Hello. I'm so glad to have found this supportive and helpful community! I apologize for the long post.
I first noticed when I received routine bloodwork results a year ago that my eGFR was flagged as low at 80. Since I didn't know what an eGFR was, I started researching and was alarmed to read that I was in Stage 2 kidney disease. I called my doctor and told her I was concerned, and she said that she was not -- that they didn't even used to call the numbers abnormal unless the number was below 60. She advised me to eat more fresh vegetables and drink more water, and we'd keep an eye on it. By the way, I've been prediabetic for about ten years. My mom died of diabetic complications/kidney failure at the age of 76, so I'm naturally alert to anything involving my kidneys or A1C.
My doctor seemed unconcerned, and so I'll admit that that I didn't make many changes except to drink more water. I was about 60 pounds overweight, and I lived a sedintary work and personal life. However, I've realized how foolish ignoring my extra weight was, and since April, I've lost 30 pounds by walking every day and eating smaller portion sizes. I am drinking more water (I was a constant diet soda drinker). By the time of this year's physical, I felt much better physically, felt proud of my achievements, and was hopeful for my new bloodwork numbers.
However, my numbers were worse! My GFR had dropped from 80 to 78, my A1C had risen from 5.7 to 5.9, and I had high cholesterol for the first time (239). I was devastated. All of my hard work and lost weight seemed to have no effect on my health.
Of these numbers, I'm most worried about the GFR. I went back and checked, and my 2020 bloodwork score was 86. That means I've gone from 86 to 80 to 78 in three years, which feels like a horrible pattern. I know that 78 is a much better number than what most of you are dealing with, but it's the trend that bothers me, as I know that kidney disease is not reversible.
Anyway, I am having tremendous anxiety and depression about all of this. After bugging my new doctor, she finally referred me to a dietician who wasn't much help, unfortunately. She gave me basic suggestions about lowering sodium. Because my potassium is OK, she said I just needed to eat better. She later emailed me info on a low sodium diet and info on a diabetic diet (nothing about the cholesterol), but the two diets seem so contradictory in many ways that it's so hard to know what to eat. I know fresh foods are best, but I'm struggling so much. Everything in my pantry has so much sodium. I feel like I'll never be able to eat out again, and the foods I've relied on to successfully lose weight, like turkey sandwiches and low-calorie frozen dinners, seem off the table. I'm worried about my vacation with my husband next week when we'll be eating out for many meals. It all feels so hopeless. None of my medical team seems to be taking my numbers that seriously, so I'm confused. Basically, everyone says that because I'm stage 2, I don't have to make drastic changes -- that just small changes will help. Is that true?
How strict does my diet need to be at this point? Is it possible for me to stay in Stage 2 forever? Am I overreacting? The doctor doesn't want to refer me to a kidney doctor at this point and doesn't feel any medications are necessary -- for the cholesterol, PD, or CKD.
Please help me. I'm really, really struggling.
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GracieMom
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Okay I’ll give it a go as y’all say…first of all you don’t mention your age…after about age 40ish kidney function starts declining about .5–1 point a year…it isn’t due to CKD or any underlying disease proses but just as we age we start wearing out. Makes sense if you think about it…we aren’t designed to live much longer then 80-125 years AND the kidneys are tremendously abused by us when younger.
Second it is called eGFR for a reason (it is estimated and may be off as much as 30/50% from mGFR (true measured gfr) I believe our NIH does a much better job than your NHS in point this fact out but here is the link to the NHS site with the explanation:
CKD is generally diagnosed when there is evidence, for more than 3 months(so a series of tests
kidney damage (usually urine albumin > 30 mg/g creatinine, but includes other clinical findings such as hematuria, congenital malformations, etc.) and/or
decreased kidney function (eGFR < 60 mL/min/1.73 m2)
AND
Although kidney function tends to decrease with age, this process has not been well investigated. Many people with age-related kidney function decline may not progress to kidney failure. Thus, the prognosis for a 75-year-old patient with an eGFR of 55 may be different than that for a 45-year-old patient with the same eGFR.
In addition, GFR may be too narrow a basis on which to assess risk for progression. The approach to staging is likely to evolve as it is informed by ongoing longitudinal research, e.g., the Chronic Renal Insufficiency Cohort study
I don’t find that on the NHS site anywhere but I’m not familiar. I was diagnosed stage 4 on 02-08-1996…creatinine (no eGFR in Arkansas in ‘96) 2.9 so about an eGFR of 22/24ish. I was jaundice and had a condition called ascites and the ER doc drained almost 60lbs of fluid on about 5/6 days (even the Merck Manual said in ‘96 no more than about 5lbs a week unless supplementing with sodium-bicarbonate and kidney function tested daily) but I wasn’t scheduled for follow-up for 2 weeks…long story short I developed metabolic acidosis and had AKI and flat-lined on the ER table. The doc was paralyzed with fear so a nurse intubated me and I woke up 3 days later…6 months in ICU , 4 on the ventilator and another 6 to recover. My creatinine reading right after the crash 11.7. Today it’s 3.6ish this February it’ll be 28 years stage 4. I too had anxiety ( still do but better now and certainly do not require 3-5mg Xanax bars a day as I was on then). My point…there is nothing to be concerned about yet. If you DO NOT eat healthy start, start exercising if you do not, stop alcohol period, no NSAIDS ever (again my opinion) and go here to learn all you can or want to about CKD…
A fluctuation of 3/4 points in eGFR is due to how fast one lab spins the tube, or how much contamination is on your skin, or if you are dehydrated etc it’s nothing. From 12/16/20-7/31/21 my eGFR went from 17, 22, 24, 29 and then 17. So say the “average”is 20 even a 3 point change is more than 10% at my puny levels. Finally, I had the highest eGFR in the ER while being diagnosed with COVID…lol what are the chances the lab may not have been entirely accurate…as always my best to you for your best health!
