I'm at a loss as to what to do

[SisterandJeff]

I'm told my GFR is 51. Also told not to take any anti-steroidal. I don't understand why, out of all the docs I've gone to and all the blood tests I've had over the years...why was I not told I have CKD long before last June. I had diabetes diagnosed in 2005, my blood sugar is 6.8. I feel let down my the medical field. I'll check on diet restrictions next. Thanks for listening!!

[S_dillow]

they didnt tell me until i was 3b and apparently had been for awhile.my original pcp missed the numbers somehow .you gotta advocate and be proactive in your care because most dics wont

[S_dillow in reply to S_dillow]

oops i meant docs

[SisterandJeff in reply to S_dillow]

Thanks for your advice. Perhaps the other word fits better.

[drmind in reply to SisterandJeff]

I was going to suggest that, too.

[lowraind in reply to S_dillow]

Freudian slip?

[S_dillow in reply to lowraind]

lol could be.....

[Bassetmommer NKF Ambassador]

This is very common. But you are at a good place to stop or slow the progression. See if you can get a referral to a renal dietician. If not, learn what foods are good and which ones are not. I start you off with no red meat, no processed foods, including bacon, and lots of veggies. Whole food, not processed are what you want in your body. Have a med check done to see if all your medications are safe for CKD. NO aspirin or ibuprofen ever again. Tylenol is safe. Learn as much as you can by going to classes. There are many online. Look at the National Kidney Foundation website. It is a plethora of excellent and current information.

[SisterandJeff in reply to Bassetmommer]

Thanks for your advice. I will check the Kidney Foundation for info.

[orangecity41 NKF Ambassador in reply to SisterandJeff]

Very good info Bassetmommer has given.

I was put on a CKD diet at 3b. It is based also on bloodwork for sodium, potassium, phosphorus and potassium. It has helped. After a while I got used to it.

[CindiInNC]

I was told when I was diagnosed at 3A. Lots of Dr's don't start to worry about it until you hit 3 or higher. I am already doing research on things to do/avoid. Do you have a nephrologist? I'm waiting for a referral to one.

[SisterandJeff in reply to CindiInNC]

Thank you all for your advice. I feel not so lost now.

[pheebee]

Same here, I found out by accident in my 50's when my GFR was 43. I found this site and learned a lot. I've changed my diet and and my GFR was 50 when last checked.

[SisterandJeff in reply to pheebee]

Thank you all for your advice. I feel not so lost now.

[Ziggydoodah]

Yes same thing happened to me. Its ok to feel angry and upset. We have all been there. Give yourself time to lick your wounds..then get proactive. The fact you are starting to research diet and question things, shows you are ready to start It won't be easy. Usually one step forward and two back. However as others have said, you have been diagnosed whilst your gfr is still high. You also have a community that is here for you. Some of the members are more knowledgeable than my own medical team. Plus they know the struggles and mental issues you may face. Wishing you all the best

[Ziggydoodah in reply to Ziggydoodah]

I forgot to add..ask for your actual test results. Get to know your actual levels of phosphate etc, then workout your diet plan. I have high phosphate levels but low potassium. Most doctors just say oh your levels are fine this month etc at the beginning. Knowledge really is power. Research and educate yourself as much as possible.

[Snoopy53]

I'm in the same boat. I wasn't told until I was in Stage 3. I live in Canada. Got an appointment with a Nephrologist, which I had to wait over a year. He then just said I'm fine. Was told Neph only treats when you're in Stage 5.

[Merny5]

I’m sorry to read this. You definitely were let down. This problem is so common! Why don’t they care until a person is in stage 4? I feel like a hypochondriac when I mention to various doctors that I have CKD. Then they look at my numbers and say oh you are fine? Am I missing something?

[Pigletmom in reply to Merny5]

no, your not missing anything. Money isn’t made if kidney disease patients don’t proceed to dialysis. I worked in the medical field for many years and I used to think there was such a thing as professional proactivity. My view has drastically changed since having CKD. It’s sad. We are in charge of staying on top of things, educating medical staffs and advocating. I wish you the best.

[orangecity41 NKF Ambassador in reply to Merny5]

I had same situation from a Geriatric Doctor , who said "you do not have CKD.." I changed Doctor who has given me much support.

[Transalp]

Go and do another blood test in the next week or two but this time:

No heavy exercise the day before.

Drink lots of water the day before and the morning of the test.

Try getting Cystatin-C tested as well as creatinine/eGFR, so you can calculate the eGFR with Cystatin-C as well.

[drmind]

Join the group of those finding out late. I found out at GFR 30! and I was going regularly to my primary. He missed it. Although there isn't much actual treatment at these stages,its critical to get this information so we can start making lifestyle changes to stop any progression. Best of luck

[jnmurphy]

I'm sorry this happened to you. I came here to say I had the exact same thing happen to me. I'm 48, no other health issues but I've been noticing a decline in my kidney values on my bloodwork since 2017 and my GP would ALWAYS brush it off as being normal. I finally had to force my dr to get me a referral to a nephrologist and that's when I found out I'm at stage 3A. My gfr at one point was as low as 52. My dr told me the only thing i can do at this point is to change my eating habits, follow the Mediterranean or Dash Diet, eliminate red meat, drink 80oz of water and no Advil. I had bloodwork done a few weeks after that dr appointment and my value improved drastically. My gfr was at 70! It hasn't been that high in year! I'm not saying that is the case for everyone, but it's worth a try. We have to be our own advocates. I don't understand how these doctors can get away with this. Best of luck to you!

[Darlenia]

CKD is an umbrella term for a variety of kidney issues, it's like saying you have cancer or a rash. It's critical to know what is the underlying cause for your situation. So, one may have CKD due to autoimmune conditions, polycystic disease, infections, bad choice of meds, high blood pressure, diabetes, etc. Currently, the leading cause for CKD is diabetes. My husband has the latter - it takes about 15 or 20 years for it to do its damage. It's a disease that uses glucose (sugars/carbs) to slowly stiffen and narrow blood vessels through the body - including those precious blood filtration vessels in your kidneys. I, personally, think of it as a metabolic vascular disease. I'm sure most diabetics know that it's not a good thing but it quickly becomes routine to take the medications and the warnings often wane over time - especially since the disease remains largely pain free to the patient. So the appointments simply roll on - mostly quick in-n-out labs. Then, suddenly, the "wear and tear" of glucose on the body dramatically surfaces - heart issues, feet issues, eye issues, kidney issues, etc. Once damaged, the the situation can't be undone. I know - I watched my husband spiral into kidney failure, dialysis, and now transplant. But you still have the time to take immediate and direct action on your glucose. That's a very good thing. So take a long, hard look at your labs. Then enlist the help of a medical professional to advise you on how to reduce sugar and carbs with your food and drink choices. (Exercise is also very helpful in this process since that burns off sugar.) That person watching over you should also take your labs regularly to make adjustments, especially with meds. Often, for diabetics, avoiding rice and flour products is advisable. It's in a lot of things - it's especially important to avoid "processed" foods in that regard. Become a label reader if you're uncertain. The good news is that there are many substitutions one can turn to - cauliflower rice, almond flour for wheat flour and more. Fresh vegetables and low sugar fruits and white meats are good. Your body, especially your organs, will love you for it. Please know that you have the power to stop the ravages. My husband's mother did that - immediately changed her diet and lived well into her 80s - never needing meds of any sort. My husband eventually did so too while on dialysis. I know you can do this too. Dietary changes for diabetics are exceptionally meaningful and important. I wish you well on your journey. For more information, see niddk.nih.gov/health-inform...