New in the Group, worried.

[Yalroro]

Hello Im new in the group, recently I had a routine blood test that show a gfr of 51.4 the doctor told me to drink more water so for a month I did and did my blood test and came back with gfr of 58, but after a month it was 47 AMD a week later 45, Im 46 years old female, I need some prayers and help. Thank you God bless.

[Michael__S]

Welcome to the community. Are you currently followed by specialist such as a nephrologist and do you know the cause?

There are a lot of good information available from NKF and one of the best thing you can do beside building your medical team is to follow a renal diet kidney.org/professionals/gu.... Depending where you live you can ask to be referred to a renal dietician or if it's not possible a registered dietician.

Davita is also a good source of information davita.com/diet-nutrition/a...

[Yalroro in reply to Michael__S]

Thank you Michael Im seeing a nephrologist this Thursday but Im thinking my gfr is dropping fast😔 this is all new to me I guess I just have to wait and hope that everything is going to be fine, thanks again. God bless all of us.

[orangecity41 NKF Ambassador in reply to Yalroro]

I keep an average of my eGFR, sometimes it goes up. Here is link to eGFR and calculation from National Kidney Foundation. kidney.org/atoz/content/gfr

[Yalroro]

Thank you!

[Blackknight1989]

I understand the concern with GFR as it is the determining factor of our levels of CKD. However, it is an estimate that can be influenced by many factors. Most reputable websites like NKF, AAKP, NIIH and most docs only look at the lab results to determine levels and treatment every 3, 6 or 12 months because of the multiple factors tht can affect GFR. Additionally there are multiple equations to calculate GFR so if bloodwork isn’t done by two different lbs using two different methods the GFR reading may very to an extreme. Here is a good overview from NIIH niddk.nih.gov/health-inform....

If you go to niddk.nih.gov/ and search for GFR or eGFR there are 22 pages of results explaining in detail GFR. Educate yourself and don’t let your labs scare you or rule your life. Know what they mean and how they can vary so you aren’t living in fear. No one will advocate for you better than you and the only way you can do that is to educate yourself daily. I have been stage 4 with GFRs from 13-22 since I was 29 in 1996. In December I had a GFR of 14 due to untreated HBP for six months. Once I got back in my BP meds in December and got the BP under control my GFR in March was 20 and April 22. My new VA doc panicked in December 2020 despite my warnings to him that my creatinine would be about 4 and GFR about 15. I wasn’t off by much but he immediately requested a referral to a new nephrologist and sent me a letter about CKD 5. However, I was not panicked or worried because I knew my readings would be down due to the untreated HBP. Doesn’t mean I don’t need a group of care providers and monitoring every three months. It only means I know me and my disease well enough to not panic over one test result. You can do that as well and in my opinion you need to know all you can and reinforce or learn new things daily. It is the only way to advocate for yourself in a disease that too often gets blown off by doctors until you are in stage 4 and that is too late. I wish you all the luck in the world in your journey with CKD and I understand as a newly diagnosed patient your fear. However, it is fear that leads to not seeing this as a journey and a change of lifestyle to keep yourself out of stage 5 as long as you can. So read, learn and become a knowledgeable advocate for that special patient…you! All my best!

[Tuolumne in reply to Blackknight1989]

Thank you, this is very good to remember and good advice. So far I have had three GFR tests—the first one was 52, then two weeks later 56, then three months later 52 again. I was depressed about the last 52 because I had really cleaned up my act and my diet (going completely plant-based) and had assumed my GFR would go up. However, my doctor was unfazed and acted as if these numbers were the same. I have another test in three more months. I think there are more positive changes I can make (though by no means is my diet now considered "bad"). Eventually, I hope that my GFR will improve, but if it stays in Stage 3a for a long while and gets no worse, I will consider myself blessed.

Thank you so much because it's good to hear encouraging thoughts from others.

