I am at stage 4 GFR 23, Type 1 diabetic for 43 years. I had one nephrologist and was not happy with my care. I dropped him and was referred to my current doctor two years ago. My ckd was caused by immunosuppressive drugs when i had a pancreas transplant. I was told by many doctors that nothing could reverse the damage done. I believed them and did nothing. No research and I did not really change my diet only watching my potassium intake. My husband got me a smart phone in Jan when we joined weight watchers so I could get the app to track. So i was wanting to know how much water i should be drinking every day ( had been drinking 62+ ) i called my doctor she told me to only drink when thirsty. WTH does that mean! So stupid me cut back and ended up in the ER. My bp dropped really low, muscle cramps, vomiting, severe diarrhea. I thought i was having a heart attack. Dehydrated was all they came up with. Labs done indicated GFR at 23 ( had been 27 ) I freaked. I started researching like a mad women. I would call my doc and ask about how much potassium, protein etc. I would sometimes wait over a week to get the info back. Thet told me 60 g protein, 4 gm potassium, limit salt and no need to limit phosphorus. I requested a renal dietitian because of all the confusion and conflicting info out there. My doctor told me she did not know of any renal dietitians. Mind you she is the head of a dialysis center and a nephrologist. Yikes! She suggested I call Davita. Davita told me they could not help me or refer me to an RD. I have found several online but found i need a referral if i want insurance to cover it. So last week I called my doctors office asking if i could get my labs done early so we could discuss at my appt. No response. I called again, no response. So I go to my appt and they ask if I got my labs done. No, i did not hear back from you! Oh well we called the order in the day you called us. WTH, how am i supposed to know this? So I tell her about all the changes ive made w/diet, dropping medications, losing weight and my bs down. I told her about my growing anxiety over my conditions and my frustration. She told me to stop with the internet and kidney disease research. She told me to enjoy my life that i should limit sodium that whatever i did was not going to cause me harm or help me at this stage. She told me I was fine to start my antidepressant back up that only people with kidney injury can improve GFR and creatinine. I just don't know about doctors anymore. I don't know how to find a good one. I do not want to go back to letting this disease progress without a fight.
Seriously questioning my doctor, need yo... - Early CKD Support
Seriously questioning my doctor, need your advice!
Excuse me for saying but, that is pure b.s.! One can, and I have, increased GFR and decreased creatinine level by searching the internet; limiting sodium, potassium, phosphorous and protein; drinking more water and doing mild exercises. I, too, have changed from one nephrologist to another (who I am still not thrilled with), seen a dietitian (who was a diabetes dietician and knew nothing about ckd) and then, through my own research and reading posts by many wise people have gone from a GFR of 34 to 54 and a creatinine level of 1.4 to 1.0.
Look for posts from Mr. Kidney on this forum. He has much wise advice. You can also read my previous posts. I do not take the internet at face value, but I do use the internet.
These are helpful sources:
National education, support and advocacy organizations:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Keep us informed, because those of us who are walking the walk often can help you more than the "professionals".
lowraind
All I can say you are the master of your body. You have to put in the work. I have come to the conclusion that doctors are not well versed in nutrition and fairly don't care about it. I am an NP and in this instance I will say thank God for the internet. You can increase you gfr through diet but everyone is different. That doesn't mean you don't try. I'm still not over the water part yet!!!!! Water is life to kidneys. But please get another nephrologist and discuss with your doc how much you should drink in regards to your current gfr. At this point you need another doc !
Hi, well your nephrologist sounds kind of wacky but I will say this. Mine doesn’t think outside the box either. I listen to what he has to say, I do my research and I do what I think will be best for me. The other day I asked if he knew of anything to lower my bun and creatinine. He said no, you’re already beating the odds. I just smiled and thought to myself, the reason I’m beating the odds is because I try things and I pray.
I’m not going to sit back and let this thing take me without a fight! I could never get a dietician either so had to do it all on my own. Hope this helps. Prayers for you. God can do anything😀
You provided a lot of information. Interesting. One thing is clear. You are not happy with the current doctor. Well that is one thing easy to fix. Change doctors. Now about your medical condition and facts. If I understand correctly you said the egfr went from 27 to 23. This is not unusual at all! It can be caused by so many things. Remember the "e" in egfr stands for estimate. I first suggest you to go the website by kidney.org. They have an online calculator where you can get two readings on your gfr. One is the standard method which will likely give you the same numbers you gave us. But they also have the option where it is not based on some national average of people your age. Instead you also will add your height and weight. Then a new calculation is given. One based upon you, not some national average. Next (and I know many will disagree with me) I understand what your doctor said about not improving your creatinine levels, etc. I think the word they left out was "significantly improve". For example, go for a test right now and you will get a creatinine level. Now for the next week drink at least 65 or 70 ounces of water per day. Go for the test again, and your gfr will be slightly improved and your creatinine level reduced. But you will still be stage 4 ckd. It did not "repair" the kidney function. The normal decline in kidney function will still be the same. Those of us with CKD need to avoid causing unnecessary additional harm to the kidney. The diet your doctor recommend about protein levels, fluids, salt, sugar are the same exact numbers that are given as normal daily intake recommendations on any package of food you pick up. We should just follow normal guidelines. All of which are intended to control blood pressure, sugar levels etc., to prevent further damage. NOT to cure us from CKD. There is no cure.
Remember 10% of the population in the United States have CKD. If there is a cure the number would be much lower.
Did we have the same doc ??? I left my first one when she misdiagnosed me at least twice.
Getting labs for this one is odd ...
Labs after visit or none at all or like one time when i went in and was asked what kind of test i wanted.
