I am a 77 year old female in the US . I have been just watching what others write and trying to learn here. I have CKD and did not realize it until last year. I am a little upset with my DR because until my EGFR got down to 24 and I asked about it he said it was just an estimate. I am wondering why he never said a thing until I mentioned it. I got my own nephrologist and love her. My EGFR is 25 now but went down to 17 for a bit. I have learned here to watch my diet and what I drink. I have started drinking bottled water because in my little town our water is full of chemicals and I hope that helps. I am over weight and have lost a little because of more vegetables and less meat and I am a type 2 diabetic with HTN and have gotten that down too. I appreciate all of the things you all post and like you I am trying to keep my numbers going in the right direction.
interested in learning: I am a 77 year old... - Kidney Disease
interested in learning
Doctors not taking kidney disease seriously seems to be more common than not. After casually reviewing my medical records while updating a prescription I notice in capital letters stage 3 kidney disease I contacted my doctor to tell her there was a mistake on my chart. No mistake, she said for my age I was good, but she wanted to remind herself to watch my kidneys. I don't know what is good about stage 3 no matter what your age (67). Glad you found this forum it has been a blessing to me.
SAME HERE. I CANNOT BELIEVE MINE NEVER SAID A WORD ABOUT IT TO ME AND I WAS THE ONE THAT SAW IT GOT THE NEPHROLOGIST. WE HAVE TO BE OUR OWN ADVOCATES WITH OUR HEALTH. MY DR IS A GOOD ONE AND I AM AN RN AND I DIDN'T LOOK AT THE LAB RESULTS THERE EITHER AND CAN'T BELIEVE I DIDN'T SEE IT .
I had similar experience and changed Doctors when I moved to another state and the new Doctor looked at all my records and other bloodwork , and then put me on CKD diet. I was diagnosed at 3b.
MY NEPHROLOGIST ONLY TOLD ME NO CARBONATED DRINKS AND TO WATCH RED MEAT AND NO ADVIL AND TO WATCH MY GLUCOSE AND BP. SHE DID NOT GO INTO DIET. I HAVE DONE THAT . I THINK DIET AND WATER ARE SO IMPORTANT AND IT HAS HELPED ME.
Bluefax is on the money. I'm only a few months into learning about managing CKD and if I'd a $ for everytime I heard "the doc said not to worry about my eGFR 40" or "the doc never told me until I was stage 3b" I'd be able to afford private health care already.
There are an awful lot of people reporting significant improvement based on diet. Lots of folk are doing lots of different things but it would seem that plant-based (or at the very least, very significantly so) is the way to go. Along with other measures like hydration, sodium, avoiding processed foods, etc.
The "warning" about docs extends to your nephrologist unfortunately. You cannot take as a given that they are going to be on the money. A few short months ago, my own nephrologist when asked what I ought to do about plunging numbers merely said to take it easy on red meat all. The same advice given all the way down from 3a to 3b. Even when I was scraping the bottom of the stage 3 barrel, no mention was made of diet. On my way out the door of the consultation I asked whether I ought start focusing on diet more and got a lukewarm response "oh well, it would do no harm to start into the edges of a renal diet"
My urea (waste product in the blood and a kidney toxin) at that point was 13.5 (normal range 2.5 - 7.8). After unilaterally going on a plant based, very low protein diet, urea is now 6.4 and in range.
So much for a nephrologist. I'd not dissing yours (or even mine) but just beware about supposing all is now well.
You're here and it's a good place to start learning.
I LEARNED A LONG TIME AGO NOT TO GO JUST ON WHAT THE DR SAYS. THEY ARE NOT GODS AND I W ORKED WITH THEM FOR 30 YEARS. I TELL MY KIDS THIS ALL THE TIME. I HAVE DONE A LOT OF RESEARCH ON FOODS AND ANYTHING I CAN FIND AND I AM DOING BETTER NOW. DIET WAS MY MAIN CONCERN FOR NOW AND BOTTLED WATER AND LOSING SOME WEIGHT AND CONTROL OF MY SUGAR AND BLOOD PRESSURE. ALL OF IT HAS HELPED .