To the OP I want to say, hey, my GFR changed in two weeks, don't take it too seriously. It goes up and down. The best thing to do is watch your diet and give yourself time. There are a lot of studies about how plant-based can help as well as low-acid. Here are some interesting links.

ncbi.nlm.nih.gov/pmc/articl...

thekidneydietitian.org/pral/

I changed my diet and I feel a lot better. I think my overall health is improving and I'm gradually losing weight, which is a much-needed change. My doctor knows about my new diet and approves (or rather, is disinterested, as they say that all I really need to do is drink enough water and watch my salt).

[Yalroro in reply to Tuolumne]

Thank you! Blessings

[Yalroro in reply to Blackknight1989]

Oh thank you.... I hope to be ok.😊

[orangecity41 NKF Ambassador in reply to Blackknight1989]

Thanks for the good link on eGFR tests information.

[Tuolumne]

I wrote another post below in response to someone else, but I wanted to also tell you that I'm praying for you. There are a lot of encouraging articles online and I think you will feel encouraged.

I was in the same boat as you are now a little less than a year ago. Very panicky and scared. I'm also in Stage 3a kidney disease. It really freaked me out because when I was a teenager I had a serious kidney infection (blood in my urine) which resolved, but I always felt in the back of my mind that my kidneys were delicate. All subsequent check-ups after my childhood infection said my kidneys were fine. But for all these years, I always worried.

And now...here I am. It finally happened. Kidney disease. I was so scared. Then I prayed about it and I did some research online. The thing that was most important to me is that I not go down some rabbit hole and try some really extreme crackpot remedies and ignore my doctors. And I found just what I was looking for—I just changed my diet. Not in an extreme way that would upset my doctors, but I think in a sensible way.

I was already vegetarian when I was diagnosed, but research showed that going plant-based (almost vegan is what I call it) is supposed to help. A specific kind of vegan diet, mostly whole foods (fruits and veggies, and a few grains and legumes, but mostly fruits and veggies). Oh, and gluten-free. Not a lot of processed fast food. I keep track of my protein, calories, salt and fat. I avoid all cola drinks and haven't had any carbonated soft drink in ages. I don't have much sugar but need to cut back even more.

So far my GFR hasn't gone up, but it hasn't gotten really worse either. My doctor is pleased and predicts that I'll be fine for many years to come. I have hopes that I can improve my health and GFR in the future but accept that it will take a little more time. I might have some ups and downs but overall, I am hopeful.

Check out this page of testimonials from the site of a book about stopping kidney disease. kidneyhood.org/pages/custom... This author is discussed here often, I am sort of following his book and sort of following another plant-based diet for kidney patients. I'm not advocating this author's recommended diet over other similar diets. I really don't know which is "best" and it probably depends on the person. You don't have to buy anything special to go on the diet mentioned on the site (though that site does sell something, you don't *have* to buy anything and many people don't).

I want you to look at the testimonials so you can feel hope. Changing our diet can make a HUGE difference. I think you will find a lot of information out there to feel hopeful.

[orangecity41 NKF Ambassador in reply to Tuolumne]

Important to check with your doctor on a suitable CKD diet for you based on bloodwork and/or get a referral to a renal dietitian.

[itzmich]

Your gfr will fluctuates so don't worry. Do stay hydrated. 8 glasses of water. I'm sure your doctor will talk about nutrition but if he doesn't do your own research because it will help you on the long run. Make sure your BP is good. Cut down on meat products, caffeine, processed foods, dairy, soft drinks etc. It is overwhelming at first but changing up the diet will make you feel better. Good luck on your journey find a nephrologist you trust and like.

[Yalroro]

Thank you! To all of you, I need all the help I can get! you are so good to me

[Sheilajt]

I feel for you i am very much in a similar situation to you with a down hill sliding egfr rate, my consultant has diagnosed anca in my blood, fairly rare so they believe mine is due to an autoimmune disease playing a part, i do hope they get to the cause of yours quickly and wish you well and prayers xxx❤️

[UhOhCKD]

Feel good that you caught it before it went lower, many people have a lower eGFR than you and are doing fine, just take it serious and don't get too confident and start eating and drinking things you shouldn't and you'll be great!

[Yalroro]

Thank you!