So i called yesterday ... for appt today ... and asked if i was scheduled for a lab and was told that the doc would be asked. When told yes i had to ask if fasting or non and also when did i want one ... before or after appt.
Doesnt doc want to see whats going on before an appt instead of patients going in/then having lab and having to go back ?!
What is it these days ?!!!
We cant see the kind of specialist we'd like without regular doc referral and docs wont always give it. (First doc wouldnt give referral to cancer doc when i found out i have braca gene or kidney doc after labs said i have kidney disease and misdiagnosed shingles and blah blah blah.)
So between the two ...
Just complaining ... but here's a good place.
That is how I feel exactly.
Lgriffis ...
You might be interested in my doc appt today. Strangest i've ever had ...
Called yesterday to find out about blood lab since i want to do followup on kidneys at my (regular ???) appt today. I can have it done before or after appt but id like it done before appt so doc can see it like old doc did to see whats going on for my appt time.
Get to lab ... take a number ... have blood drawn and go sit with husband in waiting room and wait.
Called in to see doc and nurse says yearly check but when its a wellness check like this one ??? ... i never did figure what if what i had was wellness or yearly ... if i have probs like aches and pains medicare may charge me extra but kidney questions are ok.
Talk to doc ... tell her about kidney concern and she orders a p-test.
Back to lab.
Tech ... who had done previous blood draws and always seemed a little questionable to me asks ... what my name and birthdate are and which arm do i want for my blood draw.
I said you did one already. Oh, she said, when ? Me .. 15 mins ago tho its more like hour actually. Oh she says ... and points me to the bathroom and gives me cup which i use and leave.
Soooo ... since she didnt ask my name etc for the blood draw ... whose labs will i get ?
And !!! If i cant say that i feel bad or have probs etc to the doc when do i do that ? Make another appt and bill medicare a second time when i couldve said it at this one ???
Is it ...
Doc ... are you feeling well today ???
Me ... yes (even tho i dont but dont want to say it in case im charged extra)
Doc ... goodbye 
Ps ... apparently patients get a draw at the office and its sent to the hospital about a mile away and then in a couple days doc gets the results.
I did insist on a paper copy mailed to me tho.
All this is making me tired
So very frustrating. I’ve had stage 3 for many many years. Just didn’t take aspirin, ibuprofen, etc. now I’ve been diagnosed with autoimmune disease and my gfr fell from 51 to 45 to 43 in six months. I know that isn’t terrible but I’m concerned as to why it’s falling. I’m with you. Doctors don’t care, don’t have time, etc. our medical care is horrible. My GP said take COQ 10. That will help with the numbers. I’m not worried about the numbers but if something is causing it to fall i’d Like to see what it is and take care of it before it gets bad. It could be related to my autoimmune.
My experience is the same as yours. My kidney doctor cant wait to get me out of her room. She just sends me on my way with a "see you in 4 months" but month by month my kidney function drops and I get more and more tired. Now they have referred me to a dialysis centre although I am not actually on it yet. I too have an autoimmune problem which is destroying my kidneys yet I have never been offered any medication to try and slow it down. But I recently learnt of other people who have the same problem and have slowed down the progression with steroids. I have never even seen a renal dietician. I wish I had changed nephrologists before I had reached stage 5 but I trusted that mine was doing everything she could for me. But I don't think she did.
That’s terrible. I think some doctors just want to collect their check. I haven’t been referred to a nephrologist, at least yet. Suppose they want to wait till it’s really a problem. What happened to preventative medication?
I totally agree. My experience in the UK has shown me that the medical profession here are far more geared up to providing preparation for dialysis than doing anything to slow down the progression as long as possible which as you rightly say would be preventive medication. Everything that I have learnt about kidney disease and keeping healthy with it has been obtained by self research and the valuable input from this forum.
Me too. I live in the USA, 50 miles from LA and 40 from San Diego. Big cities where you would think medical care would be excellent.
My experience is the same as yours rabbit01. I am in the UK and saw a nephrologist privately. I had cut red meat out of my diet, upped my water intake and done all I could to increase egfr even stopping my one glass of wine a night. The nephrologist said I could eat red meat only not having any 24 hours before renal test. Also said drink your wine and enjoy life. One kidney was removed a year ago due to cancer. I have chronic heart disease which means I take lots of meds including Warfarin. I have recurring UTIs and have limited ABs I can take. My egfr went as low as 29 when on AB and the most recent was 46. This is only due to upping water intake and dietary change. As I am 84 and feeling reasonably well I want to stay that way, but my adjustments to lifestyle are due to my research on the net and joining this group. The NHS IS not interested unless you need dialysis and are not old!
Like in all walks of life there are people that are good at their job and there are people that go through the motions and are at best mediocre. The medical profession is no different. I know its hassle but you only get one body so I would suggest changing your doctor for one that cares. I am just in the process of trying to do this as the doc I have is no more than a spectator watching my kidney function slip away month by month. Despite being diagnosed at late stage 4 over three years ago I have been given no medication, no diet advice and not even seen a renal dietician. I have now slipped into stage 5 and have had to go off sick from work as I am so tired. I emailed my last blood results to the doc and did not even get an acknowledgement that she got the email!
The problem with these docs is that the medical world teaches them that the kidneys can not repair themselves. Which is in part true. The thing they haven't realized is that they need to help not further the damage. If someone is in stage 3 make them aware of it and help not make it worse. But they aren't going to until people start speaking up and bringing it to their attention. Every doc tells you about dialysis but only some tell you about dieting At least my doc told me to drink plenty of water and to change my diet. But till this day has not told me which diet....lol.
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