In Mechanical Engineering school I distinctly remember looking at the projects folk had made when we all got together in the assembly hall to demonstrate their working.
I couldn't believe that so many people in final year engineering could produce designs so utterly lacking in ability to solve the problem set. Weak, immature, ill thought through, badly constructed.
There were perhaps 6 or 7 of us who made a decent stab at successfully solving the problem set. Solutions that understood the various facets and constraints involved in the problem and attempted to address them.
I really scratched my head at the idea of these folk heading out into industry to make a career from engineering??
In my country (Ireland) the folk who become doctors are the folk who score the highest number of points in school. Quite what scoring a high number of point in final school exams, (learning how rote learn + hard work will do it) has to do with doctoring ability I really don't know.
Here like in any field you have good Drs and bad Drs and some in the middle . That's why you have to be your own advocate and ask questions. I should have paid more attention to my lab a year ago. I just thought if I had a problem mine would point it out.
Me too. They did point out that there was a problem. But not that I could do anything about it.
I believe that with most problems there will be a way to work on it. You just have to do a little research and find the solution if there is one
Invariably. Thankfully, in the age of the web its possible to going digging a darn sight more easily than before. Sure, there'll all kinds of rubbish that can be dug up instead of diamonds. But there's gold in them thar hills.
YOU ARE SO RIGHT.LOL
Thank goodness we have on line records to look at. Before you had to ask to see your records.
Welcome to the Community. We are a great bunch. Unfortunately, what you experienced is not unusual. My kidneys crashed after an adverse event from medications. I was feeling so terrible but no one said anything until my rheumatologist said something when looking at my labs months afterwards. They had rebounded to 41 but did not stay there for long.Keep doing what you are doing. Learn what you can. Ask questions, even if you think they are silly, because if you have a question, so does someone else who may not ask it.
We really strive to be patient advocates and there is lots of things and groups you can get involved with to help others with CKD and even legislation if you are interested.
BTW, I was told 3 years and half ago to prepare for dialysis. Still going strong, even with a low GFR.
That's wonderful for you. I now request my lab results instead of waiting to see the Dr and have him tell me if I have a problem and my x rays too if I have them. A lesson learned on my part. I used to be a big country food eater with gravies and lots of breads and fried foods. that has changed now and feel better and my labs look a lot better . I do ask more questions if there is something I do not understand or I look it up . I really like this community and the people here . Thank you for the welcome
Excellent work in controlling your diet. Diabetes is a monster. It takes out kidneys, eyesight, limbs and more. My hubby grew up in New England, surrounded by parents and relatives also serving up big country dinners. Sadly, many of his ancestors passed away from their diabetes instigated conditions. His mother, on the other hand, promptly lost her weight when told of her approaching diabetes. She never needed meds and lived into her 80s. But her son ignored the signs, and lost his kidneys. A dialysis nurse told us at the dialysis that "almost all" the patients there were diabetics. You're wise in reading the tea leaves and taking charge of your wellbeing.
TRUE I WAS SITTING AT MY COMPUTER SEVERAL YEARS AGO AND MY RIGHT EYE WENT OUT LIKE A LIGHT. TOTAL BLACK OUT. TURNS OUT I THREW A CLOT AND LOST THE MID AND INNER VISION IN THAT EYE. I STILL HAVE JUST A LITTLE PERIFERAL VISION. THAT WAS DIABETIS AT WORK . WORK AT KEEPING YOUR SUGAR IN A NORMAL RANGE. I HAVE A BETTER TIME OF IT NOW THAN I DID WHEN I WAS YOUNGER
Well, I'm pissed at your doctor too. Yes, take better care of yourself and be your own advocate. I think most of us are learning that. Best wishes.