Thank you, Blackknight. That brings me some comfort. I'm 57; in my research, I learned that the average eGFR for a woman in my age range is 93, and with my other risk factors, I want to take this seriously without needless anxiety. I appreciate your feedback and resources -- I will check them out.
My pleasure and unfortunately many unconsciously would have dismissed because we knew inherently you were fine (most likely as I don’t believe we have ANY medical professionals here but some mighty knowledgeable folks who’ve learned bed the journey and too me that makes many of them more qualified than the refusal to learn stem to your patient Kings of the Kidney some think they are!). So if I helped at all it makes my day…spent my port Army life in service to helping my fellow man/woman and as corny as it may sound it is about the only pleasure I can still do. So thanks for your kind words! Finally, I cannot emphasize enough of you are diagnosed (with any type of potentially life robbing disease) you MUST be your own best advocate because and especially with CKD the lack of knowledge of patients and providers alike (with the tremendous strides made in the last decade compared to the 5 decades prior) if you don’t work to keep learning your specific disease process you may end up with a 1200mg shot of ketoprophen and AKI from NSAIDS toxicity which is basically what happened to me…I could handle that at 29 but just barely…there would be no way to overcome that at 56. So until you lose consciousness please always be your own best advocate as no one knows you and whatever might be your underlying disease process better nor cares more about the outcome….finally (REALLY I promise) as a rule of thumb “If it sound too good to be true it probably is!” My best in your continued health!
Thank you, again, Blackknight. I appreciate your kindness and the fact that you took the time for me and shared your story. One question, though -- my doctor did not check for protein in my urine. Do you think that's necessary before ruling out Stage 2? She didn't feel a urine test was important. As you say, I feel like I must advocate for my own health. I'm thinking that my primary goal now should be to keep the pre-diabetes from advancing to diabetes (if possible), which I know would put my kidneys at much greater risk. I have been exercising and eating better and have lost half the weight I need to. I've just been confused since the last checkup as to how strict I need to be with sodium control. My best to you, also, Blackknight. I'm grateful to you.
In my opinion you are spot-on correct. This study dropped a couple of weeks ago. It show that using eGFR AND UCAR to measure both kidney function(remaining) AND kidney damage is essential in predicting better outcome in all-cause mortality. So without both OVER a period of time (not a one measurement diagnosis) and with interventions earlier (like at stage 1 or 2) using proper diagnostic techniques leads to BOTH better quality AND quality of life.
So you specialist is just a product of her training and doesn’t appear to follow the literal explosion of research and new technologies (or ways of addressing CKD as opposed to control as best we can the HBP until the inevitable stage 5 then is when I earn my money) it’s an uphill battle and after going through 3 here in BFE I’ve decided I can do better without the “I’m the doctor I went to medical for 8 years what do you know” attitude of not only not listening but of taking offense to the GALL I had as a lowly patient suggesting something to them. If all goes well by Christmas I’ll be on the Emerald Coast of Florida and I’ll have many more choices.
The advocacy groups here on the US are fighting this thinking but it’s slow going here in the rural south…
Here is the link don’t overthink the text it’s just a trend…your outcome CAN be different but unfortunately that mostly up to you to force that issue currently.
Finally I posted the registration link and the agenda for RSN.org’s Hope week…take a look and drop in virtually as these are really good. She is our age but had her first transplant at age 4! She is on her 4th transplant currently…that’s a fighter! Hope this helps some and my best to you!
So youve had little or no meaningful support with CKD from a doctor with diagnosis and dietician with nutrition and lifestyle. Sadly that is very common eg my mum.
You are right to address CKD with nutrition and lifestyle and that should continue. My mum (age 67) was able to almost double her eGFR etc by following a Nutritional Therapy protocol.
If you require support, I can send you link(s) to a range of qualified Nutritional Therapists from which you can select an appropriate one e.g. renal specialist. Their support should also help with other medical conditions eg mum was able to wean off a BP drug. But the NT should also use your doctor, as appropriate e.g. for tests.
Links would be helpful -- thank you, Userotc. Do you have an idea of how much I would need to restrict sodium in stage 2? I'm struggling with that the most, but I'll do what I have to do. Good to hear that nutrition therapy was able to help your mum.
