctor is part of an Accountable Care Organization, controlled by CMS.

my opinion ,make an appointment with a nephrologist, discuss your options , it may be too soon for dialysis but he can give you guidance on changing your food selections to minimize impact to kidneys. i speak from experience. my husband has kidney disease he was sent to a dialysis when his GFR was below 10. you still have time . Read all you can on Kidney.org. i wish you health.

Hi there 4-leafclover! Well, everybody seems to have covered everything you need to know. If you follow the very wise advice you’ve read so far, you’ll do great in slowing down any progression of CKD.

Have your PCP review any medications or diuretics you take, if any, for your blood pressure, steer clear of any anti-inflammatory meds, including over-the-counter pain relievers, ie Advil, Motrin, Aleve, etc. If your liver is doing okay, then Tylenol should be fine, if you have no allergies to it.

Also try to avoid protein powders in any smoothies you may drink. Avoid weight-lifting exercises, or limit them at least (it can raise your creatinine levels), and drink water in order to keep yourself properly hydrated. That could improve your GFR. If you’re unsure about how much to drink in a day, ask your doctor.

A little cardio exercise (walking) is always good. Keeping your blood properly oxygenated is helpful in energizing yourself to combat any fatigue you may be feeling. And also, as the others have advised you, watch your sodium, potassium and phosphorus intake. That’s very important.

I wish you all the best 4-leafclover. I will keep you in my thoughts and prayers. Please do keep us posted. God bless. 🙏😊👍

There is no problem because your creatinin is normal range.

But yu must check your urine protein test,if there is protein yu must ask yur dr

Hello,

Sorry to hear that this has been going on. Your creatinine and BUN fluctuations could be from dehydration. Make sure you’re drinking at least 8 full 8oz glasses of water. Our kidneys love hydration. Best way to know if you’re drinking enough is to keep an eye on your urine. Aim for pale to very light yellow.

Another important thing to note is requesting an urine sample. For diabetics this is important to do once a year to check to see if there is any protein in your urine. If there is damage to the kidney then the filtering unit have trouble and protein is found in the urine. The good news is that there are medications that can help with that and help protect the kidneys. It’s a blood pressure medication but sometimes doctors can prescribe it without any BP problems and just to protect the kidney. (ACE inhibitors or angiotensin II receptor antagonists)

You seem like you’re already following and succeeding with dietary changes. If you want, do a search on plant based diets. They are showing great results in preventing further kidney damage and even helping to improve the kidneys.

But they also need to figure out why.

Is it your periods of high blood sugar? High blood sugars can damage the blood vessels in the kidney. The best thing you can do is keep your blood sugars under control. Aim for fasting blood sugars of 80-130. And 2 hours after meals under 180 (per ADA).

Could it be Celiac that is contributing (I saw you mentioned you had celiac). There are people with celiac who get IgA nephropathy so for them making sure they remain on a strict gluten free diet is so important.

Blood pressure? Make sure it remains lower than 140/90 per guidelines but even better under 130/80. Once it gets over 140/90 it could be damaging the extremely small blood vessels in the kidney.

Hope that helps you while you wait for the nephrologist follow up.

Take care!

Hi. My Gfr is always around 62-70. No one has ever said there is anything wrong with my kidneys. I do have a duplex kidney (also had a stone removed) and I have a 8cm cyst on the other but never been told I have an issue. Have you had other bloods done specifically for your kidneys? Are they ok?

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