THANK YOU AND YOU TOO
Hi! A familiar story, I'm afraid. It was only when he gained access to his past records that my partner realised that his test results showed the onset of CKD many years ago. No warning was given by the GP, other than to say the kidneys were "ageing", and BP tablets issued to "help" with this. (We are in the UK). No further checks or monitoring were done until an unrelated event last year caused kidney damage, which then revealed his past history. We have had to do our own research, like you, as he currently has several conditions which unfortunately need contradictory treatment plans. However, working with detailed spreadsheets for these issues, together with naturopathic advice for his CKD, which seems to be working for him, we are kind of getting there. It's certainly not easy, and just as well that he is retired with the time to try and sort these things out. Not the healthy, active retirement that was envisaged, though! Hopefully your research will continue to be if help to you, and enable you to stabilise, if not actually improve, your condition. Keep up the good work!🙂
YOU TOO AND HOPE YOUR PARTNER DOES WELL. THIS IS A GREAT PLACE TO VENT AND LEARN . I AM GLAD I FOUND IT
🙂🙂🙂
November Lady : would you be able to use lower case in your posts please? It makes for easier reading & also on social media using capital letters signifies that you are shouting!
WEL I AM BLIND IN ONE EYE AND BAD VISION IN THE OTHER AND THE CAPS HELP ME TYPE . I AM SORRY IF IT BOTHERS YOU
I'm also 77 years old...Noticed my eGFR about 3 years ago was around 58..Doctor really never said anything to me, nor was I concerned. Over the course of 3 yrs it got down to a eGFR of 40.. I questioned the doctor about it, but his response was I'm doing fine and all my numbers were good. Well I was concerned because I started doing research on CKD. As you can imagine I was worried because the eGFR was falling.. After months of research and reading I decided the best thing for me was a Plant Based diet, with moderate protein (No animal protein or dairy).. I was already in good shape because I'm a walker.. I walk at least 2 Hours every morning and have done so for like the last 8 years. I'm 6'2" and 160 lbs.. So after following my plant based diet for around 3 months my eGFR jumped to 59 and my BUN fell to 18 and my creatinine dropped down to, if I remember right 1.19. I will return in November with new blood results to see how this has worked over the course of time.. All my markers are in the normal zone and I'm negative in regard to protein leak, so I expect good results. I was also told because I'm 77 that my eGFR was in a good range. I wish you well on your journey, stay positive because the mind is a great healer
SOUNDS LIKE YOU ARE DOING REALLY WELL. I HAVE LIMITED MEAT AND JUST EAT CHCIKEN AND FISH MOSTLY NOW AND VERY LITTLE OF THAT AND LOTS OF VEGETABLES AND A LITTLE FRUIT AND I FEEL GOOD AND MY NUMBERS ARE SLOWLY GETTING BETTER. MY EGFR HAS DROPPED FROM THE 30'S TO 17 SO THAT WAS SCARY AND THE LAST DRAW IT WAS 25 SO GOING BACK UP THANK GOODNESS
I was very blessed with an awesome GP, who red flagged me immediately and got me to a nephrologist. I have no underlying issues to have caused CKD but I have it and I'm fighting it all the way. Since the discovery of Stage 3 CKD, I have undergone many tests to see what was going on and I unfortunately had to have my left kidney removed bc it was the nasty beast causing many of the problems. I changed my diet immediately ... no red meat, no salt, lots of plant based foods and lots of good ole H2O. OH and no NSAIDS!!!!!!!!
I WISH MY DR HAD BEEN MORE PROACTIVE WITH ME. WHEN I NOTICED MY GFER WAS 24 I SAID SOMETHING TO HIM AND ALL HE SAID WAS THAT IT WAS AN ESTIMATE. I GOT MY OWN NEPHROLOGIST AND SHE IS ON TOP OF THINGS THANK GOODNESS. I AM UPSET WITH MY DR I HAVE HAD FOR 30 YEARS BUT IT SEEMS MANY ARE LIKE THAT . I LIKE YOU HAVE DONE MY RESEARCH AND CHANGED THE WAY I EAT AND WATER AND NO CARBONATED DRINKS OR PROCESSED FOODS AND I AM SLOWLY GETTING BETTER . I WENT ALL THE WAY DOWN TO 17 BUT BACK UP TO 25 NOW AND HOPEFULLY WILL GET EVEN BETTER
Sounds like you are doing all of the right things. Most of us have had similar experiences with doctors not diagnosing our CKD till we are at Stage 3. My advice is to learn as much as you can about your kidneys. You can sign up for a class on Davita.com kidney school. I find that the more you know the better...it is power. Doctors take you more seriously when you ask intelligent questions...unfortunate but true.Best of luck to you. Keep us posted.