You're worrying too much. The minimal changes in your GFR can be how the lab works or even if you were dehydrated at the time. Here in the USA, one is not referred to a kidney specialist until your GFR is in the 30 range. I was diagnosed when my GFR was 33 and I was in my 80's. It's been several years since and my GFR fluctuated up and down a few points, but essentially stayed in the 30 range (CKD 3B). I found out that my GFR was in the 30's for several years prior to a formal diagnosis when I searched old lab reports. No one ever told me. As many on this forum will tell you and much to our dismay, our doctors are late in telling us we have kidney disease. It would have been nice to know years ago when my GFR was in the 40's or 50's so I would have worked to slow any progression. Relax about your diet. Most doctors will tell you to limit sodium to 2000 mg or less a day. So, don't salt things and try try to eat low sodium breakfasts and/or lunch so you can enjoy a nice dinner. Drink at least 6 or more glasses of water a day and try to eat non-processed foods. You mentioned tv dinners. Well, ive found many that have 400 mg or less of sodium so don't rule those out completely if needed in a hurry. As time passes, you'll find a lot of confusion published about renal diets. So, don't stress. Remember diet to YOUR labs and YOUR medical problems. Sounds as if you should be thinking about your pre-diabetes and your cholesterol when planning meals.
Now. Relax and enjoy your vacation..BTW I'll congratulate you on losing 30 lbs even if your doctors didn't. That is some accomplishment. Keep up the good work. I've been trying to lose 30 lbs for the last 20 years. My best to you and check in with this forum whenever you need to chat.
Drmind, thank you so much! I lost my mom not long ago, and she was always a pragmatic voice of logic for me, as well as a cheerleader. Your words reminded me of what she might have said to me. I'm so grateful for your kindness and support. And yes, I AM proud of that 30 pounds gone!
Oh, wow, that's wonderful. Still, I'm sure I've read that so many of us weren't referred until we got into 30's. Hope that gave you a chance to deal with things earlier.
I think a lot might have to do with what insurance we have. I have original Medicare and I don't need a referral to see a doctor. HMO's usually don't like to refer.
I've had original Medicare for years. But, I had different primary doctors who were all seeing too many patients. I've had 15 minute visits if I was lucky. I have a good one now. Take care. Nice chatting
About eating out, go with smaller portions and enjoy your vacation. I heard a couple of renal dieticians speak a few months ago and they recommended "Smart Ones" and I think "Healthy Choice" for TV dinners-just check sodium. My father had CKD over 40 years ago and how things have changed! Smile!
Please be cautious with smart ones and healthy choice. They claim lower sodium but substitute potassium chloride for sodium. The potassium switch can be dangerous for some. Blessings
Not much I can add to what my fellow Warriors have said. Relax and live your life. At this point, a slight drop may mean absolutely nothing. It could be as simple as the blood sat for a period of time before testing. I had one lab draw, all the same tubes. But they ran two tests, one test later in the day and ALL my numbers were worse in the later test. Tests are just a picture, and not always accurate. I had one lab draw where my potassium was supposedly 6.3. They told me to rush to ER and I did. They redrew blood there, and it was the same day only 8 hours later and the number was 4.7. I have learned not to panic with the numbers. Even my Nephrologist does an average when she assesses my GFR level.
Now to diet. At this level, and with less issues, a diet should be a lifestyle and not punishment. What I can suggest is think of your body as a processing plant. What you put in will be what you get out. So, the purer the food, the less toxins to process. Processed foods, frozen and canned are things you want to limit or eliminate. Learn to cook, take classes if you can and think of it as a hobby. Experiment with things and learn new foods you might like. Have friends over and make meals together that include fresh veggies and whole foods. Make it fun. More plant based is always good. AS far as the cholesterol, diet does not always impact it. It can be from other things such as inherited. But when I went whole foods, no fried, no processed and no meat, it dropped. I have high triglycerides also and they dropped significantly. I eat absolutely no red meat. I stopped chicken and fish also and very limited diary and eggs. I am a much later stage than you and but being plant based totally, it was too much. I now have added back in some chicken and eggs and some dairy.
When making meals, make enough to freeze and then when you do not have time to cooked, pop one out. I have always ready-made salad. Do not buy the crap in the bags. There are preservatives on it. Buy fresh produce. I buy lettuce, rinse it and dry it and store it in a Tupperware container with paper towels. It keeps for days. I chop up my other veggies and bag them and then, instant salad. We got to farmers markets for our produce. We go to a butcher for meat, for my husband. We spend the money on good clean food. Well worth the extra cost. Don't think of diets as restrictive. Think of it as a change. YOU are worth the time and money to put the best fuel into your system. I always laugh when I hear people say they put the highest octane and best gas in their car but cannot fathom diets.
At this GFR level you have, enjoy life. Have cake if you want it. Life is too short to panic with one moment of indulgence. You will maintain a healthier lifestyle in the long run if you allow fun and the things you enjoy to be part of it. Cake every day.... nope.... but once in a while...yup and savor it
Just for example, I was told almost 6 years ago, when I was stage 4 and rapidly declining that I would be on dialysis in 6 months. Changing my lifestyle made all the difference. I lost 50 pounds and kept it off. I have very damaged kidneys, which it sounds like you don't. Have faith that you can keep it that way.
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