THANK YOU AND YOU ARE RIGHT ABOUT ASKING INTELLIGENT QUESTIONS AND TAKING CHARGE OF YOU BODY AND KIDNEYS
After reading all these comments, I must say that my Dr's were a bit laid back about my CKD as well. It was a gradual decline, but they just kept saying "we will just watch it and get regular tests, but never discussed what could be done to prevent it. I had to ask him about diet changes and seeing a dietician and then he said ok if you want to. I kick myself for not being more pro active and asking questions sooner, perhaps I wouldn't be in my current phase. I see my nephrologist again in 2 weeks and we have started the process of being referred for Kidney Transplant. I'm stage 4, My GFR last time was at 17 and I'm hoping it has not dropped any further. This really is scary for me not knowing what is next. I'm happy to have this forum to come to for support and information.
I am in the US also and my decline in kidney function came on over a period of three years - my eGFR was 59, next year 44, next year 33. My GP did note it but felt it was related to hypertension (which was not completely under control). We believe the HBP drug I was talking might have been causing some of the problem since it processed through the kidneys. She changed my blood pressure medication and referred me to a nephrologist. (And gave me a higher dose of a different HBP drug).
I feel that my biggest problem is going to be coordination between the doctors. My primary care physician (GP) is the "gatekeeper", determining whether it's time for me to see a specialist. She referred me to a nephrologist, which is great, but how do I know that what she prescribes does not conflict with what he wants me to do? I recently got diagnosed with osteoporosis (most likely caused or exacerbated by kidney disease). So (to my surprise) my GP referred me to an endocrinologist since apparently they are the ones who handle osteoporosis (I did not know this!).
For example, I know that my endocrinologist is going to want me to take a bisphosphonate for the osteoporosis (which is not always recommended when it comes to CKD). Is it up to her to ask the nephrologist if that's okay with him, or is it up to me? Do I wait until I see him in October to let him know? I guess I haven't got the hang of the coordination between the team that bothers me the most. I am pretty certain they don't all do daily conference calls to talk about me - lol. Which is why I try to do online research - not crazy about it but I feel it's necessary to at least know what the potential problems might be.
novlad1, We have much in common, type 2 diabetic for 30 years, poorly managed, htn, also poorly managed. In stage 3, egfr was 60, now 55 after six months, or 59, if you trust the UPMC web site, enter your demographics and your blood creatinine and wa la there is your egfr, so which is more correct?? Like you my doctors leave a little to be desired. They are quite paranoid of covid 19 so in face appts have been lacking despite masks and two moderna shots. And when they do talk on the phone it is for 5 minutes and we will talk in six months which leaves me with many unanswered questions. But the Cleveland Clinic was willing to spend face to face time which is much appreciated. I do have a dietician, a big help and one nurse educator and looking for another one. So yes support is much needed. This site is also fascinating, to see what we all are dealing with and how we cope. I have lost twenty pounds in last six months and my bp has dropped into the 120/80 range. But the big improvement is the Free Style Libre, so now for the first time I can monitor blood sugar 24/7.What is my prognosis, no one wants to say. KB
I AM LUCKY TO HAVE A GOOD NEPHROLOGIST NOW AND MY INTERNIST JUST NEVER SAID A WORD ABOUT MY RENAL VALUES UNTIL I BROUGHT IT UP SO A LITTLE UP SET WITH HIM AND I WATCH MY LABS AND SLOWLY COMING UP WITH MY EGFR. IT GOT DOWN TO 17 BUT I HAVE BEEN EATING A LOT LESS MEAT AND MORE VEGETABLES AND IT IS BACK TO 25 AND WANT TO GET IT A LITTLE HIGHER IF POSSIBLE . I AM USING LESS INSULIN TOO AND LOSING A LITTLE WEIGHT AND HOPE TO LOSE MORE
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